Rieale's 12-18 reply to Ed's 12-12 ICD experience
Heidi12-18 seek ablation experiences
Joanne C's 12-18 reply to Shane C's 12-8 SSD & a question
Jackie 12-18 new to CHF, seek support
Marilyn 12-18 new to CHF
Jon 12-18 still breathing, barely
Joy R's 12-18 reply to Ruthie A's 12-14 & to Jan S
Jan S' 12-18 reply to Beverly C's 12-15 I also have anemia of unknown origin
Carol M 12-18 spiking blood pressure questions
Jackie S 12-19 happy holidays
Joshua S' 12-19 reply to Carol M's 12-18 CHF congestion interfering with life
Joe S' 12-19 reply to Jon's 12-18 leaky valve vs CHF, SSD & more
Jon's 12-19 reply to Joe S' 12-19 does anyone know how to set up a list serv?
Walter K 12-19 bad taste in mouth and ACE inhibitors
Linda Z 12-20 does anyone want to start discussion list?
Brandy Lee's 12-20 reply to Carol M's 12-18 at home BP monitor possibilities & more
Phyllis A's 12-20 reply to Phyllis W's 12-12 and an update, fibromyalgia, prayer request
Jack B's 12-20 reply to Beverly C's 12-15 anemia and aspirin
Randy B's 12-20 reply to Beverly C's 12-15 anemia possibilities
Shane S 12-20 having episodes, seek advice
Jon's 12-20 reply to Shane S' 12-20 possibilities, postural hypotension, dehydration
Joe S' 12-20 reply to Jon's 12-19 colloidal silver, naps
Bill D's 12-21 reply to Shane S' 12-20 possible carotid blockage
Tony's 12-21 reply to Carol M's 12-18 blood pressure experience
Autumn's 12-21 reply to Robin Lynn's 12-10 PH experience, questions
Jon 12-21 to Autumn, sorry
Bill D's 12-22 reply to Tony's 12-21 varying BP
Jan S 12-22 Christmas story
Jon's 12-2 reply to Jan S' 12-22 Jesus is
Carol M 12-22 EPS just left me hanging
Jon's 12-22 reply to Carol M's 12-22 inducible versus non-inducible arrhythmia
Joe L 12-22 intro
Dana J's 12-22 reply to Joe S' 12-20 colloidal silver questions
Jon 12-23 page updates and additions
Tracey C 12-23 seek low sodium cheeses, also familial DCM
Debbie 12-23 constrictive pericarditis questions
Tony's 12-23 reply to Bill D's 12-22 meds, symptoms & high blood pressure
Jon's 12-23 reply to Tony's 12-23 calcium channel blockers and CHF
Phyllis A 12-23 happy holy days
Luc D 12-23 happy holy days
Deanna 12-23 intro, questions
Autumn's 12-23 reply to Jon's 12-21 webtv, e-mail problems
Jon's 12-23 reply to Autumn's 12-23 webtv, e-mail problems
Joe S' 12-23 reply to Dana J's 12-22 colloidal silver and more
Jill S' 12-23 reply to Joe L's 12-22 anabolic steroids, meds questions
Jon 12-25 merry Christmas
Jon 12-25 to Mike W
Carol W 12-25 merry Christmas
Walter K's 12-25 reply toTracey C's 12-23 low sodium cheese source
Jack B's 12-25 reply to Tony's 12-21 taking blood pressure a lot
Mary Lou L 12-25 merry Christmas
Jim's 12-25 reply to Tracey C's 12-23 low sodium cheese source
Joe L's 12-26 reply to Jill S' 12-23 bodybuilding supplements & CHF, and more
Jana B 12-26 update on Mark, me & more
Donna Z's 12-26 reply to Walter K's 12-25 low sodium cheeses and roast beef
Tony's 12-27 reply to Jack's 12-25 taking BP many times a day
Ginger's 12-27 reply to Jana B's 12-25 watch out for doctors, prayer request & more
Cristina 12-27 had my surgery - valve & CHF questions
Dick W's 12-27 reply to Beverly's 12-15 anemia and CHF
Jon 12-27 page updates
Tracey C 12-28 questions about stopping meds
Lee's 12-28 reply to Cristina's 12-27 corrective surgeries & ongoing CHF
Joshua's 12-28 reply to Cristina's 12-27 corrective surgeries & ongoing CHF
Rick M's 12-28 reply to Tony's 12-21 BP machine calibration
Maggie's 12-28 reply to Jim's 12-25 thanks for the low sodium cheese info
Jack's 12-28 reply to Tony's 12-27 taking BP many times each day
Jon's 12-28 reply to Tracey C's 12-28 stopping heart meds
Jon 12-28 page updates
Ben B 12-29 liked this article
Ophelia 12-29 update - EF is up but still weak
Kathy 12-29 seek North Carolina CHF doc, EF questions
Vee's 12-29 reply to Maggie's 12-28 low sodium cheeses
Terri's 12-30 reply to Kathy's 12-29 North Carolina docs & more
Karen K 12-30 high potassium - any ideas?
Barbara P J 12-30 low sodium cookbook, SSD denial
Vee 12-30 calcium & high BP, questions & more
Bill B 12-30 intro, would like to chat
Joshua's 12-30 reply to Jon's 12-28 stopping heart meds quickly
Jon's 12-30 reply to Joshua's 12-30 stopping heart meds quickly
Rieale's December 18 reply to Ed's December 12, 2000 - Hi Ed, Your post sounded almost exactly like mine did 2½ months ago. I was struggling about whether to get my ICD implanted at Cleveland Clinic as part of the InSync trials. After weighing the potential benefits and risks, I decided that it was the right decision for me and was implanted on October 10. As for recovery time, it took almost no time at all. They planned to keep me in the hospital for up to 3 days, but I only had to stay a day and a half. I took it easy for a week and didn't lift much for a month. After that, I've been better than before.
As for issues of a normal life with the ICD, as time passes the issues become less and less. The incision area is still kind of tender but nothing painful. When I'm sitting very still, I can feel little pulses but it's more interesting than annoying. The unit can be seen through the skin but I've noticed that it's shifted and settled and is less noticable than at the beginning. My life is actually more normal now that I have the ICD. I can still exercise, go camping, have sex, and do all the things I could before and now I have more energy for them.
Don't get me wrong: it isn't often that I forget that I have an ICD, but for me it is a potential lifesaver. It can give you independence and piece of mind. However, risks such as lead infection and accidental defibrillation should be weighed seriously. These didn't have a role in my experience. Please feel free to e-mail me if you want to talk. Rieale@aol.com
Heidi, December 18, 2000 - Hi everyone, I am so glad I found this site. I am 37 years old with two kids, and I have tachycardia. I've been having fast heartbeats since I was 18, and probably since I was born. I've been taking Rythmol for about 10 years now and my cardiologist thinks it's not good for me to take the medication that long. He is suggesting an ablation (RFA). I am scared because I heard some disappointing news about the procedure. Has anyone here gone through the same thing? Thanks. email@example.com
Joanne C's December 18 reply to Shane's December 8, 2000 - Hi, I believe working while trying for disability would be against your better interests. I was denied as well and a friend (who is a lawyer, but did not get personally involved) advised me to write my local Congressman and Senators, as well as to learn (from the state SSA office) who was the head man at my local SSA office and send all of them certified letters informing them of my concern due to the lack of interest in my case. I was approved within a month. Both the Congress and Senators' offices replied both by phone and by mail, and both did contact the SSA folks. Use your US rights before agreeing to pay a lawyer. I didn't think it would help but it sure did for me.
Has anybody here dealt with spontaneous coronary dissection? Joanne C. firstname.lastname@example.org
Jackie, December 18, 2000 - Hi, Happy holidays to everyone. This my first time and I'm glad to be among friends who understand and are reaching out to help. I have DCM and CHF, and I am 48 years old. I am frightened and lack understanding of this new condition. I have read posts about medications and I am taking some of the same ones. I had a heart cath in both legs and now it seems I have a lot of pains and now I have breast pains. Please reply if anyone has experienced this. Keep looking up. I know help is on the way. email@example.com
Marilyn, December 18, 2000 - Hi All, I thought I'd better check back here because you guys seem to know what you're talking about. I have been having all sorts of fun with pulmonary edema, cardiac asthma, anemia and dehydration. To say I'm confused is putting it mildly. Being an old retired RN, you would think I'd know a little about how to keep myself from getting sicker than need be, but no.
The doc gave me too much diuretic and because my symptoms continued to worsen, they kept upping the dose and I was too dumb to know better. Finally my PCP did the blood work and cut the diuretic down drastically, and I cut my fluid intake. Voila - better. I got some injectionable B12 and take a shot each month. I still have edema of legs and feet, but my breathing is getting better. I take oxygen when I'm active and slowly but surely I'm seeing light at the end of this old tunnel. This is a yo-yo type disease and if you lose control, you're up a creek. From now on I plan on asking more questions, or at least try to pay attention.
I am going in overnight to have a sleep study done and maybe that will tell me something. Both the specialist and my PCP seem to think I have sleep apnea. We'll see. I trust no one now. Thanks for listening to my ramble, Marilyn. firstname.lastname@example.org
Jon, December 18, 2000 - Hi everyone, I'm still sick and moving slow. To Autumn, I can't reply to you because your address bounces. Jon.
Joy R's December 18 reply to Ruthie A's December 11, 2000 - Hi Ruthie, When things go bad for us I have a saying that helps me get through rough times: "Lose everything but your faith in Jesus and you'll lose nothing; Lose your faith in Jesus and you'll lose everything." I will put you on my list of those for whom I pray.
To Jan S, you don't say how old your are. I started disability at age 49 and found only one company that gave insurance to folks under 65. There are some medical questions. Fortunately for me, at that time I wasn't as sick as I later became or I would of been denied. Try United American Insurance Company. Blue Cross Blue Shield did not offer at the time supplements if you were under age 65. In 1996 my supplemental insurance cost me about $100 a month but now exceeds $200. Still, having that supplemental has kept us of out of the poorhouse. email@example.com
Jan S' December 18 reply to Beverly C's December 15, 2000 - Hi Beverly, I just want to add my name to the "having anemic problems but don't know why" list. Prayers and blessings to all at Jon's Place. Remember that Jesus is the reason for the season! firstname.lastname@example.org
Carol M, December 18, 2000 - Hello everyone, I have a question to anyone out there in cyberland. I have recently been having spiking blood pressure and I am wondering what is the cause. I normally have very low blood pressure of 96 over 54 with a pulse of 96, but recently I have been experiencing spiking BP of 198 over 148, with pulse of 101 or even 210 over 160 with pulse of 120, and I don't know why.
Each time I have gone to the MD it is alright but then the next day it will spike again. I can't go to the MD every day in hopes that that it will happen then so he can see for himself. I am still taking 0.25mg Lanoxin, 12.5mg Coreg twice daily, 80mg Lasix depending on my weight with 5mg Zaroxolyn 30 minutes before the Lasix, and 81mg aspirin daily.
The doc doesn't think I know what I'm talking about and he kind of ignores the issue. One time I went to him and it was up. He said I was having an anxiety attack. I wasn't. I know what they are like and I know this was not the case. Also, I know how to take a BP and pulse, and I know how to read them. I have been taking them for years for my husband and I have learned to be very accurate. The spiking does not last long, maybe 3 or 4 hours, and then it comes back down to my normal.
Tomorrow - December 19 - I go for my first visit with an electrophysiology group. They are to evaluate me for an EP Study. I am still scared to death about this study but I guess I will have to go ahead with it. Jim, my husband, has become a complete nag about it. Nag, nag, nag. <g> I wonder if these MDs will be able to tell me why my BP is spiking or even if it is anything to worry about?
Does anyone have any suggestions as to why this is happening or maybe what to do about it? Does it happen to anyone else and what did you do about it? Should I worry? How high should it get before I call the doctor? Am I in trouble again? Please help if you can. Thanks, Carol M. email@example.com
Jackie S, December 19, 2000 - Dear Jon, It has been a long time since I posted but I wanted to drop you a line and thank you for the information on MyoVive. It sounds very promising. I am very well for a CHFer and I am very thankful every day. I want to wish you a joyous blessed holiday. God surely is proud of the service you do in his name. God bless to you and your family. Oakleaf999@aol.com
Joshua S' December 19 reply to Carol M's December 18, 2000 - Hi Carol, I can certainly understand congestion. I also take 80mg of Lasix but lately I get congested in the evenings, start wheezing, and may have to take another 40mg of Lasix; Like I just did this evening. However, usually by 3:00 AM I'm wheezing and up for the rest of the night. It makes you feel dragged out during the day. For some reason, my congestion clears up with exercise.
Anyhoo, I faxed my cardiologist today (I see him 12/28) and asked him to get me an appointment with Dr. Philippe Menasche in Paris. I don't know if he can or will but I'm ready to be a guinea pig or anything else to improve the quality of my life. If it wasn't for the deep love and friendship of Jesus Christ, I think I'd given up. Well, thanks for listening to my moans & groans. I hope God blesses you all and eases your burdens, Joshua. firstname.lastname@example.org
Joe's December 19 reply to Jon's December 18, 2000 - Jon, Don't you dare get sick. We need you too much. I am praying for you all the time. I think you remember the docs told me about 6 months ago that I no longer have CHF but I still have a badly leaking valve. I really don't see much difference. Maybe I don't have CHF but I still have to watch my sodium, take all the meds, eat right and exercise or all the old symptoms come right back with a vengeance. I will admit I no longer get dizzy when turning my head and can do a lot more work. God is good though, because Social Security said it doesn't matter, and I will still get SSD for the rest of my life. I sort of think it's because I just turned 62 and they don't think it's worth bothering with me anymore. I also just got my Medicare and medical card. Jon, take care of yourself. Joe Stevenson. email@example.com
Jon's December 19 reply to Joe S' December 19, 2000 - Yes, mommy. <lol> Couldn't resist that one. ;-) I hate to break it to you guys but I've been sick one way or another ever since starting this site years ago. This flu really is the pits though. It's hitting me in stages, so I'm able to get some things done here and there. I sure am tired of sore throat and "extra" fatigue though.
If any of you pooterific types out there know how to set up a list serv that will actually work, please contact me. It would be run on a Linux server (RedHat 7) and administered from a Windows 95 box through a web browser (I am guessing) with only one person having admin privileges. I have found several free scripts but one refused to allow proper confirmation of sign-ups, another is too complex for me to set up myself, and so on. Jon.
Walter K, December 19, 2000 - Hi, For over a month I have been having a terrible taste
in my mouth which even makes eating unpleasant - or worse. I mentioned it to my CHF doctor yesterday and she said it very likely is due to the ACE inhibitor Prinivil at 50 mgs daily, I was taking. She said all ACE inhibitors can do this and switched me to Losartan, which is not an ACE but has similar benefits (Jon's note: it's an ARB). She said it could take up to a month to get over the bad taste. I am posting this in case anyone else is having a similar problem and doesn't know what might be causing it.
I have not noticed any mention of this in this group before, which is surprising since nearly all of us are on ACE inhibitors. I had been taking Prinivil for quite some time without this effect but my dosage was increased about 6 months ago and maybe that did it. firstname.lastname@example.org
Linda Z, December 20, 2000 - Hi, I have a question for those who post here. Does anyone here have an interest in starting an Internet discussion group just for people with a CHF diagnosis. I run several discussion lists for other health related problems and find them very helpful. I am not interested in starting a CHF list but would be glad to help and advise someone else if there is an interest in forming such a group. Jon encouraged me to post this message so anyone interested please let me know, Linda Z. email@example.com
Jon's note: There can't be too many places to talk for us CHFers! The type list Linda means is done via e-mail and would be useful to many people
Brandy Lee's December 20 reply to Carol M's December 18, 2000 - Hi Carol, If you are using an at-home blood pressure monitor, take it with you to your doctor. My BP always runs about 88/57 and I kept getting outregeous readings of 146/116, etc. So I had my blood pressure monitor checked and it was really low on batteries which was causing the whole thing to act up; Or the monitor may not be calibrated right. If indeed your BP and your pulse are shooting up like that & your doctor isn't paying any attention, you should find a doctor who will listen to you! Blessings, Brandy. firstname.lastname@example.org
Phyllis A's December 20 reply to Phyllis W's December 12, 2000 - Hello to Jon and friends. First to Phyllis W, I have been taking spironolactone and Lasix and have not had a problem. I take 160mg of Lasix in the AM and 25mg of spironolactone, and 80mg of Lasix in the PM.
Also, I have not been to this message board in a long time for I have lately been diagnosed with another illness called fibromyalgia, and have been very tired and ill for awhile. Telling the docs, they just said get more rest. It had gotten so much worse that she insisted I have blood work and other exams, and came to this condition. I was told it is very much like Chronic Fatigue Syndrome. There is no cure and little is known about it. They just try to make you get more sleep with an antidepressant that doubles as a sleep aid. I'm told I don't go deep enough to dream sleep and therefore not to a healing state. Trauma can also cause this, like breast cancer treatment, my dad almost dying last year and an October of 1998 bus accident. So a lot is going on with me now. Please pray for me. I need to be strong to help others. I can't stay down, others need my strength. Love, Phyllis A. email@example.com
Jack B's December 20 reply to Beverly C's December 15, 2000 - Hi, I was anemic a couple of years ago. I was taking 350mg coated aspirin every day. The aspirin caused internal bleeding - 4 pints of blood. I stopped taking aspirin and my bleeding stopped, Jack. JackBrennan1@hotmail.com
Randy B's December 20 reply to Beverly C's December 15, 2000 - Hello everyone, I got CHF about 12 years ago when I was 20. I got sick real super quick and ended up having a heart transplant. It's been 11 years now and I'm doing great.
I did start getting sick about 3 years ago, vomiting every day once or twice, and saw all kinds of docs regarding this sickness. Finally they noticed I was borderline anemic, and it was being caused by my immunosuppressive drugs (Immuran). I started seeing a hemotologist and began receiving Epogen shots weekly. I then switched to CellCept instead of Immuran and I only had to get Epogen shots every other week. Within 2 months my vomiting stopped, I started gaining weight back and feeling much better.
Recently I became ill with the CMV virus I got from my donor heart. This was the sixth time since my transplant. I was treated with oral chemotherapy for 2 weeks at home - pills of Cytovene, a carcinogenic. After the therapy my blood level dropped again below 10, when I was averaging 13.5 with the Epogen shots. The doc upped my dose again and my blood came right back up, and I started feeling much better. The anemia made me vomit after awhile and also made me fatigued, in addition to being extremely sleepy. If a CHF patient can recieve Epogen I would highly recommend it. Energy is good to have. BStriperslayer@aol.com
Shane S, December 20, 2000 - Hey everybody out there in CHF land, I hope everyone's doing okay. I have just a couple questions maybe somebody else has experienced. First, when I turn my head sometimes I get a little dizzy and my vision gets kind of blurry. Second, whenever I bend over to tie my shoes or give one of my small children a bath I get very dizzy, out of breath, and it actually burns and hurts thru my chest, shoulders, arms, and back. I have told my doc but he doesn't seem to be to bothered about it. Maybe he would if he had to deal with it! Anyway, I was just wondering if anyone else has experienced this or can give me any advice. Thanks, Shane S. firstname.lastname@example.org
Jon's December 20 reply to Shane S' December 20, 2000 - Hi Shane, I have experienced this a few times. First was when I was having my ACE inhibitor and beta-blocker doses raised. It passed over a period of many months when my body became accustomed to the meds at those higher doses. This is called "postural hypotension." That's a fancy way of saying that when you move suddenly or rise up, your BP drops in a single hearbeat and your body says, "Whoa!" <g>
The other times I experienced this were mainly due to being too "dry." When you get a little dehydrated and have a weak heart besides, this can become common. I strongly suggest you either be tested for dehydration or insist that your doc lower your diuretic dose for a few days to see if this is happening. Likewise, you can increase your fluid intake to check it out.
Keep in mind that there can be other, more serious causes of this too. If it turns out not to be too-high meds doses or dehydration, keep pushing those docs until they nail it down! Jon.
Joe S' December 20 reply to Jon's December 19, 2000 - Hey Jon, Somebody has to look after you! Hey Jon, you probably know about colloidal silver and how it keeps you from getting sick. If you don't, just let me know and I'll tell you how to make it for free. The old phrase, "They were born with a silver spoon in their mouth" refers to the health benefits of silver. I sure don't know any other advice, my friend. I'm sure you do all you have mentioned on the board. Hey, do you take naps every day? That really helps, Joe S. email@example.com
Jon's note: I can't even sleep at night, much less during the day! <g>
Bill D's December 21 reply to Shane S' December 20, 2000 - Hi Shane, Maybe one of your carotid arteries are partially blocked. That may cause dizzy spells when you turn your head or bend over. It can cause TIAs or small strokes that can effect your vision. Have you had an echo done on your carotids? That may be your problem, Bill D. firstname.lastname@example.org
Tony's December 21 reply to Carol M's December 18, 2000 - Hi Carol, Regarding blood pressure, I've been taking my blood pressure an average of 10 times per day for about 30 months, giving me about 7500 readings by date and by time, which I've got stored on my PC, and I do reports and charts. I started keeping records because my BP would soar for hours or days, and I wanted to know more about my hypertension.
I found there was a link between allergic reactions and my blood pressure. For instance, I can just touch a piece of dust and my BP will soar and my heart will become more erratic. Certain dyes such as blue dye in new jeans also cause increases in my BP. I also found that my BP varied quite a bit during the day, and was always worse at night, starting about 10:00 PM. I have a higher average BP depending upon whether it's tree growing, grass growing or weed growing seasons. I suspect that my BP is affected by the level of pollutants in the air. If I don't limit my salt intake, especially snacks like potato chips and pretzels, my BP will be higher.
By looking at my BP data, I also found out that the meds that I was on weren't effectively controlling my BP. I've got a great heart doctor. He worked with my computer charts and reports and adjusted my meds until we reduced the "average" daily blood pressure readings. With a reduced BP, my other symptoms also improved. Since my BP is always higher from 10:00 PM through 1:00 AM, I take my scheduled midnight dose of Verapamil two hours early, at 10:00 PM. Since I've done that, I no longer have dangerous nightly BP peaks.
Also, my blood pressure is lowest about 3 hours after I take my dose of Verapamil and then starts to climb until I take my next dose. Just thought I would throw out my 2¢. Everyone is different. I think that it is very important to get one's blood pressure under control, especially if one has other heart disease. I don't believe anyone really knows what their blood pressure is doing if they just take it once in a while. Good luck with your health, merry Christmas and a happy new year to all, Tony. email@example.com
Autumn's December 21 reply to Robin Lynn's December 10, 2000 - Hi Robin, My 33 mm came from an echo. I was wondering what they told you about your pulmonary hypertension and how they're treating it if they are? Is your PH caused by a leaking mitral valve as mine is or is yours caused by something else? I thought my PH would decrease because my heart decreased in size but it stayed pretty much the same. I was really thankful though that it didn't go up. I wish you all happy holidays! Autumn. AmberDawn-Blzn@webtv.net
Jon, December 21, 2000 - Hi everyone, August, I think you are sending me a correct address but webtv's mail servers are not responding to my sendmail server at all. There is simply no way for me to get a message to you privately. I am truly sorry but when I have a question about a post and can't contact the person by e-mail, I don't post it. I apologize that it has hung you up so long through no fault of your own. It took me many, many tries to be sure this was the problem. Webtv and aol are the 2 biggest offenders regarding non-responding mail servers. When running a mailing list of about 800 people and another of about 600, I got 20 - 30 bounced messages minimum per mailing due to non-responding servers and networking difficulties. Probably 90% of those bouncers were webtv and aol. Jon.
Bill D's December 22 reply to Tony's December 21, 2000 - Hi Tony, Since my heart swelled up to 3 times the average, my blood pressure is over 170/65. I thought I'd complain about it so the doctor gave me Diovan Hct 12.5/160. That brought my systolic BP down to 140 but I felt awful! I think I need those 170mm highs and lows of 65mm to keep my blood pumping around. If I go below 150, I'm in trouble! Besides, I read that only 18% of people over 65 have their BP under control. What I have to worry about is arrhythmias because my heart is stretched so much. So far I've been lucky, Bill D. firstname.lastname@example.org
Jan S, December 22, 2000 - Hi, I have DCM,CHF, and COPD. My doctor has told me not to lift more than 5 pounds. I was at Walmart today and was trying to wait patiently in the very long and slow moving express lane. I noticed an elderly couple who had entered the store. He had a cane and she was frail but was attempting to lift a 20 lb bag of ice melt into their cart. She wasn't faring very well and I turned to the two gentlemen in line behind me and asked if one of them could possibly assist the elderly couple. They responded positively and one went over and spoke to the couple and placed the bag in their cart. He then offered to assist them with getting the bag to their car after she checked out. My response was to offer to allow her to get in front of me in line.
Then I tapped the shoulder of the young man in front of me who would be the next to go to the register and asked him if this woman could get in front of him. He turned and in a gruff, somewhat loud voice, he huffed and said, "Jesus Christ." I smiled a big smile at him and said, "Yes it is His birthday we are getting ready to celebrate isn't it?" He gave no more response other than to turn away, but then moved over to make room for the elderly woman to purchase her 20 lb bag of salt. I thanked the Lord many times over today for giving me that opportunity of responding with a smile and "Jesus story" to this young man today. Thank you Jon, for being so open about your faith in Jesus at this site and may we all have a special day on His birthday, Jan S. email@example.com
Jon's December 22 reply to Jan S' December 22, 2000 - Hi Jan, You're welcome. :-) I bought a CD last year by a rock band my daughter liked very much named DC Talk. One song has a chorus that goes like this:
"What will people think when they hear that I'm a Jesus freak?
What will people do when they find that it's true?
I don't really care if they label me a Jesus freak
There ain't no disguising the truth!"
Carol M, December 22, 2000 - Merry Christmas to everyone. I went to the EP doctors and had that EP Study done. It was a complete bust (Murphy's Law).
He said he tried everything to get an arrhythmia going but nothing happened. He couldn't even get the LBBB started. He stated that I don't even have an LBBB anymore. So much for "Once it's there, you always have it." He further stated that after looking at my history and after doing the echo in his office, he was sure he would be implating an ICD but since he couldn't get an arrhythmia going he couldn't warrant the implant. The echo also showed that my EF went down from 35% to 15%. Besides that, the echo showed that I still have the mitral, tricuspid and aortic valve regurgitation.
After the EP Study and while I was in the recovery area I started having V-tach and then V-fib. Don't you think it's funny that he couldn't get it going in the lab but I could get it going on my own? It took 3 hits with the paddles to stop the V-fib. Now I have burns on my chest. After this episode, my BP shot up to 210 over 188 and I had to stay in the hospital another day. I guess I'm just one of those crazy people in whom nothing is going to cooperate.
Now I've been scheduled to have a complete CT scan to see if there is a tumor somewhere. The doctors say that a tumor could be causing all of my symptoms and that my heart is not the problem at all. Do I wish for this to be true or do I want it to be my heart? I don't know anymore. I'll be having the CT scan the day after Christmas. What a hoot! So much for not worrying about anything during the holidays. I know that giving up is not an option but it sure is tempting. May you all have a wonderful Christmas and your families be together with Christ. It sure helps to know you are out there. Love, Carol M. firstname.lastname@example.org
Jon's December 22 reply to Carol M's December 22, 2000 - Hi Carol, There are many types of arrhythmia but they can all be classified as inducible or non-inducible. Failing to induce an arrhythmia during an EPS in no way means that arrhythmia will not occur spontaneously. This is shown over and over in clinical trials involving EPS and the distinction between inducible and non-inducible rhythm disturbances is made very clearly in these studies. Since your EP doc did not explain this to you, I'd say all his results are suspect. If it were me - and you're not me - but if it were me, I'd think about a couple more opinions on my arrhythmia and its causes. One or even 2 opinions would not be enough for me to quit having my heart's electrical system checked out. For what it's worth (very little), Jon.
Joe L, December 22, 2000 - Hi, I am 38 year old former bodybuilder and was recently diagnosed with HF due to idopathic cardiomyopathy. The HF specialists says it was probably caused by a virus. This is what was explained to me. I have predominately diastolic dysfunction characterized by elevated pressures. I have only mild systolic dysfunction with an EF of 45%. I also have mild pulmonary hypertension. The HF specialist said this is caused by an enlarging and stiffened LV that does not relax properly during that portion of the heart beat. I think I am getting the right answer. I am very symptomatic with shortness of breath, fatigue and palpitations. What do you think? JTLucido@aol.com
Dana L's December 22 reply to Joe S' December 20, 2000 - Hi Joe, I know how to make colloidal silver but what I need to know is how often and how much to take for preventative purposes. Also, the guy who showed me how to make it said that your batch will turn out best when you leave your silver in the longest. Is it possible to leave it too long or does it ever get bad? Thanks for anything you can tell me. email@example.com
Jon, December 23, 2000 - Hi everyone, Well, my flu is worse rather than better but I ain't dead yet! <g> However, if I disappear for a few straight days don't worry - I am just down from this awful stuff. I am not sure how to make people aware when pages have been updated, so for now I am going to post here when pages have been updated, with links. It looks unlikely right now that my mailing lists will get going again any time in the near future. List servs just aren't my area of expertise, apparently. So it goes. Here are the pages updated or added in the last few days
Tracey C, December 23, 2000 - Hi everyone and merry Christmas. I hope everyone has a wonderful holiday. First, has anyone been able to find low-sodium cheese? I have tried stores and online, and I can't find any.
Second, my doctor's virus theory appears to have been wrong. My mom was just diagnosed with DCM with an EF of 30%. So, it looks like familial DCM. On the plus side, the doctor says it looks like she may have had it for 20+ years and during this whole time she's taught yoga and aerobics 10 times a week. He thinks her body has simply adapted and doesn't want to put her on meds. I believe she needs the meds but she's rather holistic and won't take them. I, on the other hand, am working my way through the pharmacy. Again, everyone have a very happy holiday, Tracey. firstname.lastname@example.org
Debbie, December 23, 2000 - Hi, Has anyone heard of constrictive pericarditis? Is it curable? email@example.com
Tony's December 23 reply to Bill D's December 22, 2000 - Hey Bill, Perhaps your ill feeling when your BP goes down is a result of the meds that you are taking or the dosage, and not the lower BP. Has your doctor tried you on Diovan HCT 12.5/80 instead of 12.5/160? Perhaps the higher dose is causing you to feel rotten. If you can't tolerate the Diovan HCT, will your doctor try other meds that might do the job and not make you sick?
My primary BP drug is Verapamil and it also helps with my rhythm problems. I also take Lanoxin to help control my a-fib. I take Accupril, Nitro SR, and Lasix to help keep my BP down. It's taken years to get the right combination of drugs, the right dosage, and the right schedule. I take each drug at least one hour apart from each other. I separate the Verapamil and the Lanoxin by 3 hours. I do this because I get worse arrhythmias when I take the meds too close together. You say that your BP is 170/65. Is that an average BP? If you take your BP 3 times in one day, do you get the same reading? My 2 major goals are to reduce my BP and my arrhythmias so that my weakened heart has a better chance to rest and recover. firstname.lastname@example.org
Jon's December 23 reply to Tony's December 23, 2000 - Hi everyone, I don't have high BP so this is just a general reminder. Calcium channel blockers like verapamil should be approached with great caution if you have CHF. They can increase mortality considerably, as has been shown in clinical trials. That's why they are so rarely prescribed to CHFers. A calcium channel blocker may be appropriate in any one individual case but as a rule, if your doc wants to put you on one, start asking questions, fast and furious. Jon.
Phyllis A, December 23, 2000 - Hi to Jon and all of my friends here, I want to wish everyone safe and healthy holy days. Whatever the name, it is Jesus' birthday. God bless, Phyllis A. email@example.com
Luc D, December 23, 2000 - Greetings to all my friends on this wonderful heart forum. Merry Chrismas, Joyeux Noel, Prettige Kerstdagen, Gelukkig Nieuwjaar, Bonne Année, Happy New Year - from Fam Deseins luc, Belgium. firstname.lastname@example.org
Deanna, December 23, 2000 - Hello everyone, I too am a Christian who professes the Lord Jesus Christ. This is so great. I found you by accident. I am middle-aged and just found out I have CHF. The left part of my heart is enlarged and I have swelling in my legs and ankles, with fatigue and shortness of breath when I do just about anything. This has been ongoing about 2 - 4 months. In June of 2000 I was hospitalized for a "massive heart attack" (my doctor's words), then the diagnosis changed to no heart attack. I had a cath but nothing showed up. Now it is December and I am being told so much different stuff that it is really stressing me out.
The nurse practioner I see just put me on Aldactone at 25mgt a day. I am ok so far. I am losing fluid and am just really tired. I do not know what is really going on. She said I have CHF. I looked it up and have been searching for info. I understand it can get better, it can get worse, it can be managed, If anyone cares to respond with some suggestions or comments, I would appreciate your input. Merry Christmas and God bless you all, Deanna. email@example.com
Autumn's December 23 reply to Jon's December 21, 2000 - Hi Jon, Thank you for explaining things to me. I really feel a loss over losing some connection to the group because of this bouncing problem, and I really hate missing all the wonderful information you send out. I'm wondering if some of the changes you've made make webtv inaccessable, or if others with webtv are still able to receive from you? I know webtv can't access a lot of things but I don't know if your improvements would affect things coming in to webtv. If others with webtv can still receive from you I hope this is a temporary problem and they quit bouncing my messages from you. Thanks again Jon, and to everyone in this group, thanks for being there. AmberDawn-Blzn@webtv.net
Jon's December 23 reply to Autumn's December 23, 2000 - Hi Autumn, First I want to remind everyone that I am no longer sending any information out on any mailing lists and have destroyed all such lists so no one's privacy is breached. My mail client and host server were no longer up to the task and unless a list serv somehow magically appears full blown before me, the lists are no longer. So it goes,...
Autumn, I have made no changes to my e-mail so I have no idea what the problem really is. The error message is that webtv's mail server is not responding. I have not had this problem with anyone else's address to date that I know of. This is unrelated to web pages, which are separate from e-mail. I don't know if my web pages have any problems with webtv but if anyone knows HTML and runs my pages through a validator like W3, they will be pleasantly surprised. ;-) I receive your posts just fine, but cannot reply via e-mail to them.
Webtv and aol do not handle a lot of standards well or even at all, but that's out of my hands and also beyond my technical understanding. <g> Honestly, I think Linux hosts are also mildly flawed due to the open source foundation upon which they stand. My own site runs on Linux but there's nothing I can do about it since I cannot afford a Unix host. You can solve this by taking an http e-mail account like Hotmail to use with your posts but that's up to you.Jon.
Joe S' December 23 reply to Dana J's December 22, 2000 - Hi Dana, I take one glass of collodial silver per week. I also don't think you should leave the silver in the water more then 15 minutes or until it becomes only slightly cloudy. By the way people, last New Year's was man's y2k; this one is the one that is in God's timetable. Stay alert, Joe S. firstname.lastname@example.org
Jill S' December 23 reply to Joe L's December 22, 2000 - Hi Joe, Did you ever take anabolic steroids? Some bodybuilders who used them have ended up with all sorts of bad health problems 10 years down the line. Are you on diurietics? Or any medications called ACE inhibitors? Jilschrod@cs.com
Jon, December 25, 2000 - Merry Christmas, everyone; the day God started tasting life through the eyes of a man, so He could bring me home. I trust Him - He's walked a mile in my shoes. :-) Jon.
Jon, December 25, 2000 - Hi Mike W, Sorry but I don't have your address in my Contacts for some stupid reason and my last e-mail to you bounced so my memory can't be trusted. Thanks for the tips on list servs. Apparently, they're just not my cup of tea and I no longer have a Linux box at home, making it even more difficult. Jon.
Frank S, December 25, 2000 - Hi, I would be remiss, as a participant since 10/98 at this more than wonderful web site, if I did not extend my best wishes to everyone at Jon's Place for a very holy Christmas and a healthy and happy New Year. My prayers are especially for those among us whose struggle is much worse than ours. Later, Frank. email@example.com
Carol W, December 25, 2000 - Merry Christmas to all and to all a good night of sound sleep. May our loving Father bless each of us with continued strength and faith in the new year, Carol W. firstname.lastname@example.org
Walter K's December 25 reply to Tracey C's December 23, 2000 - Hi Tracey, Heluva Good Cheese, Inc., has a low-salt (8mg per ounce) sharp cheddar cheese that doesn't taste as good as the real thing but is pretty good. They also have cheeses with normal salt content so you have to read the label. We live on the east coast near Wilmington, Delaware and it is carried around here by Superfresh supermarkets, which used to A & P. If you can't find it where you live, they have an 800 number - 1-800-323-2188 - which might be able to tell you where you can find it. email@example.com
Jack B's December 25 reply to Tony's December 21, 2000 - Hi Tony, It seems to me that taking your BP 10 times a day is pretty excessive. Why not just take it once or twice a day and enjoy yourself the rest of the day? JackBrennan1@hotmail.com
Mary Lou L, December 25, 2000 - Hi, Let us remember that this is the day our Lord and Savior; Jesus Christ was born. Keep this day holy in remembrance of Him. I wish each and every one a very merry Christmas and happy holy season, Mary Lou. MLBinks@aol.com
Jim's December 25 reply to Tracey C's December 23, 2000 - Hi, You can order a low sodium cheddar cheese (55 mg per ounce) from Tillamook at 1-800-542-7290. firstname.lastname@example.org
Joe L's December 26 reply to Jill S' December 23, 2000 - Hi Jill, Thanks for the reply. I never took any anabolic steriods but I did take lots of over the counter supplements and diet pills to burn fat. To be honest, I never much paid attention to ingredients. If I thought something was working I would continue to use it. Really I have no idea what was in some of these concoctions. I know there has been a link to PH and some diet remedies. I do have secondary PH to the LV diastolic dysfunction so who knows? They have me taking Lasix, Cozaar (ARB) and they have decided to start me on Coreg when I come back from vacation. Thanks again. Happy holidays and God bless. JTLucido@aol.com
Jana B, December 26, 2000 - Hi Everyone, I just wanted to update you all on my son Mark and his CHF. He went back on our insurance effective 12/1 and was able to get in immediately to see my doctors. They changed his meds around and gave him some new ones and he said he feels "good enough to work" most days. He could get his old part-time job back but I am discouraging it for the time being since he has applied for Social Security Disability. He needs to rest anyway. Thanks to all of you who prayed for him; I appreciate it and he really appreciated it. This disease has brought him closer to God and that is a good thing.
As for me, my doctors think I need to start coming off my meds. They say that my heart seems to have reversed itself and that I am on too many meds. I haven't had an echo done since my stroke last year and they really haven't done any tests on me. They seem to be going by how I look and feel. I have a real problem with this. My thought is "if it ain't broke, don't fix it." Before, my HMO was threatening to not treat my CHF and other heart problems at all because I refused a heart that was compatible for me back in March. I felt good then and knew I didn't need a transplant. They called me "uncooperative" and a few other words I can't recall. Now, they say my heart has "reversed" itself. If it's not one thing, it is another.
I told the local docs here that the only way I would consider coming off my meds is if they sent me back to UCLA's Cardiomyopathy Clinic and that doctor there said I should come off them. Sometimes I know more about this disease than the local doctors here. They have even asked me step-by-step, day-by-day, what I have been doing so they can tell their other patients. I am not too inclined to have them make such a big decision for me. But since I have an HMO I can't just drive up to UCLA whenever I feel led.
Anyway, that's my story and that's my update. Keep us in your prayers and know that you are all in ours. Happy holidays to every one one of you and I hope the New Year brings nothing less than continued improved health for you all, Jana, age 37, CHF, DCM etc,... (son Mark, age 20, CHF, DCM) JByers4u@aol.com
Jon's note: you're right - stick to your guns Jana!
Donna Z's December 26 reply to Walter K's December 25, 2000 - Hi Walter, Boar's Head also has a very low sodium cheese that I get from Genuardi's markets. It's called Boar's Head Lacy Swiss, which is very low in sodium and it doesn't taste bad either. I'll find out for you exactly what the sodium content is. Boar's Head also carries a very low sodium roast beef that I use for sandwiches. They also make a no sodium roast beef but I've been unable to find it anywhere. See you soon, Donna. email@example.com
Tony's December 27 reply to Jack's December 25, 2000 - Hi Jack, You asked me why I take my BP 10 times a day instead of just a couple. You commented that if I only took it a couple of times per day I could enjoy the rest of the day. It's a good question and comment! Thanks.
Let me explain how I got into this BP ordeal. I first started taking my BP just when I felt really rotten and weak. I didn't know that when my symptoms got really bad my BP could also be very high. Taking BP readings told me that my BP at home was quite a bit higher than the reading at the doctor's office. It also told me that my BP was not under control. I consider the control of BP critical to surviving major heart disease and preventing other organ breakdown.
I wanted to know more about my BP. So I started measuring it a couple of times per day. Wow! I found out that BP, especially mine, varied considerably during the day. So I increased the number of readings. I found out that my BP was much higher than I expected most of the time. In other words, my BP was dangerously out of control and my doctor didn't know this. Why didn't my doctor know this? Why did I have low BP readings at the doctor's office? The answer was simple. I took my BP medicine in the morning, a couple of hours before my doctor's visit. When the doctor took my BP, it was exactly when the BP medicine was most effective. Also, as I have found out, the doctor's location is a clinically superior environment to where I live.
By taking my BP 10 times per day, I have found out which meds are most effective in controlling my BP and how to take my meds so that they are most effective. I have also been able to significantly reduce my BP and my symptoms so I can enjoy my days more. I am constantly making adjustments to my medicine schedule and lifestyle in order to reduce my symptoms and my BP. It won't cure my significant heart disease but it improves my outlook and my symptoms. It gives me a lot more hope for the future. I feel that at least I am doing something positive to fight this nasty disease(s). Fortunately, I've got a great, understanding heart doctor who really works with me.
Lastly, how can I take time off from my battle against heart disease, when the disease doesn't take time off? Jack, thanks for the question. You caused me to put my experience into words and that is exactly what Jon's CHF site is all about. firstname.lastname@example.org
Jon's note: Tony, it may help if you explain about BP readings in the doctor's office versus at home, and why it makes a difference to your BP measurement. You sound as though you have the opposite of white-coat hypertension. <g>
Ginger's December 27 reply to Jana B's December 26, 2000 - Hi Jana, Stick to your guns as Jon said. I was stable for 2 years with an EF at 55% and a normal heart size and normal echos. Through all the stress I ended up losing 36 lbs and my BP dropped really low on the meds. The doc decided my cardiomyopathy was reversing itself so he dropped my meds by 65%. I went from 30mg a day of Ace inhibitor to 5mg, with similar reductions across the board.
I just had an echo and my EF went from 55% to 40% and my heart size went from 5.4 to 5.7. He says it is due to the drop in meds so now I am going through the process of titrating them back up. We all know how that feels. He thinks the numbers will come back up and that this is just a setback due to medication drop. I pray to God he is right.
So be real careful when they decide to start dropping meds because they "think" your heart disease is reversing or that you are better enough to do so. Tis drop hit me hard mentally and physically. So please keep me in your prayers as you all know I didn't need any more stress or grief in my life right now. I am scared that this time the numbers won't come back up. I was scared when he dropped the meds down and I told him so, but he said he would watch closely; Well, I guess not closely enough, huh?!
Thanks for leting me vent, you all. Sometimes lately I feel like I just want to give up. I am tired of hurting, mentally mostly and now with the fatigue being back I almost don't care which way it goes. So Jana, please be careful with what they do. Stay well you all and know you're in my prayers daily. Hugs, Ginger. email@example.com
Christina, December 27, 2000 - Hello all, I'm sorry it's been awhile but I had open heart surgery on November 13th and it really knocked me out for awhile. When I woke up in recovery, I couldn't feel my left arm. I was then told that I somehow pinched a nerve in my neck during surgery. Recovery has been slow, with physical therapy for my arm. My mitral valve had a leak as well as a tear which they were able to repair rather than replace. At least all that is now repaired. I have a doctor's appointment for January 3 for a stress test.
I still take all the same meds. Does this mean I still have CHF? I don't understand; If my mitral valve problem is repaired, why the CHF? Is anyone out there with the same? Jon, I hope you are feeling better, Cristina. firstname.lastname@example.org
Dick W's December 27 reply to Beverly's December 15, 2000 - Hi, Four years ago when I started with my present cardiologist, I was hospitalized for a bunch of tests. I was very anemic and they did GI studies from both ends. The hematologist who monitors my Coumadin was very concerned. The result was that they found nothing. Oh, they did learn that hypothyroidism was masking underneath my CHF (same symptoms, plus rasping cough which my previous doc had missed). At that time, I had an EF of 30% and constant lethargy, lack of stamina and SOB. I started a nightly multivitamin plus iron with my Coumadin and lovastatin. The anemia got better. Next visit, ask your cardiologist or hematologist if you can try the multivitamin plus iron. Some conditions don't have explanations, they just seem to be there. Dick W, San Antonio, Texas. email@example.com
Jon, December 27, 2000 - The following pages on my site have been updated:
Tracey C, December 28, 2000 - Hi everyone, Jumping on the being taken off meds bandwagon, my doctor has said that if my next echo in March goes well he'd like to start taking me off meds. My EF is 55% and I've only had this for 5 months. This sounds a bit premature to me. Reading past posts here I'm a bit hesistant, even though it sounds great to be taken off, as is my husband. I know from this site that I should remain on an ACE inhibitor but Jon, do you know if Lanoxin and Coreg have as great an impact if stopped? I wish everyone a great new year! Tracey. firstname.lastname@example.org
Lee's December 28 reply to Cristina's December 27, 2000 - Hi Christina, I had surgery in December of 1987 where 7 bypasses were made. I had heart failure when I came out of it and that was the first time it had been mentioned, even though I had suffered 5 previous heart attacks. I used to tell people that was my hobby. <g> As I understand it, my heart was enlarged and had a lot of scar tissue. The CABGs apparently don't change that problem. Be careful, good luck, and make sure you have good doctor. I wish I had one, Lee. email@example.com
Joshua's December 28 reply to Cristina's December 27, 2000 - Hi, I also have CHF, also CVA with my left arm paralyzed, and a mitral valve leak. My EF is now up to 25%. At this stage in my life, I thank God that I have an intellectual friendship and relationship with Jesus Christ. It's not all that easy to achieve, believe me. I think everyone should read the book "The Power Of Your Subconscious Mind" by Dr. Joseph Murphy. It is a masterful instruction book on how to pray. Getting back, I don't think the correction of the mitral valve problem will eliminate CHF. God bless. firstname.lastname@example.org
Rick M's December 28 reply to Tony's December 21, 2000 - Hi, I wonder if there could be a significant calibration dichotomy between your home BP machine and the one used by your doctor. Why not take your home instrument with you when you next see your doctor, and see how the readings compare? Good luck. email@example.com
Maggie's December 28 reply to Jack's December 25, 2000 - Hi Everyone, I want to thank Jim for the information on low sodium cheese. I called Tillimook today and ordered several packages. They were very nice to deal with. I have found low sodium Swiss cheese here in the Midwest but not cheddar. I hope everyone has a happy and healthier New Year. We're expecting 5-10 inches of snow tomorrow, and it has been cold! Maggie. firstname.lastname@example.org
Jack's December 28 reply to Tony's December 27, 2000 - Hi Tony, After my open heart bypass surgery my surgeon advised me not to become a "cardiac cripple." I asked him what he meant. He replied that I should not dwell on my operation but be careful and just enjoy life to its fullest. I am concerned about my blood pressure too, but I also know that it flucuates up and down all during the day. To know the exact numbers at any time during the day is useless to me. In fact, this in itself (seeing a high reading ) can cause additional stress on our system, and this additional stress is not good for our system, causing damage itself. I see no reason to live in a blood pressure taking cocoon every day. There is so much more to life, why not live it? Jack. JackBrennan@hotmail.com
Jon's December 28 reply to Tracey C's December 28, 2000 - Hi Tracey, Coreg should not be stopped cold, but gradually, in ever decreasing doses. If you have coronary artery disease, it should be done even more cautiously. When reducing my own Coreg dose, I did find some increased fatigue and have since slowly rasied the dose back up, although only to half what I once took. It's all very individual. One thing to keep in mind is that only one drug should be reduced and then stopped at a time, so that any effects - good or bad - can be correctly attributed to the proper drug. I had no trouble stopping digoxin or Aldactone.
I think we are seeing a "learning phase" with doctors about drug therapy and "improved" CHF. I believe it will be discovered that drugs must be continued in most patients regardless, even if at lower doses. This is something my own CHF doc and I agree on and I have been told in no uncertain terms by him that regardless of my improvement in numbers or how I feel, an ACE inhibitor and a beta-blocker will be continued. I'm all for that myself. Jon.
Jon, December 28, 2000 - These pages on my web site have been updated:
Ben B, December 29, 2000 - Hello, I encourage everybody, particularly women with PPCM, to read the article on longevity in women with PPCM on the Heartbytes page. email@example.com
Ophelia, December 29, 2000 - Hi everyone, I just to let you know that I received the results of my echo today and I am now at 52% up from 10% nine months ago. I'm pretty excited about that and I am currently in cardiac rehab and doing fairly well. I'm surprised at how little strength I have, but I'll get there. Since I'm not in the running for Social Security due to my EF being high, I guess I'll return to work once my rehab is over. Take care. firstname.lastname@example.org
Kathy, December 29, 2000 - Hi, I am wanting to find a CHF specialist in the Durham, North Carolina area. I currently live in Dayton, Ohio but am trying to relocate to Durham. I am currently using a cardiologist and believe I would get better information and care if I could see a CHF specialist.
I had CHF in 1986. I have a blocked left bundle branch. In the past 2 years my ejection fraction has decreased from 35% to 20%. The cardiologist believes this is due to a virus and has said there is nothing he can do to reverse or keep this from deterioration continuing. I would appreciate any info anyone is willing to share. Thanks, Kathy. email@example.com
Vee's December 29 reply to Maggie's December 28, 2000 - Hi, Imported Swiss cheeses like Emmentaler usually have really low sodium, more so than domestic. You can get them at places like Costco. It was great to learn there is low sodium cheddar out there too! firstname.lastname@example.org
Terri's December 30 reply to Kathy's December 29, 2000 - Hi Kathy, North Carolina is a great place to live but it's not such a great place to be sick. Make sure you find a specialist and confirm that your insurance will cover care by the doc of your choice at Duke or UNC Hospitals. We have Cadillac health care available to us in theory here in the RTP area but most of the big employers' health coverage won't spring for it. If you're going to be working for one of the big companies in RTP, then you may have to forget getting access to Duke.
Another problem I've encountered is the insistence on getting everyone back to work, despite fatigue and other symptoms, once that EF nudges above 30%. I'm only home now because my even my husband (who hates being the only earner) acknowledges that I couldn't work in my current shape. I've talked to CHFers in other parts of the country who say that their doctors are more than willing to work with them but all I've encountered is "the numbers say you're no longer disabled."
I would never discourage anyone from moving here to God's country, but forewarned is forearmed. I hope you can get all your medical ducks in a row and come on down. (Can ducks be medical or did I just create a bizarre new metaphor?) The weather's great, the economy's booming and the beach is only 2 hours away! Best of luck, Terri.
PS. Choose your school district carefully if you have young 'uns! A few miles can make a major difference around here. email@example.com
Jon's note: RTP?
Karen K, December 30, 2000 - Oh Boy! I had an appointment with my doctor today because I hadn't seen him since March and I needed to have several prescriptions renewed. Since I hadn't had any blood work done since then, he suggested perhaps it would be a good idea. Interestingly, I actually left the clinic forgetting the blood work and had to go back and find another parking place. In a nutshell, my potassium level is high and I had to take some medication tonight that works in the colon to eliminate potassium from the body. Yucky stuff, it was. I have to go back Tuesday for more tests to determine what is causing the elevation in potassium.
I've had no symptoms, no irregular heart beat, no swellling. My doctor thought I was doing very well. I even told him that I checked my weight very regularly and if it appeared I had gained more than 2 pounds I took an extra Lasix. He said that would be what he would have told me to do if I had called and asked and that it was quite appropriate. Now this stuff with the potassium. I have a feeling it could be diet-related. I've been eating a mixture that contains peanuts over the past week; also raisins, and both are high in potassium. Guess time will tell. I'd appreciate comments, Karen. firstname.lastname@example.org
Barbara P J, December 30, 2000 - Hi, Back in April I ordered via Amazon the "No-Salt, Lowest-Sodium Cookbook" by Donald A. Gazzaniga. It has now been released and I received my copy yesterday. I've read some of the recipes and they sound great so am looking forward to trying them on the family.
Jon, I want to thank you for this wonderful site. I am approaching the 5 year mark (in 20 days) and hope to see 5 more. As a note, today I received my second denial of SSD and I applied in 8-99 so guess it's to an attorney at this point. Barbara. email@example.com
Vee, December 30, 2000 - Hi everyone, I've been in the leaky boat club for about a year and a half, with DCM and an EF of 10-15% when diagnosed. I take most of the usual meds: lisinopril, digoxin, Lasix, spironolactone, plus nifedipine. My biggest problem was getting my blood pressure under control. At one time it was higher than 200 over 120 much of the time. It wasn't till I had a bone scan - totally unrelated to the heart thing -that I found out I was very calcium deficient. I started taking calcium supplements and got dairy foods back into my life. I had kind of given them up, especially with the low-sodium diet. My blood pressure started to stabilize.
I don't think calcium deficiency was the only thing going on but people with high blood pressure should definitely be heads-up about calcium! Apparently it's a factor for some people with hypertension, especially very sodium-sensitive people. Why is this such a well-kept secret? Has anyone else experienced this? I don't know how great the research is but when I started looking, I did find literature on Medline. My cardiologist acknowledges there can be a connection, my primary care doc gives me puzzled looks.
Anyhow, thank you so much for this great site! I've read through a lot, including some of the old posts, and learned so much here. Hey Jon, great wallpapers! (I'm redecorating). Best wishes to everyone for the new year and the real new millenium. More later. firstname.lastname@example.org
Bill B, December 30, 2000 - Hi, Happy New Year! I am a new guy here and would like to chat with someone who can help and maybe I could help too. I am a 44 year old retired police officer and have had 5 MIs with one jump-start, one bypass, 6 stents in the LAD, 9 angioplasties, and was told that I have a 40% chance of 5 more years. I am going to beat the 5-year thing because I know God wants me around for some reason. My best friend lives 1500 miles away and she tries so hard to help and does so much (I love you for that) but can't feel what it's like to be me. I hope to hear from someone who would like to chat. Thanks, Bill. email@example.com
Joshua's December 30 reply to Jon's December 28, 2000 - Hi, On 12-29 I was in town and had seen my cardiologist for an echocardiogram, had blood work done, a chest x-ray and a PFT (pulmonary test) done. Afterward I had to transact some business. On the way to transact that business, as I was driving, I almost passed out with searing stomach pains in my whole stomach area and I almost threw up. My wife took me to the nearest hospital, which was the same one where I had all the tests done earlier and is the one whewhere my cardiologist has offices. However, he was gone for the weekend.
The ER doctor did an EKG several times, an ultrasound of my stomach, and blood work. After 7 or 8 hours he tells me that I have far excessive creatinine in my kidneys. He says the cause is my Vasotec, my ACE inhibitor. He said that if I didn't get off it now, I would be a candidate for dialysis! He conferred with my cardiologist who agreed with the diagnosis. So I quit cold. I don't know how this is going to work. I don't know if I feel better or not.
Two weeks ago I asked my primary care doc to schedule blood tests, especially to check my liver and kidney function. Blood was drawn but he'd ordered a Chem 7, which does not cover the liver or kidney. I checked my BP twice today and so far its been steady at 140 over 73. At the ER it was 94 over 56 with pulse 50. So I don't know how the sudden stoppage of Vasotec is going to be. The ER doc said that all ACE inhibitors can cause this. I thought things were changing dowhill for me but I never suspected this. My kidneys work okay. I take 80mg of Lasix per day. I would suggest that all of you demand proper kidney blood work from your docs.
Well, in closing I wish everyone on this site and especially Jon, a very happy new year! God bless all, Joshua. firstname.lastname@example.org
Jon's December 30 reply to Joshua's December 30, 2000 - Hi Joshua, I agree about the importance of regular blood testing. This should include a urine test also. All ACE inhibitors can cause many side effects as can all heart medications. Drugs that affect the heart are serious stuff. However, meds cause dangerous side effects in remarkably few patients. I have stopped 2 heart meds due to side effects and reduced a third but I would strongly recommend anyone not having such problems to take those same 3 drugs. It's all very individual - as your story shows so well.
It's important to remember that acute circumstances may call for immediate solutions. Tracey's situation was a matter of improved numbers over time and withdrawal of heart meds on the assumption she would stay "improved." It's a course of action seen here many times and it usually causes a slide back into heart failure to some degree. Regardless, beta-blockers should never be withdrawn quickly unless absolutely necessary to save life! To stop them "cold" can actually kill you. ACE inhibitors are not lethal when stopped all at once but unless acute emergency demands it, should also be withdrawn slowly; Just good medical practice.
And everyone should definitely have blood tests every 3 months! Thanks for the reminder - we all need one now and then!Jon.
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