Autumn 12-1 new doc tells a different story & more
Carol M 12-1 going to have that EP Study after all
David A's 12-2 reply to Carol M's 12-1 EP Study, questions about abdomen
Jon's 12-2 reply to David A's 12-2 abdominal symptoms - I hope others also reply
Jon 12-4 well,...
Autumn's 12-4 reply to David A's 12-2 pain under right ribs
Joshua's 12-4 reply to Autumn's 11-28 tooth & gum care
Rachel S 12-4 intro, book that I wrote
Brandy 12-4 my EF is way up!
Josh T 12-4 has anyone heard of this?
Phyllis A 12-4 I have a new e-mail address
Ben B's 12-5 reply to Brandy's 12-4 that's great news!
Wayne S 12-6 flu shots, helping others & more
Ben B 12-6 don't ignore the other information here
Jon 12-6 thank you & more
Carol M 12-6 going to see an electrophysiologist
Brenda George 12-6 chat room question, bleeding gums & meds
Robin Lynn 12-7 chest pain, pulmonary hypertension & high BP questions & more
Terry T 12-7 chest pain & GERD & CHF
Beverly C's 12-7 reply to Carol M's 12-1 it turned out to be my gallbladder
Gus R's 12-7 reply to Brenda George's 12-6 chat times
Judy S' 12-7 reply to Carol M's 12-6 electrophysiologists, generalizations
Chris' 12-7 reply to Rachel S' 12-4 seek a-fib & cardioversion advice, & more
Jim's 12-7 reply to Brenda George's 12-6 time zones
Shane S 12-7 CHF statistics & other questions
Jon's 12-7 reply to Shane S' 12-7 CHF statistics
Gail C 12-7 seek CHF doc & info about west Knoxville
Maurice K 12-7 about that 5-year life expectancy thing
Joshua 12-7 sinus drainage questions & more
Wayne 12-7 is anyone in omapatrilat trial?
Shane S 12-8 looking for e-mail info, some questions
Autumn's 12-8 reply to Robin Lynn's 12-7 PH, activity restrictions & more
Shane S 12-8 can I work while waiting for SSD?
Audrey S 12-8 intro
Joshua's 12-8 reply to Terry T's 12-7 what does GERD stand for?
Tracey C 12-8 has anyone tried this cold and flu med?
Robin Lynn's 12-10 reply to Autumn's 12-8 thanks for info
Robert Farish's 12-10 reply to Mike J's 11-28 hope for CHFers
Gus R's 12-10 reply to Shane S' 12-8 disability, financial assistance & more
Anna's 12-10 reply to Shane S' 12-8 disability info
Donna Z's 12-10 reply to Tracey C's 12-8 cold and flu medications
Felix O 12-10 vaccinations questions
Jon 12-11 mailing lists, anti-virus software
Robert Farish 12-11 further update, second opinions
Jon's 12-11 reply to Robert Farish's 12-11 heart size
Walter K's 12-11 reply to Donna Z's 12-10 saline nasal spray question
Shane S 12-11 thank you
Ruthie A 12-11 homeless but happy
Thelma 12-12 insomnia & meds questions
Jon's 12-12 reply to Thelma's 12-12 insomnia & Lasix
Phyllis W 12-12 does anyone take spironolactone & Lasix?
Ed 12-12 seek ICD experiences
Anna 12-12 seek SSD experiences
Vickie K 12-13 when to test my kids for familial HCM?
Taavi K's 12-13 reply to Phyllis W's 12-12 spironolactone & Lasix
Dave K's 12-13 reply to Anna's 12-12 using an attorney for SSD claim
Donna Z's 12-13 reply to Phyllis W's 12-12 Aldactone & Lasix
Anita's 12-13 reply to Ed's 12-12 ICD experience & Url
Doug K 12-13 MyoVive ordering question
Jon's 12-13 reply to Doug K's 12-13 MyoVive
Karen K's 12-13 reply to Phyllis W's 12-12 Aldactone & Lasix
Jon 12-13 Aldactone
Milt 12-14 cholesterol levels questions
Doug K's 12-14 reply to Jon's 12-13 MyoVive
Jan S 12-14 seek Medicare advice
Jeanette 12-14 upcoming vacation & more
Jon 12-14 MyoVive update
Bill D's 12-15 reply to Jon's 12-14 questions about MyoVive
Doug K's 12-15 reply to Jon's 12-14 MyoVive
Beverly C 12-15 questions about anemia
Donna Z's 12-15 reply to Walter K's 12-11 saline nasal spray
Jon's 12-15 reply to Bill D's 12-15 medical foods
Jon's 12-15 reply to Donna Z's 12-15 saline nasal spray
Richard B's 12-15 reply to Phyllis' 12-12 Aldactone & Lasix
Jon's 12-15 reply to Richard B's 12-15 breast enlargement, breast pain, and meds
Autumn, December 1, 2000 - Hi, Yesterday I took the results of my recent echocardiogram to a different cardiologist. His opinion was very different from the first doctor's. He said I am no longer in heart failure. My heart has come down in size to the "upper limits of normal" and its pumping capacity is good. My 3 valves are still leaking and I still have mild Pulmonary Hypertension, mild asthma, AV block, and bradycardia. I could re-enter heart failure at any time from these conditions or I may go along okay for a long time, but he says my regular exercise goes a long way in keeping me out of heart failure.
He says there is no reason for me to be put on additional drugs at this time and when and if I go into heart failure again, I am not at "the end of the road as far as treatment goes." (as my other doctors told me). When needed, there are other drugs I can take. Also, he said that if I go into heart failure again he will go in and repair at least the mitral valve. I sure don't understand how the same facts can be viewed so differently from different doctors. I never felt secure with the information from the first doctor. He was the one who sent me home a year ago without treatment, telling me I had Mitral Valve Prolapse, but when I got copies of my medical records I learned I had CHF and Pulmonary Hypertension. Still, I'm supposed to go there because they are "in our plan."
In October of 2001 we are going to switch plans. I am very pleased about the news and feel even more encouraged to maintain my exercise and diet. It is so nice to be given hope instead of despair. I plan on staying connected to Jon's Place and continue to learn. I have a reprieve, at least for now, and to try to keep it I still need to be involved and keep doing the necessary things for my heart. Thank you all for being there. I really appreciate all of you. AmberDawn-Blzn@webtv.net
Carol M, December 1, 2000 - Well, guess what, gang? I finally got up the courage to call and get an appointment with an EP group for that EP study. It's not until December 19 so that still gives me some time to back out. Wish me luck! email@example.com
David A's December 2 reply to Carol M's December 1, 2000 - Hi Carol, Good luck with the EP study. It's really not that bad. I had both a heart catheterization and an EP study done on the same day. I figured since they were already in there, do them both if they can so I don't have to revisit the procedure lab on another day. Both procedures went well and the transfer from one lab to the other was coordinated with not too long a wait.
I have a question for the group. Has anyone experienced abdominal pain during or after walking? At times I've experienced pressure in that area which feeling like it is pressing against my right lower ribs. This experience sometimes makes me feel some tightness in the area and shortness of breath. Has anyone an explanation for this? I will be seeing my doctor this Monday and ask the same question. Regards. DEZEN@worldnet.att.net
Jon's December 2 reply to David A's December 1, 2000 - Hi David, That is the general area of your liver - lower right side of the ribs. Livers tend to swell in some people before any other part of the body when fluid accumulates, and also in people with right-sided failure. This was my first symptom before my original diagnosis. Do extra diuretics relieve this? I have no idea if this is the cause in your case, but thought I'd mention it. Jon.
Jon, December 4, 2000 - Hi everyone, Well, my daughter is home sick with the flu and I'm feeling none too well myself. Posts may go up or may not, but if so, it'll probably be a slow process. Still, breathin', still ornery, though. ;-) Jon.
Autumn's December 4 reply to David A's December 2, 2000 - Hi, As a kid, I'd get that pain under my right ribs every fall in gym class until I got adjusted to the exercise. Also, a year ago when I began my exercise program I'd get that pain and sometimes it was pretty bad. It took quite a few months into my exercise program before it went away. I am however getting it occasionally at non-exercise times if I've been eating fatty foods. It feels like gallbladder pain. I'm only speaking from my personal experience. I have never asked a doctor about it. I just know that when it's from exercise I'll get used to it and if it's from fat in my diet I'm quickly encouraged to clean up my diet. AmberDawn-Blzn@webtv.net
Joshua's December 4 reply to Autumn's November 28, 2000 - Hi, I'm new at this site, so I hope this is okay. I have CHF and to protect my teeth I use 2 oz of hydrogen peroxide and 5 oz of Listerine in my filled Water-Pic container with hot water to "water-floss" my teeth each night. My dentist invariably complements me on the condition of my gums. I have lost no teeth. I am 66 years young. God bless. firstname.lastname@example.org
Rachel S, December 4, 2000 - Hi, At age 33 I survivied an episode of Sudden Cardiac Death. I now have an implantable-cardioverter defibrillator that monitors my heart and helps prevent another episode. I was left visually impaired from that initial episode. When this first happened to me there was no literature which spoke to the personal aspects of adjusting to and coping with this new life change. So after lots of encouragment I wrote a book which was published in July of 2000. It was written to help inspire anyone to make the most of their life and help show healthcare providers how they impact treatment and recovery. If you want more info, please check out the book review at my website at http://suddendeathsurvivor.homestead.com/. My best wishes to all of us in this holiday season! Sincerely, Rachel. email@example.com
Brandy, December 4, 2000 - Hi, A few days ago I was sogging around depressed and today I am on top of the world. Although I know it is not a clean bill of health, I got some great news from my echo today. My EF is 56 to 57% and my heart is no longer enlarged. What a blessing! firstname.lastname@example.org
Josh T, December 4, 2000 - Hi, Recently the AHA had a meeting in New Orleans. Of great interest was a report by a Dr. Philippe Menasche of Bichat Hospital in Paris. Dr. Menasche removed a bit of muscle from a 72 year old man with severe heart failure, grew the tissue in the lab to create millions of cells, which were injected into the damaged area of the heart. This guy had very good results. Hey, let's charter a plane and go see about this! Seriously, has anyone else heard about this? Any info? Please ask your doctors. Thanks, Josh T. email@example.com
Jon's note: See this page and this page
Phyllis A, December 4, 2000 - Hello Jon and all, I have been off the Internet for awhile and I now have new e-mail address. You can also reach me at firstname.lastname@example.org. I pray for you all every day. God bless. email@example.com
Ben B's December 5 reply to Brandy's December 4, 2000 - Hi, I so happy to hear about your improvement. It isn't 100% out of the woods, but pretty close. I hope anybody who would dare to quote a 5 year survival statistic to anyone, let alone a woman with PPCM, will read about your experience. I have seen so very many times women with PPCM get dramatic EF improvement very quickly after going through agony over this moronic statistic. I hope anyone who is quoted this statistic will immediately inform the person or web site or source of the information that they are spreading voodoo statistics. Sorry, but this is really my pet peeve. firstname.lastname@example.org
Wayne S, December 6, 2000 - Hello Everyone, I finally got a flu shot. I stood in line for 5 hours. There was a man behind me who had a bad leg. By the time we got to where the shots were being given out he was in real pain. So I let him in front of me. There was a lady and her daughter in front of me and they let him in front of them. There was a young man in front of them and he would not let the man in front of him. It made me very angry and I held my temper and just commented to him that some day he might need help too. I just think we should all consider our fellow man. I know we are all in a hurry to get things done in our lives. I finally got an answer on my two ACE inhibitors. I discontinued lotensin and am now on accupril. I sure hope you do not catch the flu Jon. God bless everyone. Wayne S, CM, CHF. email@example.com
Ben B, December 6, 2000 - Hi, I want to encourage everybody to read all the studies on Jon's site. When I found this place I first read only the message boards, which are nice in having people help other people out, but every other web site I went to usually started off by telling me I was going to die real soon. I kept wondering, "where do they get these statistics?" Then I noticed all of Jon's pages on medications, surgeries, etc. All these have real studies, under double blind conditions, which show that it is a lot more complicated than this and there is a lot of reason for hope. After seeing so many anecdotal stories about Coreg on the message board, I went to the studies on the Coreg page and saw the remarkable results the drug had in trials and this encouraged me to bring it up to my doctor. What I'm trying to do is encourage people to use the whole site. As Marc Silver says in his book, the best thing about Jon's Place is "content, content, content." firstname.lastname@example.org
Jon, December 6, 2000 - Hi guys, Well, I have the flu, I'd say. Bummer. I'll putter around the site and hopefully get posts up here and there. I'd like to thank everyone who helps me and helps the other people who come here. There were 127,937 of my web pages viewed last month, which astounds me no end (that's 292,196 "hits"). I will have to start my mailing lists over soon from scratch due to technical difficulties but will let you know when I get to it. I just wanted to say that I'll be slower than usual for at least a few days and to say thank you for making this site worth all the effort. :-) Jon.
Carol M, December 6, 2000 - Hi, Well, I went to my MD yesterday and informed him that I had made the appointment with the EP doctors. He kind of grinned and said enjoy. I asked him what he meant by that and he told me that electrophysiologists are a special breed of doctor. They kind of enjoy inflicting pain and that to be in that kind of speciality, it is sort of a requirement. Now of course that is just what I needed to hear, being that I am so scared of this study. I can't seem to win for losing. email@example.com
Jon's note: your doc is full of it <g>
Brenda George, December 6, 2000 - Hi, It has been awhile since I posted. I would like to join the chat room available but do not know what time it is for New Zealand. I have not been able to connect using the Pacific Time mentioned. Could you help me? I have tried working it out but am having problems.
I would also like to mention that I have had problems with my teeth and gums bleeding. When I visit the dentist I require intra-muscular antibiotics. I found one of my medications: felodipine, has a side effect of bleeding gums. When I changed to Losartan, the bleeding stopped. My e-mail address has changed since my last post. It is firstname.lastname@example.org
Robin Lynn, December 7, 2000 - Hey all, Boy, I made myself laugh at my last post and I bet a lot of you guys too. I sure hope no one went putting Mr. Bubbles in their tubs to get them clean. <g> I feel really stupid. I meant to say Scrubbing Bubbles. Sorry for the misprint but with the 2 girls, there are lots of bubbles in my house and I evedently can't keep them straight. Get that one? "Straight bubbles" <g>
Since my ablation a few weeks ago the sharper, quicker of my chest and back pains have mostly gone away. They were so frequent that I couldn't tell if the deep pain was really chest pain. There is no doubt about it now. Mine goes from the middle of me (my doctor loves that term) all the way through my back, between my shoulder blades. It is dead in the middle-upper back and will last from one hour to a few days. I also have left arm pain and numbness with it sometimes. My arteries are clear and wide open so I know it's not CAD. I do know from some medical studies that they are linking cardiomyopathy with microspasms. These are the small vessels that spasm, not the arteries. I believe this is the reason people with cardiomyopathy have chest pains. Just my thoughts. I don't like it when mine hurt. It is heavy and dull, almost like indigestion but just slightly different. I haven't tried nitro for it. I am never sure what my BP is and don't like the way it makes me feels.
Now I have developed hypertension! I have been having high readings since early September. I want to know if others with hypertension get sharp pains in their head and feel dizzy? Also, can development of high BP be a symptom of my LV getting larger? My doctor didn't really answer me and since I was an "emergency" BP check case he was in a hurry and I didn't get to hound him on it. Thanks for all your help.
Brandy, congrats on the great news! Just don't let them talk you into stopping your meds altogether. It is my understanding that once you've had this, you should be at least on a ACE inhibitor, probably for the rest of your life.
I have read some posts from people with pulmonary hypertension. Do any of you know what your PA readings are on your echos? I have particular concern on this because I have a hole in my arterial septum and my last echo shows a reading of 33mm of mercury. I read that resting should be 15mm. My BP is going up; could this also be a sign of PPH? Wouldn't you know that the hospital lost my cath report?! So I can't get the readings from it. Thanks to all for your help. Remember, Jesus is the reason for the season. Take a few moments out of each day during this busy season to remember that if it were not for Him, we would not be able to enjoy the beauty of this season. Merry Christmas. God bless, Robin Lynn. email@example.com
Terry T, December 7, 2000 - Hi, Several people have complained about chest and back pain that may or may not be angina. I had similar pains for years, even with clear arteries. I was told by several docs that it was simply the weakened heart not getting enough blood. My regular MD put me on Lanzoprazole for GERD (just for fun!). Bless her! I haven't had the problem since! I noticed when I went through the list on the site that quite a few people with CHF have GERD. Coincidence? Terry T, DCM for 7 years. firstname.lastname@example.org
Beverly C's December 7 reply to Carol M's December 1, 2000 - Hi, I had a year of what I believed to be painful angina due to a bad heart. October 27, I went to the hospital (for the 5th time this year) in the middle of the night with the usual chest pain. After 2 days in ICU and 2 more days of testing, I was diagnosed with a chronically infected gallbladder full of gallstones. It was grown to my liver and duodenum and was not even placed correctly. Since they removed it 5 weeks ago, my life has changed. Instead of being sick, weak, and in pain frequently, I feel like a new person! I can do anything I want. My husband thinks he has his old wife back! If you have the slightest idea you could have a bad gallbladder, get it out. It was like removing a cancer that was killing me daily. All it takes is a simple ultra sound test (noninvasive) to diagnois it. Best to all, Beverly C. email@example.com
Gus R's December 7 reply to Brenda George's December 6, 2000 - Hi Brenda, I wouldn't bet the farm on it but I think Chat number 1 which is on Wednesday December 6 in the US will be Thursday December 7 at 1:00 PM for you in New Zealand. Chat number 2 which is on Saturday December 9 in the US will be 2:00 PM Sunday December 10 for you. Best wishes to all, Gus R. firstname.lastname@example.org
Judy S' December 7 reply to Carol M's December 6, 2000 - Hi Carol, Jon is correct. The doctor is full of it. I have been seeing an electrophysiologist for 2½ years. He has been kind, helpful and understanding. Beware of blanket generalizations. Keep on keeping on. Best always, Judy S. email@example.com
Chris' December 7 reply to Rachel S' December 4, 2000 - Hi Rachel, I'm going to try to find your book. I was astonished at the grim, negative prognosis I was given back in August as well. The statistics look bad and make it appear that death is imminent. I didn't buy into it but it doesn't help. Marc Silver wouldn't tell people they were going to die as a first line of discussion about their illness. I don't think they (docs) really have a mirror-like image of themselves and realize how they are perceived; how powerful a negative as well as a positive message can be. I would also like to learn more about this implanted cardioconverter you mentioned, as I just went through cardioconversion yesterday and it didn't work. I walked away with second degree burns on my back and chest. Has anyone else here experienced any other effective ways to convert your heart back from atrial fibrillation to normal sinus rhythm? Thanks, Chris.
PS. Last Friday they told me my heart was less enlarged and looked better, even though telling me in August that I needed a heart transplant and had not long to live. Wolfman87@theglobe.com
Jon's note: I assume you have read my Implants pages
Jim's December 7 reply to Brenda George's December 6, 2000 - Hi Brenda, Try www.worldtimeserver.com/ for times anywhere in the world. firstname.lastname@example.org
Shane S, December 7, 2000 - Hi, I just ran across this web site last night. I am 25 and have had cardiomyopathy and CHF since September 13, 1999. I have already been finding things here that I was never given by any doctors. For one, the 5-year expectancy. I would like it if someone could give me a little more details on this. My EF was about 10% when first diagnosed. My last test in June indicated it was up to 35%. I feel worse now than I did 2 months after diagnosis. I went back to work for about 6 months but had to quit working in June. I've started my Disability process in June, and have already been turned down twice. I am on my way to a hearing soon. I have been getting the feeling they are turning me down because of my age.
I am married and have 2 wonderful kids: a boy age 4 and a girl age 2. I used to make pretty good money at my job but now we are barely getting by; living on love and prayers and faith in Jesus Christ. I just wonder who else is in the same boat with me. I have felt very alienated for the last 15 months over this whole ordeal. I would like to know more about this 5 year and 10 year rule just because I've never heard anything about it before. Also, I would like to know if anyone has the same diagnosis as me and got on Disability, and if so what was your trick? Thank you! email@example.com
Jon's December 7 reply to Shane S' December 7, 2000 - Hi Shane, There are some not too up to date statistics on CHF in general (1998 vintage) on my second Heartbytes page. I'm not sure if I even have the 5-year life expectancy stat on my site. If I do, I don't know where. Sorry but I have over 300 pages and even I lose track of what's where at times. That statistic is from data recorded from 1988 to 1994, I think. Anyway, I do know it's out of date so don't sweat it. My Disability page is here. Jon.
Gail C, December 7, 2000 - Hello to everyone at Jon's Place. My hubby and I moved to Knoxville, Tennessee 2 weeks ago and I am in need of a good cardiologist. I would like to know if anyone can give me the heads up on local hospitals. We are actually in west Knoxville in a area called Cedar Bluff. This sure is a wonderful change from Orlando, Florida, the land of hot, sticky heat! I love the colder weather and am looking forward to the change of seasons. God has blessed us so much. I hope you are all well and getting ready to enjoy the holiday season. God bless us all. Hugs, Gail. Gailie2253@aol.com
Maurice K, December 7, 2000 - Hi, I am a 66 white male with type 2 diabetes, sleep apnea, CHF, an EF of 35%, high cholesterol, and had a silent MI about 10 years ago. I was told about the 5-year life span but I say Bull! What a way to get encouragement to get off your bum and start doing the right things - lose weight, etc. I say pray and go with your feelings. My best to all. firstname.lastname@example.org
Joshua, December 7, 2000 - Hi Gang, I'm having a problem with bronchial congestion. My sinuses drain quite a lot, and I finally learned to spit out the drainage, which has helped the bronchials some. Still, after about 5 - 6 hours of sleep (sometimes a lot less than that) my bronchials start gurgling and wheezing, waking me up. Strangely, they clear up with exercise. I don't understand this, and would appreciate any input. I missed the chat last night because my computer was defragging. God bless. email@example.com
Wayne, December 7, 2000 - Hi, My doctor has asked if I would be interested in taking part in a double blind study of omapatrilat. The study will evaluate the safety and effectiveness of the investigational new drug omapatrilat compared to enalapril. Have any others been in this study and what has been your experience with the study? firstname.lastname@example.org
Jon's note: I'll e-mail you some articles from my mailings
Shane S, December 8, 2000 - Hi everyone, I was just wanting to stop in and invite anybody with any good info to e-mail me. I want to thank you very much Jon, for starting this web site. I don't feel like sitting for very long periods of time on my PC, so I'm just trying to read bits and pieces of your site at a time. I'll eventually get it all read. I'm a little worried about my next nuclear EF test. My doc said that if my EF went down again I might be put on the heart transplant list. That kind of scares me, but I know the Lord's looking out for me. I look forward to talking to many of you over time. I've been feeling pretty bad lately so if you e-mail me and I don't get back with you for awhile that's why.
Also, I've been having problems breathing when I bend over to tie my shoes. It almost hurts like I've had the wind knocked out of me. I have also been having pain in my feet since my doc upped my Lasix. Does anybody else have these problems? email@example.com
Autumn's December 8 reply to Robin Lynn's December 7, 2000 - Hi Robin, I have mild Pulmonary Hypertension at 33mm. Since my CHF cleared up I don't notice many symptoms; sometimes breathing problems if I get over-tired when dozing off to sleep, but my doctor says that is from central sleep apnea. Also, my fatigue seldom goes away. My doctor says that is something I will have to live with even though I am not currently in CHF. My blood pressure was slightly elevated for many years and has not increased since I developed PH. I did have a lot of breathing problems and in fact I couldn't even laugh without it taking the wind out of me, but as my CHF cleared up so have many of my breathing problems. I have become more sensitive to smoke, chemical fumes, dust, etc. I also have asthma so I find it difficult to separate one problem from the other. I don't have much information for you but hope I've helped some.
I am especially exhausted today because I dragged a love seat down from upstairs, and really over-exerted myself. My heart has been really reactive and I've been feeling yucky ever since. I really should have known better but I thought since I no longer have CHF and I'm sick of not being able to get things done, I'd do it. I'm getting further and further behind and things need repairing. Now I feel poorly and am beating myself up for being so stupid. I worry I may have caused damage. I really hope I've learned that I can't do things like I used to do.
I also talked to my doctor yesterday and he encouraged me to do whatever I wanted to do but that I do have to live within my limitations; like listen to my body, get enough rest, eat a low sodium diet, etc. He said I could do weight lifting with dumbbells but only 5 to 15 lbs. I think the love seat weighed more than that, even though it was a modern light-weight one. <g> Well, from now on I'm gonna be a good girl and not do such foolishness again.
I have been going through The Archives and find myself wanting to respond to some of them, but realize I only get to read 'em. <g> I sure learn a lot from everyone who posts here. AmberDawn-Blzn@webtv.net
Shane S, December 8, 2000 - Hi, Please help. I was wondering if you could tell me if a person can do some part-time work while waiting on Disability? I don't want to lose my chances of getting Disability and don't feel like working most times, but my wife cannot pay our bills. We are getting ready to lose a lot, including our car. I'm sorry, I'm not trying to sound like a sob story. If you could give me some info on this I would be so very grateful. I know this is something the government could care less about but it's something I have to care about. Thanks again, your friend Shane. firstname.lastname@example.org
Audrey S, December 8, 2000 - Hi, I just found this site last night. I've had MVP and have been on beta-blockers for 25 years for arrhythmias. For the last 6 - 7 years, it's turned into moderate mitral regurgitation. I also have PVCs (25,000 in 24 hours without meds) and runs of VT. So far, my EF is in the mid 40s and my heart is not enlarged, but my left atrium is, and everything is "thickened" or something like that. I take 300mg Lopressor, a calcium channel blocker, Avapro, and potassium. I'm pretty stable right now if I don't get sick or stressed.
My husband died 3 years ago from a pulmonary embolism 4 months after bypass surgery. I have 3 teens living at home. I'm not working thanks to SS benefits for the kids and me due to his death. I lurch between wanting to ignore this heart stuff and get on with my life, and paying a huge price physically when I do. I feel sort of lazy just raising kids and managing a house, but fatigue level from meds is pretty high. Most people don't begin to understand and I've given up trying to tell them. I look pretty good - flushed rosy red constantly from Norvasc, and if I monitor my activities I do pretty well. I just can't add anything to my plate unless I take something off, if you know what I mean.
By the way, I'm 48. All of my PVCs are "massively multi-focal" so nothing to do except treat with meds, I guess. Valve repair is an option, but there is no prognosis on what that'll do for my arrhythmias. Thanks for listening. email@example.com
Joshua's December 8 reply to Terry T's December 7, 2000 - Hi Terry, What does GERD stand for? firstname.lastname@example.org
Tracey C, December 8, 2000 - Hi Everyone, I'm wondering if anyone has tried the new Coricidin cold and flu medicine approved by the AHA. It is supposed to have no decongestants and doesn't raise blood pressure. I'm just curious if it works. Take care and have a great weekend, Tracey. email@example.com
Robin Lynn's December 10 reply to Autumn's December 8, 2000 - Hi, Thanks Autumn, for the info. I am wondering if your 33mm came from echo or cath? Mine is from echo. Good luck and health to everyone during this flu season. God bless, Robin Lynn. firstname.lastname@example.org
Robert Farish's December 10 reply to Mike J's November 28, 2000 - Hello to all, I haven't posted here in awhile, but I felt as though I needed to to give some hope to others here who are down with CHF and DCM, of which I also have both. In July of 1998 I was diagnosed with CHF and DCM with an EF of, I believe the very first test was 10%. My doctor told me that I would be looking for a heart transplant within 5 years. I immediately took all of my doctor's advice, took all of the medicines prescribed (see my my bio for my medicines, although my Coreg was increased somewhat) and have tried to get away from stress and heavy physical things such as lifting heavy items. I am also watching my diet, etc.
Well, I went to UNC Chapel Hill for my imaging and then met with my doctor on Wednesday and Thursday of this week. I'm happy to report that my right EF was 50% and my left was 46%. He also stated that since I was sustaining or just a little better than the 45% from last checkup I don't have a transplant in my forseeable future. He said that I could go on now possibly for 30 years or more, if I sustain as I have been doing so.
While I was in the waiting room, I spoke to one man who told me that when he was first diagnosed in 1996, that he had 6 months before needing a transplant. He was in bad shape in 1996. He couldn't even get out of bed! This is 2000 and he is doing very well. The medicines are working for him also so no transplant for him either thus far. He is another case, just as others I spoke to in that waiting room. The medicines are working and they are coming out with new medicines and treatments all of the time. The cell experiments being done now are exciting. This is where they take a piece of muscle off your hip, remove cells from the tissue and inject them into your heart tissue to rebuild the heart muscle. Hopefully that could be approved within a year or two. So to everyone, don't give up hope. I have been there also. If you aren't doing well and you haven't had a second opinion, get one! I did and it made a complete difference! I'm on a yearly checkup now. Merry Christmas and happy holidays to all. Good luck and best wishes. email@example.com
Gus R's December 10 reply to Shane S' November 8, 2000 - Hi Shane, I think the 5 year life expectancy might be true if one does nothing to help themselves; but with the help and guidance of some good dox, the right attitude, the right meds, and for many of us some big changes in lifestyle, we can often do much better than initially predicted. Some can't and I'm not suggesting that they didn't try to help themselves. I just don't think anyone should take the initial
predictions too seriously.
Disability is a whole 'nuther critter. I agree with 99% of what Jon has to say about the subject on his Disability page and he says it better than I can so I'll just mention a few points that I consider very important. Some people breeze right through the process but if you first applied in June 2000, I wouldn't expect you to be approved yet and would not expect it until about June of 2001.
If you haven't hired a lawyer yet, I would encourage you to do so. Selecting the right one is very important and you might want to speak with several before signing up with one. Any that won't take the time to explain the process and what can be expected from them are ones to avoid. Many people here consider this a waste of money but for me personally, I was being hit with so many unpleasant things in such a short period of time that I needed help at any cost.
On his disability page Jon says for you to get your dox to write and sign a letter including the phrase, "John Doe cannot work at any job for any reason and will not get better." I think this is the most important single item in the whole process. Use almost any means necessary to get this from one or more of your dox. I won't go quite so far as to suggest you fire any doc who won't do this but if they really care about you, they should be willing to do it and if not, they had sure better be super in some other respects.
My views on part-time work while waiting on Disability are generally disagreed with here and I'll admit that SSA seems to say it is okay but I say no. The reason for my no is simple. If "John Doe cannot work at any job for any reason and will not get better," how could John Doe work? I think some here have done some work during their application process and some continue to do some work after approval - all perfectly legal and proper under the SSA's guidelines and I strongly encourage them to share their experiences with you. I've been told I'm wrong so many times in the past that a few more won't bother me a bit and we all need all the help we can get.
With a working spouse you probably won't qualify for many of the various assistance programs but if you haven't checked them out yet, do so. Start with SSI. Then see what your state has to offer. They may call it public aid, welfare, or whatever, but check on it. Do the same with the county and city you live in and any organizations you belong to. Some will provide actual money but tax breaks, assistance with utility bills, medical bills, and so on, all help a little. You may find some of it unpleasant; I sometimes do but since I can't work at a real job I consider this work of a sort and just do it.
If you have to pay for your own meds, work on them. The guidelines on meds assistance vary greatly. Anyone can often get free samples from their dox and if there is a real need, the dox will sometimes be a big help. Ask each doc about all of your meds. Sometimes the heart doc has access to meds that are prescribed by your PCP and vice versa. Jon has some good meds assistance links. I personally like http://www.rxassist.org/. They have downloadable applications for many meds. All I have used must ultimately go through a dox office but I've found they are much more likely to add their part to an application that has everything possible filled out beforehand and has a stamped addressed envelope attached, than they are to do the entire process. Since most of this will be done by a sometimes overworked nurse, some sincere thanks and an occasional box of candy, cookies, or whatever, sure can't hurt. I'll admit that this was a very unusual week for me, but last Tuesday I received a totally free 90 day supply of both Paxil and Zocor from their respective manufacturers, which saved me about $500. Best wishes, Gus R. firstname.lastname@example.org
Anna's December 10 reply to Shane S' November 8, 2000 - Hi Shane, I noticed you've had questions about SSD. I've had a lot too and I've spent a lot of hours over the last few weeks looking for information. A good site I found is for chronic fatigue syndrome sufferers but the information could apply to any disability. There are so many links I haven't begun to check them out. The site is here. Once you're there, just go to the various subjects and click on disability. There is a lot on how to win claims. Good luck to you and all of us fighting that battle. email@example.com
Donna Z's December 10 reply to Tracey C's November 8, 2000 - Hi Tracey, I would be very careful taking any cold or flu medication without your doctor's permission. Even saline nose spray can cause problems with some people. Donna. firstname.lastname@example.org
Felix O, November 10, 2000 - Hi everyone, I need to get immunization against rubella and measles to enroll in college. Is there any risk associated with CHF and these vaccines? My condition has been stable for years now, thanks to diet, exercise, and medication. I am symptom-free. Any advice on this will be appreciated. email@example.com
Jon, November 11, 2000 - Hi everyone, I am deleting both my mailing lists today for technical reasons. Until I can find and get running properly some secure list-serv software, it's simply too much for me to handle, and I cannot properly control messages so they never go to people in my Contacts list but not on my mailing list. If I get a list serv running properly, I'll post the Url so you can sign up.
By the bye, if you use McAfee (Network Associates) anti-virus software, you may be in for a rough ride unless you have a very stout computer. The latest upgrade (version 5) eats resources like nothing I have ever seen and I am using a PIII with 128MB RAM. McAfee tech support has no fix - it's just bloatware. If you want a free alternative, try Inoculate It. I have this running on my wife's pooter now with no problems and it is pretty fast. I don't know how quickly they update virus files yet but will be posting a message if I run into any problems with this software.
To anyone who was expecting the usual Jon's Christmas makeover to this page complete with music and little animations, I apologize. I have upgraded the code on all my pages so much I'd have to rewrite the entire Christmas thing and just don't have the energy; maybe next year. ;-) Jon.
Robert Farish, November 11, 2000 - Hi, In my last post, I forgot to mention some things. My doctor told me that my heart size decreased from 190 to 130, and that normal was about 90. So my heart size has decreased as well. Again, if you feel as if you're not getting the very best treatment, please go and get a second opinion. You'll be very glad that you did. Bobby. firstname.lastname@example.org
Jon's December 11 reply to Robert Farish's November 11, 2000 - Hi everyone, I just want to note that when giving heart "size" it would be a huge help to include the unit of measure and which heart chamber is involved. I have almost enough info to complete my own page on heart size measurements but need one more run to the medical library and one more set of messages to Gino. According to the Mayo Clinic Clinical cardiology textbook (meant for practicing cardiologists, not med students) heart size for the left ventricle runs like this:
|Diastolic volume||125 +/- 15 mL|
|Systolic volume||40 +/- 15 mL|
|Diastole||4.5 +/- 0.5 cm|
|Systole||3.0 +/- 0.5 cm|
|Diastole||8 +/- 1 mm|
|Systole||14 +/- 2 mm|
|Diastole||8 +/- 2 mm|
|Systole||12 +/- 2 mm|
So you can see that this can be very confusing if not specific about heart chamber, whether it's at the "full" or "empty" end of the pumping cycle, etc,... According to Mayo (Gino uses this text for his CHF practice also), a heart "size" of 130 might be high-normal if it means left ventricle diastolic volume. I hope to have that page up soon but this has been the toughest information to get right I have ever seen since starting my site - literally. Doctors themselves diagree on "normal" heart size. It's no wonder we patients have such a tough time figuring it out! Jon.
Walter K's December 11 reply to Donna Z's November 10, 2000 - Hi Donna, What problems can saline nose spray cause? My internist just told me to use it because I was getting nosebleeds, presumably because of dry winter air. The spray has helped a lot in that respect. After reading your post that it can cause problems, I'd naturally like to know about them. email@example.com
Shane S, December 11, 2000 - Hi all, I just wanted to thank everyone, especially Anna and Gus, for your concern and for taking time to reply. firstname.lastname@example.org
Ruthie A, December 11, 2000 - Hi to all, I wanted to update you all on what is going on and how God is watching over us through this hard time. We are homeless and at the mercy of those who are gracious enough to allow us to sleep in their home. God has provided a roof over our head so far and we have a place to stay at least through New Year's so we are very thankful. Since we have no insurance, all my meds must be paid for at full price unless we can get them for free from the pharmecutical companies. There has been a delay on one of them - actually the company denied us twice, but my doctor has written them a special appeal letter - and we cannot afford to refill the prescription. I have not had the problems this medication fixes, even though it has been a couple of weeks without it. One wonders then if I need the medication at all, but my doc says it is part of the mix and we need to not fix what isn't broken.
In the meantime God has taken care of me, and I feel better than I have in a long time, probably because I don't have the side effects of that med anymore. I consider all this my special Christmas gift this year and I am very thankful to have it. May you all be blessed with health and strength this Christmas and throughout the New Year, Ruthie A. email@example.com
Thelma, December 12, 2000 - Hi, I have a quick question for all those with insomnia. Finally I went to see a CHF specialist. Of course, he upped my Lasix and Captopril doses. Now I'm having insomnia at night. Does anyone else feel this is related to diuretics or ACE inhibitors? I certainly never had a problem with this before, and it's not related to difficulty breathing or inability to lie flat. I'm just curious. I do have some Sonata which will relieve the problem, but I hate taking more medications. Thelma. Tcull@prodigy.net
Jon's December 12 reply to Thelma's December 12, 2000 - Hi Thelma, I have been from 40mg Lasix up to 160mg daily and back down to 40mg with no change in insomnia, although I think my insomnia is actually worse at 40mg daily. I don't know about ACE inhibitors but for me anyway, diuretics don't have any effect on my insomnia.
Phyllis W, December 12, 2000 - Hi, I have just had a prescription for spironolactone and am also taking Lasix. I would like to know if anyone else is taking both of these and if so, do you have any problems? firstname.lastname@example.org
Ed, December 12, 2000 - Hi, My CHF specialist has recommended for me to consider getting an ICD implanted due to my erratic arrhythmia. The benefits are obvious to me. I am trying to get more information about what are some of the problems: side effects, issues, recovery and maintaining a normal life with an ICD. Any responses would be appreciated. Thanks. email@example.com
Anna, December 12, 2000 - Hi, Has anyone used a disability representative such as Allsup as opposed to a lawyer for help in getting SSD? If so, how did you feel about the experience? I keep reading how good they are, but it seems like an attorney would be more help. firstname.lastname@example.org
Vickie K, December 13, 2000 - Hi, Having recently being diagnosed with HCM, and knowing that it is generally an inherited condition, I am concerned about my children ages 7, 9, and 11. They are all very involved in sports, including baseball and basketball. My pediatrician does not believe screening is warranted for them until they are teenagers. Does this seem reasonable to anyone in a similar situation? I am concerned about SCD and feel that if they are predisposed to this disease, then an echo would make us all know of where we stand and allow us to rest easier without restricting their activity if results were negative. Thanks to all. email@example.com
Taavi K's December 13 reply to Phyllis W's December 12, 2000 - Hi, I am taking both and have had no problems with them. I take the spironolactone in the morning and Lasix in the evening. I don't know if that makes a difference. firstname.lastname@example.org
Dave K's December 13 reply to Anna's December 12, 2000 - Hi there, I would strongly suggest you use an attorney for your SSD claim. If you break your leg, you would see an orthopedic surgeon, not a nurse. Sometimes we try to hard to save a few bucks and it may be more expensive. That's just my opinion though, good ole Dave. email@example.com
Donna Z's December 13 reply to Phyllis W's December 12, 2000 - Hi, I was put on Aldactone this past April at the same time I was taken off Lasix unless I really needed it. If I did need the Lasix too much I was to contact my CHF specialist and let her know but I have not needed any Lasix. The only problem I have had since taking Aldactone is that my blood sugars have gone up and I had to be put on insulin. I was also told to have my blood checked every 3 months for potassium. I feel much better on the Aldactone and have less episodes of irregular heatbeats. Donna. firstname.lastname@example.org
Anita's December 13 reply to Ed's December 12, 2000 - Hi Ed, I had an ICD for 9 years, implanted originally in 1991. It was scary at first, but just knowing the device was there and would save my life should any dangerous arrhythmias occur gave me peace of mind. I would like to recommend to you a wonderful web site dedicated to ICD recipients and their families. It's called The Zapper Newsletter. Best of luck to you. email@example.com
Doug K, December 13, 2000 - Hi all, It has been awhile since I posted. I have a question to anyone out there. Has anyone been buying Myovive from the web site? I have tried to buy on 2 occasions, and even sent an e-mail to them telling them that my order apparently isn't getting through but didn't even get an answer from that. I am just wondering if it is a problem on my end, or theirs. Thanks. firstname.lastname@example.org
Jon's December 13 reply to Doug K's December 13, 2000 - Hi Doug, I just became aware of a problem with ordering MyoVive last night and am getting in touch with them to see what the deal is. I'll let you know as soon as I find out what is going on. Jon.
Karen K's December 13 reply to Phyllis W's December 12, 2000 - Hi Phyllis, This most likely won't be the only response you get to your post. I take both spironolactone and Lasix too. For 9 years I took only Lasix then was hospitalized for the first time since my original diagnosis in 1991. The doctor added spironalactone to my mix of pills after that incident. From what I understand, they are both diuretics but work differently, actually together in a way that is better than only one of them. Lasix takes approximately 2 hours to "kick in" and lasts for about 6 hours (hence the term "La-six"). Spironalactone is slower to start its job and for me at least, appears to kick in later in the day.
I've read that spironalactone is recommended for those of us with cardiomyopathy and lessens hospital visits. I now only take 20mg of Lasix versus the 40mg I took prior to adding the spironalactone but I'm sure this is an individualized thing and should be worked out with your doctor. Karen K. email@example.com
Milt, December 14, 2000 - Hi to All and merry Christmas, I very seldom post but I read this site every day. I was diagnosed with IDCM and CHF in November, 1997. I take Coreg, Cozaar, Demedex, Altace, Lipitor, vitamins and CoQ10. In January of 2000 I was diagnosed with diabetes, so glucatrol XL and glucophage were added to the list. Now for my question: On December 6, 2000, my internist ran blood tests. My chlorestoral was 119 with HDL = 30 and LDL = 60. With the norm being 75 - 125, what is the damage? I was not taken off Lipitor but it was reduced from 20mg per day to 10mg per day. What harm will come with too low a cholesterol level? Spaz_1@msn.com
Doug K's December 14 reply to Jon's December 13, 2000 - Hi Jon, Thanks for your reply. I am glad that I am not the only one having the problem with the web site ordering. Such a good product, and I am feeling the need for some increased energy. Sorry I haven't posted much lately. I have had so much testing going on this year for the autoimmune problems, (which is still in the air as to being Lupus or not) that I just needed a break from constantly thinking about medical problems. I am doing pretty well but am noticing some energy drop off. Thanks again for your reply. firstname.lastname@example.org
Jan S, December 14, 2000 - Hi, I'm looking for information on how to research obtaining supplemental insurance for part B Medicare. I will be switching to Medicare in April from COBRA. I take, as most of us do, many medications. Thanks in advance for everyone's input to my research, Jan. Geschuppja@aol.com
Jeanette, December 14, 2000 - Hi, I am just posting to let all you know I am doing fine and am leaving for a 3 week Christmas vacation with my foster parents in Afton, New York. I won't have access to a pooter so I would like to wish Jon and his family and my family here a very merry Christmas and a happy new year. May God bless you all with good health and happiness. May He watch over you all during His season and protect you. I hope to talk with all of you after the 8th of January. Take care and may the researchers come up with a cure for our disease that made us a family here at Jon's. Jeanette. email@example.com
Jon, December 14, 2000 - Hi everyone, Here is a message I just received about MyoVive from the Director of Nutricia, its manufacturer (please note that once officially a "medical food" there is a good chance health insurers may start paying for it!":
"We introduced MyoVive as a dietary supplement early in 2000. Recently, we got the results in from a placebo controlled study at the Toronto University. This study showed that the deficient nutrients in heart cells of heart failure patients, such as l-carnitine, coenzymeQ10 and taurine, do get replenished by MyoVive. In addition, the MyoVive group showed an improvement in diastolic function.
Based on these results we plan to re-label MyoVive as a Medical Food for heart failure. Instead of just another supplement, MyoVive will thus be a very specific Medical Food. MyoVive is therefore currently being re-labeled and we will change the formulation as well the same time, increasing the magnesium level. We plan to re-launch MyoVive in Spring of 2001. The new formulation will have the same beneficial effects and will be suitable for a larger patient population with cardiac insufficiencies.
Unfortunately, there will be a lapse in supply due to time needed for reformulation, devising a new flavor, increasing the shelf life and the regulatory issues associated with this. We deeply apologize for any inconvenience this may cause. The current stock expires on the 31st of December, 2000. This stock is now being sold at shipping costs only. Perhaps you can still get it at SHS North America at 1-800-MYO-VIVE.
This mean there is a gap in the supply of MyoVive between now and Spring of 2001. Unfortunately, there's currently nothing I can do about it, other than try to get supply quicker than Spring.
All the best, Stephan"
Bill D's December 15 reply to Jon's December 14, 2000 - Hi Jon, I have never heard of a medical food. Unless your doctor prescribes it, will your insurance pay for it? University of Toronto? How many patients were in on the test? Bill D. firstname.lastname@example.org
Doug K's December 15 reply to Jon's December 14, 2000 - Hi Jon, Thanks for the update on what is going on with MyoVive. I will have to tough it out without it for awhile. It's good to think that it may become covered by insurances though. email@example.com
Beverly C, December 15, 2000 - Hi, I am also having an anemic problem with no apparent reason. Does anyone have any insight as to why? Thanks for help, Beverly C. firstname.lastname@example.org
Donna Z's December 15 reply to Walter K's December 11, 2000 - Hi Walter, I spoke with the nurse practitioner at our regular cardiologist's office yesterday and asked about the saline spray. She said not to use it because she just had someone come into the office back in heart failure because of using the spray. Once again the saline gets into your system, but check with your CHF specialist. Donna. email@example.com
Jon's December 15 reply to Bill D's December 15, 2000 - Hi Bill, Medical foods are overseen by the FDA Office of Special Nutritionals and the Center for Food Safety and Applied Nutrition (CFSAN). Such products must be produced in an FDA-approved facility, like the one Nutricia operates. These facilities are subject to ongoing FDA inspection. You can read about medical foods per the FDA here.
Will your health insurance cover medical foods? I don't know. This will depend partly on results shown by trials proving value in decreasing CHF symptoms - and thus CHF costs - and on insurance companies' individual reimbursement policies. However, the odds of being reimbursed go up substantially once MyoVive is approved as a true medical food.
The study Stephan mentioned and others are explained on the official MyoVive pages. Hope it helps, Jon.
Jon's December 15 reply to Donna Z's December 15, 2000 - Hi Donna, This is addressed by Marc Silver here (let it load). Generally speaking, saline nasal spray is not a problem for CHFers. For a few individuals, it may cause some sodium retention, but it's not common. Jon.
Richard B's December 15 reply to Phyllis' December 12, 2000 - Hi Phyllis, Aldactone and Lasix - I've been on both for over a year and the only side effect is that I'm going to need a bra pretty soon! My doctor says that that's one of the side effects but seems only men complain! Really happened, Richard. firstname.lastname@example.org
Jon's December 15 reply to Richard B's December 15, 2000 - Hi Richard, Aldactone can also cause "breast" pain in men. That's why I discontinued it. This happened to 10% of men in the RALES trial. Long-term digoxin use can cause the same problems in men. Jon.
Jon, December 13, 2000 - Hi everyone, Just an addition to other posts about spironolactone (Aldactone). If given at the low dose of 25mg, spironolactone does not have a noticeable diuretic effect but is given at that dose to reduce mortality and hospitalizations per the RALES trial.
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.