Ruthie A 12-16 many thanks, good to be back & more
Jon 12-16 just a note
Al H 12-16 a story you should read
Lori P 12-16 is this cause for a "new heart" birthday?
Joe S' 12-16 reply to Ruthie A's 12-16 prayers
Joe S 12-17 need help regarding potassium
Jon's 12-17 reply to Joe S' 12-17 potassium
Luc D 12-17 best wishes, having bad days
Ben B's 12-17 reply to Joe S' 12-17 serum potassium level
Rick M's 12-18 reply to Ben B's 12-17 potassium levels & more
Roger G 12-18 staggering meds
Deb 12-18 has anyone heard from Robin?
Jeanette W 12-18 happy holiday wishes
Thelma C 12-18 need to vent a bit
Jon's 12-18 reply to Thelma C's 12-18 coping & more
Lori P 12-18 questions about post-surgery anemia
Ted's 12-18 reply to Joe S' 12-17 potassium supplementation
Jean C's 12-18 reply to Thelma C's 12-18 coping, friends & more
Jay Q 12-19 warning to AOL users
Jon 12-19 WWW security
Thelma C's 12-19 reply to Jon's 12-18 illness, confusion, decisions & more
Jon's 12-19 reply to Thelma C's 12-19 decisions
Phyllis A 12-19 holiday wishes
Pat DeLeon's 12-19 reply to Joe S' 12-17 potassium problems
Donna's 12-19 reply to Deb's 12-18 Robin post-transplant
Candy P's 12-19 reply to Lori P's 12-18 post-surgery anemia
Jay Q's 12-20 reply to Jon's 12-19 browser security
Jon's 12-20 reply to Jay Q's 12-20 browser security
Pat L's 12-20 reply to Lori P's 12-18 anemia & more
Frank M Smith 12-20 PBS show about artificial hearts
Tom S 12-20 don't forget the good stuff
Brenda 12-20 what is cardiomegaly?
Jon's 12-20 reply to Brenda's 12-20 cardiomegaly
Gary V 12-21 seek CHF info
Jon's 12-21 reply to Gary V's 12-21 have you read The Manual?
Lydia Moore 12-21 holiday wishes
Pat L's 12-21 reply to Tom S' 12-20 where is our focus?
Jon 12-22 just gabbing
Sharon J W 12-22 holiday wishes
Linda 12-22 heart sounds question
Jon's 12-22 reply to Linda's 12-22 heart sounds
Donna 12-22 holiday wishes, Robin, update & more
Jean's 12-22 reply to Gary's 12-20 patience can pay off & more
Sara 12-22 holiday wishes
Barbara 12-23 down this holiday season - prayer request
Maggie S 12-23 holiday wishes
Jana B 12-23 God's not sleeping
Donna Z's 12-23 reply to Deb's 12-18 I heard from Robin
Margie F 12-23 update, holiday wishes
Doug K 12-23 update, holiday wishes
Harriet 12-23 holiday wishes & more
John 12-25 Christmas wishes
Renee M 12-25 update, holiday wishes
Ledeva 12-25 holiday wishes
Susie O 12-25 holiday wishes
Luc D 12-25 holiday wishes
Pat Y 12-26 holiday wishes
Don J 12-26 intro & more
Linda O's 12-26 reply to John's 12-25 enjoyed your message & more
Carolyn H 12-27 dobutamine therapy for CHFers
Jon's 12-27 reply to Carolyn H's 12-27 dobutamine therapy
Rick M's 12-27 reply to Don J's 12-26 ahhh, we do seem young, don't we? <g>
Phyllis A 12-27 cardiomegaly question
Jon's 12-27 reply to Phyllis A's 12-27 cardiomegaly
Phyllis A's 12-27 reply to Sharon's 12-22 season for miracles & more
Gus R's 12-27 reply to Don J's 12-26 youth, age & CHF
Jon 12-27 Christmas
Dan 12-27 question - winter's onset brings bad days
Candy P 12-27 holiday wishes - got my SSD & more
Tom S' 12-27 reply to Dan's 12-27 those bad days
Joy R's 12-27 reply to Jon's 12-27 dobutamine therapy experience
Karen K's 12-27 reply to Dan's 12-27 seasonal depression, update & more
Joyce 12-28 intro, please reply
Joe S' 12-28 reply to Karen K's 12-27 seasonal depression & more
Gail A 12-28 intro, update & more
Audrey 12-28 seek valve repair experiences & more
Pam 12-29 intro, supplements, please write
Jon's 12-29 reply to Pam's 12-29 supplements & more
Christine 12-29 update, supplements & more
Phyllis A 12-30 update, holiday wishes, prayer power
Barbara F 12-30 can angina be related to CoQ10? & more
LeeAnn D 12-30 update, holiday wishes
David M 12-30 intro, impotence & ginko questions
Missy 12-31 wallet cards, update & holiday wishes
Ledeva 12-31 Y2K pooter change for Windows
Jana B 12-31 prayer request
David M 12-31 ginko question, impotence questions
Jon's 12-31 reply to David M's 12-31 supplements, impotence
Donna 12-31 holiday wishes
Donna's 12-31 reply to Missy's 12-31 wallet cards are a good idea
Joy R's 12-31 reply to Missy's 12-31 wallet card experiences
Ruthie A, December 16, 1999 - Merry Christmas to all, Thanks to all of you who have prayed for me during this ordeal with my back. God has been so faithful in getting us through this and I truly believe your prayers had a great influence (as if we could influence God <g>). Anyway, there are so many of you that have written with notes of prayers and encouragement that I could not possibly answer them all without collapsing. Please accept my thanks from here.
I am slowly recovering, but doing well. It is harder to deal with the weakness of surgery than the "super-fatigue" of CHF. I am not sure why, except that I understand CHF more than I do the spine and surgeries and all. This whole experience has reinforced the need to learn as much as I can about what is happening to me, if for no other reason than that I can then care for myself better without fear. I am also learning to not be afraid to ask questions. It is my body and I have the right to understand what is happening to it. It's kind of scary to be so aggressive, but it's also very important. If you don't take care of yourself, no one else will! Well, enough. Glad to be back and in one piece. Ruthie A. email@example.com
Jon, December 16, 1999 - Howdy-doo everyone, I just want to pop up briefly here and say that I am sorry for not participating much lately. I am making my daughter's Christmas gifts and spend most of each day doing so, with my remaining time spent with wife, my puppies, or doing the dreaded but necessary exercise routine! I am updating The Beat Goes On once a day and am still collecting info to mail out first chance I get. I'll be back to twice a day updates and I'll be as intrusive and obnoxious as ever once I get Linz' gifts done in a few days ;-)
To all who have asked, yes, my wife and or daughter sing some of the Christmas songs above, namely Oops, Ideo, Come All Ye Faithful, and Pie Jesu. I couldn't get them both to sit down at the same time long enough to add any new ones this year!
Al H, December 16, 1999 - Hi, I am a long time member of this forum, however I seldom post. Sometimes I do communicate with others through e-mail if a post stirs me. Over the past several years, Jon's Place has been very helpful to many people. Some have gotten irritated and left but overall, many of the same individuals who were here several months after Jon started this place are still around. Some of died as a result of their illness but modern medicine has kept most of us alive.
The link I am including with this post is a newpaper article about a 13 year old boy that died recently. He lost his battle with heart disease. For a long time I have been an advocate for organ donation. After this story I am even more an advocate of donation. Please take time to read this story and pass it on to others. Al H. firstname.lastname@example.org
Lori P, December 16, 1999 - Happy Holidays, everyone. I haven't posted in awhile but I do read the posts every evening. This site continues to help me get through all my woes. I do have a question though, and I hope it doesn't sound too silly. When a person receives a heart transplant, they tend to celebrate their "new birthday." Is this the case in other major heart surgeries, such as bypass or new valves? My family always refers to my heart as "Lori's new heart" even though the only new part is my mitral valve. To us it feels like a new heart because of the success of the surgery after my own valve ruptured. I was just curious as to what others thought of this. I know it's not a pressing, important issue, but I was wondering. Thank you. Take care, everone. email@example.com
Joe S' December 16 reply to Ruthie A's December 16, 1999 - Hi Ruthie, Of course our prayers can influence God. It is a great misconception of too many churches that all God does is sit up in heaven and watch. He gave man free will and allows us to blunder on, but He also interferes constantly when we ask Him to. Don't let anyone or any "theologian" tell you otherwise. Joe S. firstname.lastname@example.org
Jon's Note: Ruthie's part of the choir <g>
Joe S, December 17, 1999 - Hi, I have a problem here. Help. My prescription for Potassium Cl ran out and when I went to refill it, the doctor in my old town said I have to get a new doctor up here. I called the recommended doctor and he said he won't see me until the old Doctor calls him. It's now been 2 weeks and my old doc still hasn't called the new one. I completely ran out of the potassium yesterday and still haven't been able to get them to communicate. How serious is it to go without potassium? Is there anything I can substitute in the meantime? Joe S. email@example.com
Jon's December 17 reply to Joe S' December 17, 1999 - Hi Joe, I see you take 20mg Lasix twice a day. You need that potassium supplement. See Nutrient Stew for info on its importance. My suggestion would be to go to an ER doc if your insurance allows, explain your situation to him and then immediately go see a doctor other than the one recommended to you. Potassium is not a drug subject to abuse so no doctor in his right mind would make prescribing it over the phone conditional upon anything, especially given its well-known importance to heart patients.
About this doctor, he's bad news. Period. I would not even consider being treated by a doctor who wouldn't see me until my old doctor called him. What kind of behavior is that? I went doctor hunting recently, and not one of the doctors I contacted even hinted at such a requirement. In fact, my current doctor didn't care why I left my last doctor and proved it by never asking. He gave me a complete physical, took a complete history himself, and then sat down to discuss my concerns for half an hour. Then he started addressing those concerns with medical therapy. That's a doctor. I had to see a few to find a permanent replacement, but I am sure any one of them would have immediately written me a prescription for potassium chloride whether I decided to use them as my own doctor or not. Go to an ER and get some potassium, then go find a good doctor, Joe. That's my advice.
One problem with trying to eat bananas or something similar to replace potassium is that this crams a large amount of dietary potassium into your system all at once, and whatever is not absorbed leaves pretty much all at once too. This does not provide the steady, same-level supplementation you need with Lasix draining your electrolytes. Prescription potassium is slow release, steadily maintaining your potassium level. For instance, "K-Dur tablets contain microcrystalloids which disperse upon disintegration of the tablet. The microcrystalloids provide controlled release of potassium chloride." Jon.
Luc D, December 17, 1999 - Dear friends here at this wonderful heart forum, I want to wish you all the best with these special days, knowing most of us have very hard days with lots of pain and other heart problems, we still have each other. I'm having very bad days again lately, with chest pains caused by the hypertrophic cardiomyopathy that I have. I really hope we can find some better days next year! Let us pray for the people who are sick and depressed, Jon, thanks pal, for all the work and support you give to all of us here at this heart forum! All the best, Luc D and family from Belgium. firstname.lastname@example.org
Ben B's December 17 reply to Joe S' December 17, 1999 - Hi, Just a reminder that in addition to a prescription for potassium, we also need to have blood levels of potassium tested. I also take only 20mg of Lasix, which is a small amount, and 40mg of Zestril, which is a large amount of ACE inhibitor. These work opposite to each other as far as potassium is concerned, so at my last blood test my potassium level was high and the doctor took me off the supplement. email@example.com
Rick M's December 18 reply to Ben B's December 17, 1999 - Hi all and Merry Christmas, My low sodium program worked so well I had to cut back my Lasix to 20mg every other day. Blood tests showed that I no longer needed any additional potassium, so with my Acupril at 40mg twice a day, my levels are fine. If my weight goes below 203.5, I start to dry out too much and skip Lasix completely until I hit 205 or so. It works for me. firstname.lastname@example.org
Roger G, December 18, 1999 - Hi, I don't remember who posted about taking Coreg at breakfast and dinner, and Vasotec at lunch and bedtime, but ohhhh, that feels better! Thanks for the advice. Roger G. Rogergthree@prodigy.net
Deb, December 18, 1999 - Hi there, I haven't heard from Robin lately, who had her heart transplant back in July. I sent her an e-mail recently and didn't get a reply. Has anyone heard from her recently? email@example.com
Jeanette W, December 18, 1999 - Hi Jon, This is just a note saying thank you for being here this year. I wish you and your lovely family, and all who read your posts, a very merry Christmas and happy 2000! May the new millenium be a blessing to all, and may we all be excluded from pain and depression. I pray we all are healed by the Lord as well. Take care. Love, Jeanette W. firstname.lastname@example.org
Thelma C, December 18, 1999 - Hi everyone, Today was my last day of Rehab and I'm having a very hard time tonight with depression. I know you folks understand, so please bear with me while I vent. Being 43 year old and having gone through such a horrendous summer, being diagnosed with DCM and OSA, I guess I was hoping for rehab to be my big ticket to improvement. Yes I improved, but I set my expectations way too high.
My follow-up tests on the December 8 showed no change in my EF of 30. It may even be a bit lower, and my echo looks basically the same. I am pleased that my stress test showed my Vo2 max increased from 12 to 21. My biggest problem (or fear) is that my doctor has told me to get back to work and I'm afraid I won't be employable and that I may not be able to make it through a work day without that "hit the wall" feeling. He also wants me to have an EP study with a possible ICD implanted but my insurance will only cover 20-30% of this expensive procedure and I don't have any funds for the rest.
I'm feeling very isolated from friends who seem to have distanced themselves from a sick friend. I guess all these are valid feelings, considering how sick a person can be with DCM and all the adjustments we have to make. I'm not asking for sympathy but just need to vent. I sure appreciate this forum and all you great folks. Here's wishing all of you the happiest of holidays and a much healthier Y2K. Thelma. Tcull@prodigy.net
Jon's December 18 reply to Thelma C's December 18, 1999 - Howdy-doo Thelma, Some depression is certainly a natural reaction but here are some thoughts, for whatever they may be worth. Forget the numbers. I have come to believe through my own 5+ years of CHF that numbers have little relation to how I feel. How do you feel, Thelma? That's the strongest indicator of how you will do down the road - per my doc, anyway. Did rehab make you feel less fatigued? Did it help you feel more in control of your own life? Did it set you up for success by improving both your physical endurance and your mental clarity? Rehab is a stepping-stone, not an end to a means (improving numbers). It enables you to cope a little better with whatever is down the road. That it did not improve your numbers is unimportant. Trust me on this one - concentrate on how your body feels, not what the numbers say.
I think it's easier to set unrealistically high goals now than it was when I was diagnosed. Too many doctors are buying into the, "A cure is just around the corner" idea. They are convinced - because they have never had CHF themselves - that they can raise your physical quality of life back to where it was before you were diagnosed. The fact is that they probably cannot. So when I was diagnosed, I was told "Get a transplant or you're gonna die, but quick." Many CHFers diagnosed today hear the opposite extreme of "We can make you virtually well." The truth is somewhere in the middle, as usual. Remember that you are still alive, you are likely to stay that way, and the horrible death guaranteed by CHF a few decades ago may completely pass you by. Although you may grieve for your lost opportunities for a while, you can get on with life just like you got on with life before you got CHF. It wasn't easy then either, was it? <g>
Going back to work after a long absence, especially with reduced confidence, is scary. My wife stayed home with my daughter for many years and then re-entered the workforce and it was scary for her. She didn't know what skills she needed to compete now that she did not have, and so on. Yet she has since worked her way up to multiple department head. I was off work for almost a year due to a severe injury sustained working in a lumber mill. I was told by 5 - count 'em, 5 doctors - that I would never do my old job again. Believe me, it was scary going back since my boss gave me no options other than my exact old job. After 4 years of night school and 8000 hours of on the job training, I sure did not want to try and change careers now! I made it though. I did the same job and did it so well that my production records post-injury still stand. You may not be able to work full-time, but then again you may. If you can, go after it and don't worry until you have something definite to worry about. If not, there's only one way to find out and that's by giving it a try.
One of the keys for me was to continue the physical rehab exercises every day throughout my career. While doing that job, I never quit strengthening my body. Keep on exercising to whetever extent your body allows! Stay on the low sodium diet, take your meds faithfully, get plenty of sleep every single night, listen to your body. Don't stop doing the things that work for you now! You are at the beginning of a long road, not the end. I think the sun can shine on that road if you decide that it will. What's a little rain now and then, when the sun's just ducking behind a cloud, soon to reappear?
I'm sorry to have rambled on like this, but as my wife will tell anyone who asks, once I get started it's hard to shut me up! I know you weren't fishing for answers, just unloading, but my mouth has a mind of its own. By the way, what is OSA? I know it can mean online sexual addiction or obstructive sleep apnea. Are you a bit, shall we say raaaandy or do you have sleep apnea? ;-) Jon.
Lori P, December 18, 1999 - Hi, Is anyone familiar with post-surgery anemia? Is this a result of being on the heart-lung bypass machine? Any shared experiences would be greatly appreciated! email@example.com
Ted's December 18 reply to Joe S' December 17, 1999 - Hi Joe, There are other ways of getting your potassium. I am on potassium and lasix too, and ran out. The only reason they put me on potassium pills was that I would not eat fruit all the time. I would not want to go to a doctor that says he won't see you until your old doctor calls. firstname.lastname@example.org
Jean C's December 19 reply to Thelma C's December 18, 1999 - Hi, Everybody is here for you so vent away. This whole life change can be frustrating and depressing. I think most of us go through it. I also included getting mad as a wet hen. The Manual is a great help when you have questions, although instead of getting a dog, I ended up with 3 inside cats and heaven knows how many come by to eat outside.
I don't think your friends have abandoned you as much as they probably don't know how to help. We in this country don't like to admit that we don't know what to do. I have found that if I put a little bit of effort into asking after friends and family, they are there just like always. When the really bad times hit, just lie back and give the troubles to God. Literally reach out your hand and let Him take the load. Jon has a really good section on how to do that. Thank you Jon, for the wonderful site on the computer. I am very new at this but read it every day. I wish everybody a happy holiday season and continued success in the new year. email@example.com
Jay Q, December 19, 1999 - Hi Jon, A word of warning for your AOL users. An hour or so ago I was asked upon logging on to AOL (and before calling for e-mail) if either my credit card number or address had changed recently. Since both had, I followed instructions and gave the new ones. I was then asked for my password, which I foolishy gave. This raised my suspicions and on calling AOL, I found I had been scammed. Needless to say, I immediately cancelled my current credit card number and changed my password. Moral: they mean it when they say "AOL staff will never ask you for your password or credit card information." Cheers, Jay Q. firstname.lastname@example.org
Jon, December 19, 1999 - Howdy-doo everyone, I usually try to keep WWW security issues off the board because so many people pass on illegitimate warnings as if they were fact. This time, I'll follow Jay's warning with a brief piece about Web security in general, especially since people are passing on a lot of warnings - valid ones and hoaxes - to me for The Beat Goes On.
I run MS Outlook 98 for e-mail and use several browsers. I use a national ISP for my Internet connection. I avoid AOL and advise others to do so because they encourage members not to learn about the Net, but to rely on AOL and the WWW for everything, a policy I personally dislike. On AOL, you will likely never learn about gopher, telnet, and a host of other things available on the Net rather than the Web. However, if you don't mind invasive software (what isn't these days?), and you do not want to learn much to use the WWW, it may be right for you.
The more you learn, the safer you are. I run McAfee VirusScan for virus protection. I upgrade it whenever possible and purchased 2 years of upgrades with the software. Please note that upgrades are not the same as updates! Upgrades install a newer version of the software. Updates install protection against the latest viruses (virus definitions) and should always be free, while you must pay for upgrades. I check for updates every day and install new ones immediately. My "start page" is the new virus warning page for Network Associates. Get virus protection, learn what it does, and use it! I have nailed several viruses before they nailed me in the past few months, both from the Web and from e-mails.
The latest virsues are far more harmful and pro-active than past versions. They can and will delete and overwrite files on your system, and may lie in wait for up to a month before doing so. Some pick certain file types, like the virus that overwrites all the document files on your system with no content (zero bytes) and then resaves them without any way for you to know until you go to open one in Word and nothing's there. They may make a hidden Internet connection on your system and download files to your system you know nothing about. Again, the more you learn, the safer you are. I no longer open non-picture attachments without manually scanning them first, I do not accept document files with macros, and I never open *.EXE attachments these days so don't bother sending me any.
Cookies are supposed to be safe but I have found from my own personal experience that e-mails open in Outlook 98 can be read by a Web site visited at the same time via cookie use. I no longer accept any cookies. This will limit your surfing on some sites, so if you accept cookies, just be aware that they can scoop info from your system and pass it on to others. I tried a cookie-control type software but found it ineffective against such cookie misuse, despite its claim to prevent such issues.
Of course, as Jay says, never give out personal info to anyone over the Net unless you are alert to problems and still satisfied with security. We had a breach of our credit card number even though our only online purchase was made with a very reputable company over a secure connection using a 128-bit browser. All it takes is one employee in the office at the other end getting greedy or even just careless for your info to be compromised. I think online commerce will be fairly secure soon, but I do not think it is right now. The main reason is that people are not paranoid enough, even though major software companies are doing everything they possibly can to get us to accept software that makes connections for us, downloads and updates software for us and much more. We have no way to monitor what information is going out or coming in to our systems.
Luckily, if you severely limit active scripting in your browser, surfing is quite safe. HTML is a lousy medium for viruses of any kind. It was designed that way. It's only now that everyone wants ease of use more than security or efficiency that other scripting languages are being commonly used online that are very susceptible to carrying viruses.
Don't be put off by all this dire talk, though. I surf the Web every day, download lots of stuff, use more software than most people, and have fun throughout. I do think online activity is generally quite safe, as long as you pay attention to what is going on, and follow those basic security rules. Do you? Jon.
Thelma C's December 19 reply to Jon's December 18, 1999 - Dear Jon, You are a gem with quite the sense of humor! Thanks for the smile. You indeed echo the words of my doctor in regards to work, "You don't know unless you try." I will try and focus on the "feeling better" vs all the numbers. It's true from what I've read that numbers have no correlation to how a person feels and can function. I sure wish I had a more positive cardiologist though. I have yet to hear "we can cure you." Instead it was, "Ooh this is bad", "You will need a transplant", "sudden death", "massive heart with little movement", then all of a sudden, "you can go back to work." I'm confused, and I'm an RN! I guess this is the reality of a chronic illness and I need to accept all of these crazy emotions. It's just that this is new to me. I truly am thankful that I am alive and know some of you are dealing with greater limitations from your CHF. Thanks for letting me unload a bit. Thelma. Tcull@prodigy.net
Jon's December 19 reply to Thelma C's December 19, 1999 - Hiya Thelma, I thought you could use a grin. <g> Since these are such important and possibly life style-altering decisions (going back to work and all), have you seriously - and I mean seriously - considered getting a second opinion from a doctor totally unaffiliated with your current cardiologist? I cannot recommend this too strongly. Really. Jon.
Phyllis A, December 19, 1999 - Hello to Jon and all my friends here. First, thank you Jon, for this site. I learned so much here, more than the docs ever told me. Next I would like to wish everyone a happy and healthy holiday. I pray we all do better health-wise in the year 2000. May Jesus Christ continue to watch over us all and our families. email@example.com
Pat DeLeon's December 19 reply to Joe S' December 17, 1999 - Hi Joe, We've corresponded via e-mail before. I've been wondering how you're doing. About your potassium: both too much and too little potassium can have disastrious results, although too much tends to become critical more quickly than too little. Both situations can cause, among other things, dangerous arrhythmias, so please find a doctor right away. I agree completely with Jon that the one you called is not competent to tell you such a thing. In the meantime however, I suggest that you go to a pharmacy and tell the pharmacist what the situation is, and ask him to recommend an OTC brand of potassium and quantity until you see the doctor. By the way, the pharmacist may be a great source for recommending a good doctor. Good luck and let us know the outcome. Pat DeLeon. firstname.lastname@example.org
Donna's December 19 reply to Deb's December 18, 1999 - Hi, I heard from Robin a few weeks ago. She was doing great. I was asking her where she had her transplant and who she used. I believe she told me a doctor in New Jersey but she knew my transplant doctor here in Pennsylvania and actually went to her but changed when the hospital my doctor was at went through a reorganization. My doctor then moved from the old hospital to the University of Pennsylvania. She really liked my doctor, which made me feel good. email@example.com
Candy P's December 19 reply to Lori P's December 18, 1999 - Hi Lori, I was slightly anemic after my aorta to bi-femur bypass. I attributed it to being in surgery for 5½ hours and having a blood tranfusion. My doctor told me to eat foods rich in iron. GrPota@aol.com
Jay Q's December 20 reply to Jon's December 19, 1999 - Hi Jon, Thanks for the words on "safe surfing." I have made a personal copy for ready reference. Unfortunately, my present computer is too slow for a 128-bit security setup. Although I have deep affection for the old machine, I guess I will have to reinvest this spring, including a first-rate security arrangement. Cheers, Jay Q. firstname.lastname@example.org
Jon's December 20 reply to Jay Q's December 20, 1999 - Hi Jay, If your current system will sustain a 40-bit browser, and first rate anti-virus software, you're ok. The only area you would be weak in is online purchasing using a credit card number. Honestly, the main weak link in online purchasing is in the office at the other end. Security once they already have your number is the real problem. A 40-bit browser should allow sufficiently high security settings for scripting. The prime means of infecting a pooter is through e-mail and its attachments, and browser security isn't important there, only common sense and that anti-virus software. Jon.
Pat L's December 20 reply to Lori P's December 18, 1999 - Hi Lori, I have had blood work showing I am anemic since December of 1995, about 8 months after diagnosis of my CHF and more significantly in my case, since I started on this load of meds I take. My primary care physician told me to take B12, Folic acid and iron. He referred me to a hematologist, did additional blood work and told me to stop the supplements since my iron level was too high, even though I was still anemic. He then made an educated guess that the problem was from at least one of the meds. He said my system has been destroying my mature red blood cells but continues to produce more them very rapidly. Since they are immature red blood cells, I am showing up as anemic. I have consistently had blood work showing I am anemic ever since but my iron level has always been normal to high! Pat. email@example.com
Frank M Smith, December 20, 1999 - Hi, Heart patients may be interested in a new Nova program on PBS. It is showing in central and southern California on Tuesday, 12/21/99, at 8:00 PM. The program is entitled "Electric Heart." A holy Christmas and positive New Year to everyone! Frank M Smith. firstname.lastname@example.org
Tom S, December 20, 1999 - Hi, I believe we all are missing a golden opportunity to share the positive things that have happened to us in the past year, and in some cases to rejoice in the fact that we have survived another year. We should also share the joy this season represents and extend to each and every man, woman and child touched by this forum a very happy and holy holiday season and a prosperous and healthful happy New Year. email@example.com
Brenda, December 20, 1999 - Hi, What does cardiomegaly mean and what do you do about it? firstname.lastname@example.org
Jon's December 20 reply to Brenda's December 20, 1999 - Hi Brenda, Cardiomegaly means an enlargement of the heart. The primary actions are 2: discover the underlying disease that causes the heart to enlarge and treat that; and to treat any symptoms caused by the heart being large and weak - namely, to relieve the heart failure that results. Jon.
Gary V, December 20, 1999 - Hi everyone, My name's Gary, from Tucson. I have a recent diagnosis of cardiomegaly and CHF with an LVEF of 10%, 15% on cath. I know very little about the disease process yet except the intake restrictions and that I feel bad most days. I am looking forward to some insight. Gvanho5813@aol.com
Jon's December 21 reply to Gary V's December 20, 1999 - Hi Gary, Have you read The Manual yet? Jon.
Lydia Moore, December 21, 1999 - Hello Jon, It's been awhile since I posted and I just want to take this moment to thank you once again for making this site available to all of us. Heart disease can be debilitating and frightening to say the least, but because of your efforts, you have made all of us feel like we are in better hands. I have definitely felt the physical wear and tear the holidays can bring but the joy is alive and well. It is amazing how God sustains us and gives us the strenngth to persevere. You have been of vital importance in our lives and I just want you to know how very special you are to all of us. I wish you and your family a blessed Christmas, and I wish to extend a very blessed Christmas to all on this forum. We have become a very close family with a very common bond. God bless to all, Lydia Moore. email@example.com
Pat L's December 21 reply to Tom S' December 20, 1999 - Hi Tom, Thanks for helping me get my priorities straight again. I have had a disappointing downward slide with my CHF since October and have been focusing on that instead of the good things that did happen this year. Since I read your post, I have been thinking about all the good things again. Pat L. firstname.lastname@example.org
Jon, December 22, 1999 - Hi all, I'm a bit late today but I want to share this anyway. Our modem conked out yesterday afternoon, for good. I couldn't use my old one because Prodigy no longer supports 14.4 modems in my area and I don't have drivers for it either. So I needed some cash which I didn't have, since we spent all our money to get our daughter a cool present. Weeell, my daughter walked in just about then and handed me an envelope which came in the mail. It was a check from my Union Local (a great bunch of guys) giving me $150 to help with Christmas purchases! God provides, so here I am, only one day late. Jon.
Sharon J W, December 22, 1999 - Dear Jon and all, I wish everyone love, peace and courage during this season of miracles. It's a good life! email@example.com
Linda, December 22, 1999 - Hi Jon, I know this may be an odd request. I've really enjoyed your Christmas music and this got me thinking. Is there any way you could add the sounds of a healthy heartbeat and one with DCM, especially one with a leaky mitral valve? My doctor said that my heart no longer has a "galloping" sound. I was curious what this was. Thanks and I'm keeping you and your family in my prayers. Linda. Contessa@prodigy.net
Jon's December 22 reply to Linda's December 22, 1999 - Hi Linda, You can find info on the third heart sound, called S3, in the text files here. The S3 is often called a "gallop" and is common in children but usually disappears in healthy adults. Many CHFers develop it, though, as well as a fourth heart sound. Some Web pages that may include the sounds themselves can be found here, and here. Jon.
Donna, December 22, 1999 - Hello Jon and all, I wanted to wish everyone on this list a very merry Christmas and a happy and healthy New Year. I am feeling a lot better since I was diagnosed in July, but I still find my energy zapped when I try and do too much, so I pace myself. The doctor thought I was class one but I feel more like class 2. I just did an interview for the local paper on living with CHF. I sure hope I got my point across that your whole life changes when this happens. People see me and tell me how great I look. I do look good but they don't feel the palpitations when I
overdo or see how frustrated I get when I can't clean a whole room because I have to sit and rest. My life style has changed dramatically, not just the food, but everything. This forum has been a blessing because there is no support group for me and my family can't possibly know what or how I feel and what my thoughts are concerning my health.
I see the transplant doctor on January 12. I'll have a lot more questions for her now that my head has stopped spinning from the shock of hearing I have CHF. Deb had asked about Robin. Well I heard from her and she is doing very well. It's a small world; Robin saw the same transplant doctor I saw, so that made me feel good even though a different doctor did her transplant. That was because my doctor was leaving one hospital because of reorganization. Robin liked her a lot and that made me feel good. Once again Jon, thank you so much for this forum. Happy holidays to all!
PS. I was approved for Disability at work but turned down by SSD; big surprise, but I will try again or take Jon's advice and get a lawyer. Donna. firstname.lastname@example.org
Jean's December 22 reply to Gary's December 20, 1999 - Hi, Your diagnosis sounds just like mine of last January 31. After many months of treatment with Lasix, potassium, Lanoxin, Coreg and Zestril, my heart has returned to normal size and my EF was 55% when I had an echocardiogram in October. Do not get discouraged. It does take time to recover. It took me 8 months to feel good again. Happy holidays and think positive. Thanks again for this site. email@example.com
Sara, December 22, 1999 - Hi Jon, I was going to try to express my feelings to you regarding your time, love, energy,and devotion on your forum but it seems Lydia Moore said it all on 12/21. May God bless you and your family, and all God's children. May God grant us better health in the new year. Happy holidays to all. Sara. firstname.lastname@example.org
Barbara, December 23, 1999 - Hi, I am having a rough time this holiday season, with so much to do and not enough energy to do it. I started having more angina in the last 3 weeks, so my doctor put me on a nitro patch. It does seem to be helping but if I exert too much, it comes on anyway. That is what happened today and the feeling of impending doom came with it, so the black cloud has been hanging over my head ever since. This CHF robs you of your indentity, It is so hard to get back to who I was. I guess I never shall but would sure like to not be so afraid and so depressed. The good Lord has helped me so much and I must put myself into his hands and let him do the helping. Sometimes I forget and think I can do it. I would appreciate being put on a prayer list as I feel I really need it at this time. I pray that it is a merry Christmas for all of "The Beat Goes On." BFletch@ivic.net
Maggie S, December 23, 1999 - Hi Jon, I just want to add my thanks and appreciation to you for this site, and the time, effort and energy you put into it. You have provided a real service to us all. I hope that you and your family have a very merry Christmas,and I pray that we all have a happy and healthier new year. Maggie S. email@example.com
Jana B, December 23, 1999 - Hi Jon, That story you told about your Union guys coming though with much needed money was an act of God I have seen happen many times in many people's lives. I'm glad you mentioned it here on the board! God works through many people in many ways. Your mention of what you experienced reaffirms a person's belief in how God will work in our lives. Sometimes us sick folks (and some not so sick folks) need reminding that God is always here for us, always waiting and ready to hear our prayers and meet our needs. Thanks for sharing that miracle. Jana B. JByers4u@aol.com
Donna Z's December 23 reply to Deb's December 18, 1999 - Hi Deb, You where asking about Robin. I got a post from her today. She is doing very well and cannot get over how great she feels. It's a small world - she and I used to see the same transplant doctor in Philadelphia. She had her transplant in New Brunswick, NJ. Isn't it wonderful what modern medicine can do these days? I hope we all have as much luck as Robin. Life is good for her again and I hope it will be as good for us one day. Have a happy holiday! Donna Z. firstname.lastname@example.org
Margie F, December 23, 1999 - Hi, I want to send special Christmas wishes to Jon and all those who participate at Jon's Place. I've been mostly in the hospital since Thanksgiving. I just returned from John Hopkins Saturday for a transplant evaluation. My Christmas present will be to be put on the heart transplant list. I should only have about a week before I get officially notified. I'm so thankful to be able to spend Christmas with my family and friends. Bless you all, Margie F. MFisher238@aol.com
Doug K, December 23, 1999 - Hi Jon and all, I just wanted to take a minute to thank Jon for another year of keeping the site going, and for continuing to do it so well. I haven't been posting so much as I used to. I am awaiting the results of more medical tests (non-CHF). As soon as I get the results, I will send you a new bio. I have been having problems swallowing and my neurologist thinks I may have myasthenia gravis. I won't know till after mid-January, though. So to you Jon, and your family, a very happy holiday and thanks again! To all the rest of you CHFers and Bill D, happy holidays to you as well. email@example.com
Harriet, December 23, 1999 - Hi Jon, About your modem, my heart started singing when I read about your getting the funds to replace your modem. God does take care of us doesn't He? I hope your family has a blessed Christmas. Mine is quite different this year but I will get through it and Jesus will be my partner through it all. May God bless us every one. Love, Harriet. HPrince57@aol.com
John, December 25, 1999 - Hi, I thought I would share something I wrote for my family for Christmas. Having CHF has its value. Your life and your work, don't ever confuse the two. John Lennon made the point this way, "Life is what happens while you are busy making plans."
What separates one person from another? Many people have the same or better education than you. Thousands of people want the same job you do. Many are of like intellect and personality as you. What makes you you? You are the only person in this world that has sole custody of your life; Not just your life at work or your life in the car or your life at the computer. You have control of the life of your mind, the life of your heart, the life of your soul. No one else has that power. Your successes and your failures are up to you. How hard you choose to work or not work toward your goals is up to you and you alone.
My wish for you, my family, is success. The reason I wish you success is solely from my own personal experience. In my lifetime I have experienced both success and failure. Although I have always learned much more from my failures, I must admit successes are by far superior from the perspective of emotion and self esteem, but whether you are successful or not, the development of your soul is the most important thing. People don't talk much about the soul anymore. It's much easier to write a resumé than to craft one's spirit but a resumé is cold comfort on a winter's night or when you're sad, when you're broke and lonely or worse when you've gotten back medical test results and they are not so good.
Here is what I hope my resumé says about me: I am a good father to 7 wonderful kids, a grandfather to 2 so far. I have never let my profession or my love stand in the way of being a good parent to you. I have always tried to say yes to each of you unless the answer had to be no. I have always listened to each of you and tried to see your point of view. I do not consider myself the center of the universe. I am there when you need me or want me. I listen and I try to laugh. I love my wife and I hope I am a good friend and companion to her. I try every day to make my wedding vows mean what I said. I try to listen and to laugh. My goal in life is to make her more money than she can spend, but also to have the kind of personal relationship with her that makes that goal a joy and not a chore to attempt. I hope I am a good friend to my friends, and they to me. Without them, there would be nothing to say to you today. Friends are the family you get to chose, not the ones you are born with. They are the trusted advisors you consult to be a better parent, husband, business person or human being. I meet them for lunch, I show up, I listen and I try to laugh.
I hope I am a good business person; Someone who is successful at getting things done; One who is thought of as fair, compassionate, and smart. I would be rotten in business or at least mediocre, if everything else I have already said is not true. For you cannot be truly first rate in your work, if your work is all that you do. So here is what I want to tell you today: get a life, not a manic pursuit of the next promotion, the bigger paycheck, the larger house. Would any of those things matter if you have a heart attack, find a lump in you breast or find you have cancer? Pretend every day that you have a terminal illness, for we all do, and treat every day as if it might be your last. Remember the only day which is guaranteed is today. Tomorrow may not happen for you. It is so easy to waste our lives, our days, our hours, our minutes. You wake up one day and you're 40 or 50 years old and look back at all the wasted time.
Learn to love your journey, and not the destination. This is not a dress rehearsal, it is the performance so give it your all. I only recently learned to live. One of my failures taught me that. While I wish I had not gone through that failure, since I did go through it I wish I had done it at an earlier age so I hadn't wasted so much time in ignorance. I did learn some of life's hard and important lessons from it. Learn to look at all the good in the world and try to give some of it back, for giving costs the giver very little and is so valuable to the person who receives the gifts. I am giving to you here the valuable information which I have learned in over 48 years on this earth. It costs me nothing to give it to you, yet I know if you receive it, it can be invaluable to you.
Make a life in which you are not alone. Find people you love and who love you. Love is not a leisure activity, it is hard work. It takes effort to love, to show your love and sometimes even to receive love. Generosity is the key to love and money. When you spread or share your wealth and time with others, love and wealth flows to you. People will want to see you successful. There is a sense of camaraderie between generous, kind and loving people. Complete strangers with this sense will supply you with your needs, they will recognize you as one of themselves if you are a kind and generous person. It will be rare indeed if you receive back from those that you give to, so don't expect this. Your rewards will come from people you do not know, nor do they know you but they will recognize instintively that you are one of them, one of the generous and kind, and they will treat you accordingly.
So go out in the world, my young brood. Take with you this advice and knowledge. Use what you will of it for your benefit. This information has served me very well in my lifetime and perhaps part or all of it will be useful to you. This is my Christmas wish for you, my family, my friends. I love you all. firstname.lastname@example.org
Renee M, December 25, 1999 - Hi all, It has been a long time since I posted and I have missed all of you. I had a very bad fatigue spell, a sinus infection, took a fall and injured my hip (thank goodness it wasn't broken!) and my Dad was in the hospital twice. No wonder I'm tired! I just wanted to wish everyone a happy holiday season. I hope everyone has a wonderful new year. After the last couple of months, I'm just thankful to spend the holiday with my family and that we're all still here. No matter how bad things get, we're still here and able to get to the computer. We should be thankful that we can be here to support each other when we need it. As we say in our family, we just take one day at a time or sometimes we only take half a day because a whole day is too much to think about. Best wishes to all in the coming year. Renee M. email@example.com (new e-mail address)
Leveda, December 25, 1999 - Hi, Merry Christmas to everyone. May God bless us one and all. AChitw4617@aol.com
Susie O, December 25, 1999 - Hi, To Jon and his family, and also to the "family" of Jon's Place. May the new year bring better health and happiness to each of you. I wish the best for you. See http://www.geocities.com/Paris/Arc/6338/9160.html. firstname.lastname@example.org
Luc D, December 25, 1999 - Dear friends, I want to wish you all a merry Christmas! Give your loved ones a real big hug from me. Your Belgian friend, Luc. email@example.com
Pat Y, December 26, 1999 - Hi Jon, Your site has provided me invaluable information. I just want to say thank you for the wonderful, consistent, informative job that you do. I wish you and your family a wonderful holiday season. Pat Y. PTYoumans@aol.com
Don J, December 26, 1999 - Hi, My daughter recently steered me to this site and I find it very interesting and informative. Thanksgiving week I was admitted into the VA hospital at Minneapolis, Minnesota. I was diagnosed with congestive heart failure and I have been going through the typical procedures. The doctors made no bones about it that I would have to get rid of fluid, which I am doing - 20+ pounds since November. My hospital discharge indicated no restrictions on exercise. My wife and I do a lot of walking. We live in a 3 story townhouse so we have stairs to climb. My one great problem is that I cannot take a nap and sometimes night sleep is hard to come by. For awhile I had to sit up in a chair but slowly I am finding I can lay down in a bed. I keep hoping that as I lose fluid, the problem will get less and less. This has happened so far, so I have hopes. In looking over the list of people you have published, I see that there is no one as old as I am. I am a 75 year old veteran of WW2 and a former prisoner of war. I have signed up for a research project at the VA hospital on the basis of the fact that I will see a cardiologist more often than if I just waited for an appointment. I have already learned from your site but I hope to learn more. firstname.lastname@example.org
Linda O's December 26 reply to John's December 25, 1999 - Hi John, What a way with words you have. I feel the way you write and I wish I could express it so well. Thanks to Jon for the site. I miss Bill and Jack and Ginger and their comments and helpful hints. I wish you all a happy and healthy 2000. Linda O. email@example.com
Carolyn H, December 27, 1999 - Hi, To all CHF'ers, Please ask your doctor about being put on IV dobutamine therapy. The dosage must be low (I get 5 micrograms which is about 6 teaspoons) and the infusion rate is slow. It takes 4 hours to receive the infusion. It took 5 months for me to feel better but it has been worth it. I travel to a hospital 28 miles away and I go 3 times each week. Yes, it is tiring but if it helps, it's worth it. I live in the southwestern part of Pennsylvania and the cardiologists here have been using this therapy for at least 2 years. I feel fortunate to live in an area where there are progressive cardiologists. There are at least 15 patients in the Ambulatory Care Section that are on the dobutomine therapy, so you see the therapy is being used by many doctors. firstname.lastname@example.org
Jon's December 27 reply to Carolyn H's December 27, 1999 - Hi all, It's been a long time since I played devil's advocate but here I go again. <g> IV dobutamine therapy is not for all CHFers, not even for very many of us. Any CHF specialist would agree. I do recommend this type therapy to end-stage CHFers - class 4 with little chance of recovery - but it has drawbacks.
This type therapy is called inotropic, meaning that you are using an inotrope - a drug that increases the strength with which your heart beats. This includes dobutamine, milrinone, amrinone and the still-in-trials Natrecor. Dopamine can also be used. This type therapy was very much in fashion 5-10 years ago, until it was discovered that CHFers treated this way had much higher mortality than those on "standard" therapy.
Inotropic treatment is coming back into use but only in patients with severe CHF who do not respond to oral drug therapy, and even some of those patients cannot tolerate it. These drugs may cause cardiac arrhythmias in at least 12% of patients. These arrhythmias can kill you, since they are often ventricular rhythm disturbances. Inotropes may also be vasodilators that can cause extreme low blood pressure as well as headaches. I won't go into other drawbacks, since they vary from drug to drug but you can find info on them right here at my site as well as at sites reached through the Links page. Be sure to use the drug search sites listed in my Links. I do!
So while this is an excellent therapy for some who are class 4 with little hope of further recovery, there are many things to consider before taking it, if you are not class 4 already. It greatly eases the days of those with severe CHF but it also may shorten those days. "Progressive" means "moving forward." It is interesting to note that cardiologists have moved forward past recommending this treatment for all CHFers, as they once did. Maybe, once all the dangers and benefits are firmly established by carefully conducted trials, these will once again be often-used CHF drugs but they are currently very much in question and honestly, I doubt it. Better drugs are already in the pipeline, including Natrecor for short-term use.
Like all good CHF clinics, my own clinic provides outpatient IV inotrope therapy to CHFers. However, they choose patients for this therapy with care and monitor them even more carefully. Inotropes are useful tools in a CHF specialist's arsenal, but they are not for all CHFers. Read up on it before asking your doctor about it, please. To start, try www.heartinfo.org, www.chfpatients.com/inotropes.htm, www.chfpatients.com/heartbytes.htm#managechf, and look it up places like www.cponline.gsm.com. Please note: Inotropes can be very dangerous for people with hypertrophic cardiomyopathy. As always, education is everything for us CHFers. Jon.
Rick M's December 27 reply to Don J's December 26, 1999 - Welcome Don, to Jon's Place. Don't be fooled by our youthful appearances here. I am also 75 years old and a veteran of WWII, as well as a 3 year veteran of Jon's Place. I think there are others here as old or older. We all have a youthful spring in our typing fingers, so it's kind of hard to tell. With regard to your water retention, most of us have experienced it but have greatly modified our diets so that it is no longer a problem. I recently was able to cut my Lasix use in half and occasionally have to watch that I don't get dehydrated, just from the force of habit. I have to force myself to eat a normal resturant meal. <G> email@example.com
Phyllis A, December 27, 1999 - Hi Jon, I have a question about enlarged hearts. I have HCM, which is Hypertrophic Cardiomyopathy. What is the difference between it and cardiomegaly? I hope everyone had a nice Christmas. firstname.lastname@example.org
Jon's December 27 reply to Phyllis A's December 27, 1999 - Hiya Phyllis, You know how cardiomyopathy is sort of a catch-all term, that means heart disease of any kind? Then you have the types and causes of cardiomyopathy, like dilated, ishemic, viral, alcoholic, hypertrophic, restrictive, and so on. Well, I think cardiomegaly is the same sort of term as cardiomyopathy. It just means an enlarged heart, without assigning any type or reason to it. So a doctor may look at a chest x-ray, see an enlarged heart and say, "This gal has cardiomyopathy and cardiomegaly." Well, he really hasn't said anything specific at all, just that something is wrong with that gal's heart because it is to large to be healthy. ;-) Jon.
Phyllis A's December 27 reply to Sharon's December 22, 1999 - Dear Sharon, This is indeed the season for miracles. My Dad coded 3 times back in October and the docs told us to go in and say goodbye. I just now left him at the hospital. He is in rehab and doing great, praise the Lord. I told the docs that my family believes in a higher power and His name is Dr. Jesus, so again I agree this is the season for miracles. email@example.com
Gus R's December 27 reply to Don J's December 26, 1999 - Hi Don, Welcome to Jon's Place. I think you can reasonably expect more improvement as you lose fluid; most of us do, but there are no guarantees. I was going to disagree with your statement that no one here is as old as you, but a real quick search found only Rick M at 74 when his bio went up. If you don't like us young whippersnappers, just hang on, you're not alone. Milo, who is an older gentleman, used to post here a lot and might again, and I still think there are more your age or older. It sounds like your attitude is good, and you have found some good dox, which are 2 of the toughest hurdles we face. Unless there are other problems, I don't think age is that big a factor with CHF unless you get stuck with some dox who think it is and are therefore less aggressive in treating your CHF. By the way, I'm 56, going on 96. :-) Best wishes, Gus R. firstname.lastname@example.org
Jon, December 27, 1999 - Well, Christmas has come and gone once again. I wonder if anyone remembered what it meant. A son was born, to a scared teenage girl in a strange town far from home. Nine months pregnant, she had to ride a donkey - over stone mountain roads - to strange places, with no one for company but a husband she barely knew, and no money in her pocket. God is wise, for only a teenager could have coped with the realization that she carried the Son of God in her womb. It would have overwhelmed a mature woman. Mary did not know what she really faced but she knew that God was with her - a wise woman at the ripe old age of 15. Christmas day - in the most common of all God's miracles, a son was born of woman into this world.
Mary loved Jesus her son, and had to watch him die. Joseph had to try and raise a son wiser than he could ever be. Jesus' brothers, sisters and cousins would always be associated with a man considered insane by some and holy by others. At the end, Jesus would die alone. Strange isn't it, that the one man who truly considered all men his brothers would be deserted by all those men at the time of his greatest need? He died alone, forsaken even by God, weighed down with my sin.
Men can try to be good. Men can try to do good. They can seem good to one another. But look inside and we are all dirty. I know it and you know it. We think evil thoughts, we do evil things. We take pride in deeds we did not do, things we did not say, thoughts we did not think. Just so long as others think we did, we glory in them anyway. We want to do what it is right but in fact, we do what is wrong more often than not. Jesus died alone so I could be clean, clean from my own filth, my own dishonor, from the misdeeds all can see and from those I hide from the world.
I remember the son born that day. He is my life. My faith in Him is my badge of honor. To those who don't like it when I talk about him on the Internet, tough. Deal with it. Jesus is the only truly good thing to ever happen to me and to you. The difference is that I know it. I am a Jesus freak because a son was born that day, to die for me. There is nothing I would rather be. Jon.
Dan, December 27, 1999 - Hi, I have a question for anyone. I live in Indiana. Every winter as it grows colder, I seem to feel terrible for a short period of time at the beginning. Does anyone have any insight why? Thank you for any help on this matter. email@example.com
Candy P, December 27, 1999 - Hi, I hope everyone here had a good Christmas and will have a happy new year. I finally got my Social Security Disability. Now I'm waiting to hear about SSI. Hopefully that won't take too long. However, now I lose my long term disability from work, which is considerably more than SSD and SSI put together. Oh well, such is life. GrPota@aol.com
Tom S' December 27 reply to Dan's December 27, 1999 - Hi Dan, This could be the onset of "cabin fever" or the fact you are consigned to residing in Indiana. <g> Who knows? Perhaps medical science can work on the causative agents responsible for your problem. firstname.lastname@example.org
Joy's December 27 reply to Jon's December 27, 1999 - Hi, I have now been on dobutamine for 2 years and 2 months. I infuse 12 hours a day, 5 days a week. At the time I went on the IV, I was in pretty sorry shape but now am doing much better. It took me a long time to have a little quality of life but with adequate rest and conserving my energy I am making it. About the dobutamine, at one point I was in sort of a labored breathing all the time and this has gotten increasingly better until now I only have problems if I move too fast or lie down. I have always realized the risks of being on this drug but it has given me 2 years of better life quality. I see the cardiologist in Feburary and want to try at that time to start to decrease the amount of hours I infuse to see if it is the dobutamine that is keeping me pumping or if I'm really better.
The down side is that I am very dependent on this drug. I infuse hyperalimentation at night for 12 hours and I infuse the dobutamine in the day. Both pumps are identical and on Christmas Eve, I mixed up the pumps and put in dobutamine at 130 an hour and ended up in the hospital and misssed Christmas altogether but I was lucky. That was a huge overdose as I put in 200cc in less than 2 hours. So I can thank God that I am here, even though I am still having some problems since doing this. Everyone stay as well as you can and be thankful for what we have. Joy. email@example.com
Karen K's December 27 reply to Dan's December 27, 1999 - Hi Dan and All, First to respond to Dan's question: I also feel worse in the winter, much more tired and just plain unmotivated but I've found that for me, it is due to our yucky Iowa weather. I'm a true California girl at heart and no matter what, I always will be. I take antidepressants year 'round and still found myself getting into a funk in the winter. I have found that exercise does help to an extent and since it's also good for my heart, I try to remain faithful to the trusty treadmill at least 5 days a week.
I started working this past fall as part-time secretary at our church. Today I really did a number that could have been much worse. I walked out to the mailbox and slipped on some ice covered by that lovely white stuff and fell flat on my back. As I went down I could feel my right leg twisting and I was waiting to hear a snap. I was fortunate indeed, since our church sits off a highway and had I knocked my head hard enough I could have lain there for quite some time, since there isn't always much traffic in the parking lot during the week. Also, I had stupidly walked out without a coat; just a turtleneck and heavy sweater.
I guess I should close. I just wanted to check in again and let you know I still do exist. I just ordered a new 'puter. It has all the bells and whistles, and I am very excited about it. Karen K. firstname.lastname@example.org
Joyce, December 28, 1999 - Hello, I just found this site and read The Manual. I am so glad that it's not just me. I felt so alone and really thought that I was going crazy. My husband (will explain later) told me to look up CHF on the new computer he bought me. He works in the nursing field and tries to help. Your information brought a new light into my life. I'm only 45 and never thought anything was wrong with me till last year when one night I could not breathe. My husband took me to the hospital in time and they told me I had a heart attack. After several tests, the doctor felt I needed a 5-way bypass. I never had that feel-great feeling after. That's when I found out about CHF. The doctor really never explained anything to me, so I really felt alone.
I've been bounced around the Florida system because I collect SSD and Medicaid. It's sad because I could not get used to this. I always had the best insurance and best doctors. Oh well, anyway, I found this site and now feel like I'm not alone. Now I have this mission to get as much information as I can. If I rattled on, forgive me as I'm excited to find this. Someone please answer and tell me I'm not alone. Thanks, Joyce. email@example.com
Joe S' December 28 reply to Karen K's December 27, 1999 - Hi Karen, I am also a native Californian and found that the foggy condition of the California coast was really beginning to bother me breathing-wise. I moved to the eastern Sierras, near Lake Tahoe and haven't felt this good for years. Last week I went back to Santa Maria and immediately began to feel bad again. 100% humidity does it every time. Regarding feeling depressed in the winter, there are fluorescent lights called full-spectrums which help a lot. They give you the color of high noon on a clear day. They have 5200-5400 Kelvin with a CRI of 90 or above. Most good hardware stores sell them. Make sure they are rated that way though. Joe S. firstname.lastname@example.org
Gail A, December 28, 1999 - Hi Jon, and sincere wishes to all for a very happy and healthier new year. While I check in almost daily to find how others are doing, I haven't posted in a long time. However, I wanted to share something I haven't seen mentioned to date and hopefully help others avoid the pain. My specialist changed the beta-blocker I have been taking for years from 100mg metoprolol twice daily to 100mg Trandate Labetalol twice daily to agressively treat and lower my continous high blood pressure. However, as it turned out, this trandate drug - while aiding one's heart - causes a negative reaction to the receptors in one's lungs.
I had been taking it for a week and was getting progressively more breathless and in great pain with every motion. I was unable to walk even 60 feet in my house without collapsing breathlessly. Being a stubborn soul, I put off calling the cardiologist until I was desperate. I was told to go immediately to the hospital emergency room, where I was quickly treated for heart failure. I was labouring so hard to breath that my heart had become extremely tired with the overload, so I was forced to stay very quiet and calm with no activity even to go to the washroom. So my stubborness ended up causing me to use bedpans intead for several days.
It was my family doctor (you need a good one) who stopped the Trandate medication because he recognised the adverse effects on my lungs. I spend a total of 8 days in the hospital trying to get back on track. Even now with mild exertion, I still have pain in my left lung. One doctor diagnosed it as pleurisy along with my asthma that flared up pretty fast with the wrong drug. On the eighth day I was able to pass the treadmill test with a slow shuffle and my heart was stable again. I have gone from a class 3 to class 2 over the years with proper medication and treatment but this can be quickly thrown away. You need total involvement in your own health regime. I really thank you Jon, from the bottom of my heart, because the information you provide in your site has made me more aware of the whole CHF condition and this knowledge has provided me the ability to ask more intelligent questions to my care providers. I would be lost in a fog without this information and support and I believe the doctors appreciate it also, when you provide them with a clearer and more precise description of you condition.
At our hospital you get whoever is on duty at the time of admitting, so you need your drug list written down and it's imperative to give a defining description of your condition because if you're in great distress, you forget or leave out valuable info the doctors need for your treatment. Don't be nervous to ask questions about new drugs and what they will do for you, and also about side effects. I wish everyone a very happy new year in body and soul. Sincere regards, J. Gail. email@example.com
Audrey, December 28, 1999 - Hi Jon, I certainly hope you and your family had a blessed Christmas. I went to the doctor 12/17/99, and he suggested I consider surgery for a regurgitating tricuspid valve, plus repair of holes in my left and right atrium. We think the holes occured after valvuloplasty 1½ years ago. I am retaining fluid and keep going into heart failure. The doctor increased my zaroxolyn to 2.5mg every other day, plus 280mg furosemide taken daily. He is keeping close tabs on my potassium, which is low right now, and he has increased my Midamor to 5mg daily, plus an additional potassium tablet for a total of ten 20mEq K-Dur daily.
I would greatly appreciate it if someone out there in cyperspace who has had tricuspid valve repair would contact me about the surgery and results. My doctors are arranging for me to see a surgeon, and they have encouraged my getting another opinion, but I would really like to find someone who has had this surgery. Also, am allergic to IV potassium. I found this out when previously hospitalized for low potassium. Thank you and happy new year. Yours in Christ, Audrey. ANoll61628@aol.com
Pam, December 29, 1999 - Hi, I have been reading this site for awhile and have used some of the information, especially the different vitamins available. I started using CoQ10 for almost a year now, plus other supplements such as taurine and selenium. I can truly say I feel so much better. I did check with my doctor first and he said go ahead; it couldn't hurt. I will keep reading this site - it's great! I agree, the Lord is the greatest medicine when all is said and done. I would love to hear from others. firstname.lastname@example.org
Jon's December 29 reply to Pam's December 29, 1999 - Hi Pam, I am currently trying a new vitamin/nutrient/mineral supplement in liquid form. If I can get a 90-day supply, I'll let you know how it goes. I've taken it for 3 weeks so far. This one looks real good to me. The company making this supplement used this site to track what CHFers wanted in a supplement and so your input helped formulate it. Good comes from sharing info even when you don't know about it. ;-) Also, my e-mail is acting up today so if a message isn't replied to, please give it an extra day. Thx, Jon.
Christine, December 29, 1999 - Aloha to all you folks, It has been awhile since I posted. I have been trying new things for my CHF and diabetes. I was quite depressed since I had to take nitro just to walk around the block, especially when I walked uphill, my breathing and gasping was pretty bad. Well, I decided one day to check out the library for something more on my condition. I was actually praying in one of the aisles when something told me to go to the new book section. I walked over and found a book called the "Arginine Solution." That is an amino acid. The book said it worked wonders and was written by an MD. I grabbed it and within a couple of days read it from cover to cover. I called the store that supplied this amino acid; it is called L-arginine. I ordered it right away and started at 650mg a day, then slowly increased it. Now I am up to one gram a day or more with no side effects, except good ones.
Now I can breathe easier and can also walk without difficulty. I have not taken nitroglycrine in 4 months now. I traveled to Las Vegas with my daughter where the temperature was 27 to 45° during our stay there from December 12-17. I walked on the Strip from one end to the other without problems. I highly recommend getting the book and reading it, but would request you folks to discuss things with your doctor before taking it. I did talk to my doctor, who was very supportive. I told her I wanted quality in my life, not quantity.
The other thing I am working on right now is controlling my diabetes. I am seeing a nutritionist who has recommended certain enzymes and cleansers which have lowered my blood sugar readings and my insulin. I have lost 10lbs and don't even feel hungry. The most amazing thing is that I eat fruit all morning, something I could not touch before. I am due to visit my internist soon next year and hope my blood work is clean, with good numbers. Well folks, I just thought I would keep in touch with you after a long period of silence. Believe me, you have to not underestimate the power of prayer. It works if you believe that God listens to you. That is called faith. Aloha and many good wishes to you all for the coming years, not only the new year. Take care and God bless. Chrisd1950@aol.com
Phyllis A, December 30, 1999 - Hello Jon and Friends, I just wanted to let you know again that you cannot beat the power of prayer. My dad is coming home Friday, New Year's Eve, after 3 months in hospital and docs telling us he would not make it through the night back in October. This will truly be a happy new year for my family, so I'm wishing you and yours a very happy new year and a very healthy one. God bless, praises to my Lord and Saviour. email@example.com
Barbara F, December 30, 1999 - Hi Jon and heart forum, I posted last week about angina and feeling down. Well, I was reading the 12/29 post from Pam about CoQ10. It suddenly dawned on me that I started taking CoQ10 about the same time my angina began coming on so strong. Is it coincidence or could it be,..., ? I guess the best thing is to stop it and see what happens, right? When I ask the doctor about taking it daily, he also told me that it certainly would not hurt me. Taking CoQ10 is the only thing I am doing differently, except stress from Christmas and perhaps overdoing. I truly feel very well if the angina didn't pop up in afternoons, along with the black cloud that seems to arrive with it. Any ideas, anyone? I want to wish all of you nice people, "Happy New Year and may 2000 be a good year for us all." God bless. Barbara F. BFletch@ivic.net
LeeAnn D, December 30, 1999 - Hi everyone, I've been lurking lately but tonight I thought I'd wish everyone happy holidays. I loved your thoughts on the birth of Jesus, Jon. Thanks for that. I've been doing really well; watching my sodium and feeling pretty darn good. I hope it lasts awhile - a long, long while! My 3 little angels are getting big. When I first found this site almost 2 years ago, my baby was really a baby, and now he's 2½! It is wonderful to hear both my 6 and 4 year olds tell people, even strangers, about the miracle that happened to their mommy. They have such a pure faith in God and in prayer, it's astounding. I hope everyone here has a healthy and happy new year. LeeAnn in Phoenix, age 39, DCM - EF from 8 to 40! firstname.lastname@example.org
David M, December 30, 1999 - Hi, This is my first go at this. I am in the UK and have DCM. I take Tricace, digoxin, amiodarone and a beta-blocker. I am partly impotent and would appreciate any feedback on the subject. I was wondering about Gingko but cannot find out anything about possible dangers. My BP is 110 over 70. I hope to hear from someone, David. email@example.com
Missy, December 31, 1999 - Hello everyone, I hope you all had a nice Christmas. I haven't checked in for awhile because of a busy week. Jon, great letter. With all the hustle and bustle of the holidays, I think everyone forgets what Christmas is all about. I applaud you for reminding us that God gave us His only Son to forgive our sins. I'm doing much better having found out about CoQ10 on this site. I'm up to 100mg a day and it seems to be working. I see my doctor in April so we will find out then if my EF is up. I'm also a volunteer EMT and a great helper for EMTs and paramedics. If you can make up a card on your computer or a friend's and put on it your name, diagnosis (all of them) and drugs with doses and times taken, it really helps. Have several made up to keep on your person or close at hand to give us. It saves a lot of paper work and time, and also if you are not able to respond, it can tell us some idea of what might be wrong. If you have a printer with your computer, they are very simple to make up and might save your life. I hope this little hint helps. Have a very happy, safe, and healthy new year. God bless, Missy. firstname.lastname@example.org
Ledeva, December 31, 1999 - Hi everyone, I thought this might be worth passing along: For those of you running Windows, there is a simple change you should make before Y2K. I hope you all have a great new year! AChitw4617@aol.com (Jon's Note: I have no idea if this is necessary, but as far as I can tell, it causes no harm
Jana B, December 31, 1999 - Hi, My New Year's resolution is to stop smoking. Please keep me in your prayers. Jana. JByers4u@aol.com
David M, December 31, 1999 - Hi, regarding my previous post on December 30, I gave the wrong impression; sorry. I do not want to lower my blood pressure, since it is low enough. This is what cocerns me about Gingko, however. Does it have a tendency to lower blood pressure? Any other suggestions welcome. Why no replies from men? Has nobody else got this problem? email@example.com
Jon's December 31 reply to David M's December 31, 1999 - Hi David, I know that both heart failure and blood pressure lowering drugs, especially beta-blockers, can cause impotence either sporadically or permanently. As long as I can find that darned string, I do ok but I'm sure some of the guys out there will e-mail you about the subject. ;-).
About ginko biloba, there is some information in the text articles available for download from this site, and there are some herbal info links at the Links page as well. In the next few days, I will also be uploading a new version of the healthcare Urls file for download. Jon.
Donna, December 31, 1999 - Hi Jon and all, I want to wish everyone a very happy and healthy new year. Donna. firstname.lastname@example.org
Donna's December 31 reply to Missy's December 31, 1999 - Hi Missy, You brought up a very good point. When I saw the doctor who is charge of transplants, she told me to make up a card and carry it in my wallet at all times. Also my HMO sent me a card to carry with all the info, you just had to fill in the spaces. Donna. email@example.com
Joy R's December 31 reply to Missy's December 31, 1999 - Hi, Due to a suggestion of Jon's awhile back, I printed all the names of my doctor, my diagnoses, allergies, meds and brief medical history along with my insurance information. On Christmas Eve, I mixed up my IV pumps and used the wrong one to give my dobutamine. The dobutamine goes at a much lower rate of only 20 an hour so I ended up in the emergency room with a heart feeling like it was going to explode. The triage nurse was so pleased with my medical information and explained how much time it had saved him. He said if everyone would have a copy to bring with them, not only is it a time saver not having to ask the questions, but if one couldn't speak, it would be so important to have this information.
So all of you out there without your medical history information, now is the time to do it for the new year. Keep a copy in your car and in your wallet. Like Missy said, even EMTs need that information. A few months ago when I was hospitalized and went to the ER via EMS, the EMTs had the same information. I even put in phone numbers of whom to call, and on the way to the hospital they were calling my husband and my cardiologist; Best thing I ever did was follow Jon's advice. Thanks to you and to Missy for reminding us. firstname.lastname@example.org
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.