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

Barb L S 7-16     to Tom S, Paula, Disability & more
 
Jean C's 7-16 reply to Barb L S' 7-15     that memory thing
 
Ben B's 7-16 reply to Doug K's 7-15     diastolic dysfuntion, Coreg, EF versus function, & more
 
Laura 7-16     intro, seek San Diego support group & more
 
Doug K's 7-16 reply to Ben B's 7-16     glad it helped & more
 
Robert N 7-16     intro - CHF from chemotherapy - anyone else?
 
Jeanette 7-16     I'm back, update
 
Barb L S' 7-17 reply to Jean C's 7-16     thanks, not being alone
 
Phyllis A's 7-17 reply to Robert N's 7-16     CHF from chemo & radiation
 
Mary H 7-17     what a monitor experience!
 
Robin Lynn's 7-17 reply to Donna McGowan's 7-15     hang in there & memory trouble
 
Richie 7-17     intro, how do I get by now?
 
Hope's 7-17 reply to Cheryl's 7-13     muscle pain from Zocor
 
Tom S 7-17     effects from Coreg dose changes
 
Jon's 7-17 reply to Tom S' 7-17     effects from Coreg dose changes
 
Shirley's 7-17 reply to Robert N's 7-16     CHF from chemo and radiation
 
Donna Z 7-17     to Gail C
 
Jon 7-17     new site, so to speak
 
Diane P 7-17     I suspected & rehab confirmed it
 
Mike W 7-18     congratulations on move
 
Mike W's 7-18 reply to Diane P's 7-17     dealing with emotions
 
Lynn M's 7-18 reply to Barb L S' 7-15     memory loss
 
Jeanette W's 7-18 reply to Richie's 7-17     coping financially
 
Kris Jones 7-19     update, prayer request
 
Gatha Elliot 7-19     migraine questions
 
Jon's 7-19 reply to Gatha Elliot's 7-19     migraine meds can be dangerous & more
 
John 7-19     side effects & arthritis pain questions
 
Rick M's 7-19 reply to John's 7-19     arthritis pain, side effects & more
 
Donna McGowan's 7-19 reply to Robin Lynn's 7-17     thanks; is my cardiologist a CHF specialist?
 
Frank Smith's 7-20 reply to Donna McGowan's 7-19     CHF specialists
 
Jon's 7-20 reply to Frank Smith's 7-20     identifying CHF specialists
 
Jon 7-20      To John S
 
Barb L S' 7-20 reply to Donna M's 7-19      finding & dealing with doctors
 
Bill D's 7-20 reply to Donna M's 7-19      finding & dealing with doctors
 
Donna Z's 7-20 reply to Donna M's 7-19      CHF specialists
 
Donna Z 7-20      to Walter K
 
Cheryl G 7-20      thanks everyone, Zocor, diaries & more
 
Lydia Moore 7-20      Coreg concerns
 
Jon's 7-20 reply to Lydia Moore's 7-20      Coreg, numbers, jobs, insurance & more
 
Roz' 7-21 reply to Jon's 7-20      Coreg, memory & more
 
Madelyn J's 7-21 reply to Jon's 7-20      Disability & how to find & hold a job?
 
Jeremiah Baer 7-21      real sleeping problems, seek advice
 
Jana B 7-21      update - we do get better sometimes!
 
Ginger 7-21      prayer request & more
 
Stephen Julsing 7-21      MyoVive results, thanks & more
 
Robert N's 7-22 reply to Shirley's 7-17      similar problem, like sharing info & more
 
Robin Perrett 7-22      hey Jon, books, prayer, little children & more
 
Jon's 7-22 reply to Robin Perrett's 7-22      writing books, prayer lists & more
 
Jan's 7-22 reply to Robert N's 7-16      chemo & radiation induced CHF
 
Ginger 7-22      changing e-mail addresses, angels
 
Walter K 7-22      what's a healthy Vo2max result?
 
Jon's 7-22 reply to Walter K's 7-22      I don't know
 
Laura 7-22      has anyone heard of this alternative treatment?
 
Bill M 7-22      living despite illness
 
Donna Z's 7-22 reply to Walter K's 7-21      Vo2max test results
 
Rick M's 7-22 reply to Laura's 7-21      about that treatment
 
Ginger's 7-23 reply to Laura's 7-21      a 2nd opinion first would be good & more
 
Donna Z's 7-23 reply to Laura's 7-21      be very careful, questions
 
Donna Z 7-23      how do I eat low sodium on the road?
 
Rick M 7-23      my bridge is temporarily off the market
 
Walter K's 7-23 reply to Laura's 7-22      magnets, magnetism, polarization & more
 
Tom S 7-23      dizziness
 
Jon 7-23      update on reducing my Coreg dose
 
Jeanette's 7-23 reply to Rick M's 7-22      don't get on her about it
 
Jon 7-23      posts' intent
 
Jack's 7-23 reply to Laura's 7-21      about this treatment
 
Jack's 7-23 reply to Walter K's 7-23      about magnetism & more
 
Walter K 7-23      about insulin
 
Karen K's 7-23 reply to Donna Z's 7-23      low sodium diet & eating out
 
Maggie S' 7-23 reply to Donna Z's 7-23      low sodium diet & eating out
 
Beverly C 7-24      weight gain & Coreg
 
Jon's 7-24 reply to Beverly C's 7-24      weight gain and blood sugar on Coreg
 
Tom S' 7-24 reply to Donna Z's 7-23      eating out
 
Jon's 7-24 reply to Tom S' 7-24      too many high sodium meals
 
John's 7-24 reply to Donna Z's 7-23      eating out, health food restaurants
 
Jeff Mecham 7-24      question about LVADs & headaches, stroke risk
 
Walter K's 7-24 reply to Jack's 7-23      golden opportunities
 
Barb L S 7-24      allergy meds & depression
 
Jon's 7-24 reply to Barb L S' 7-24      allergy meds & depression
 
Rick M 7-24      eating out
 
Darlene Allan 7-24      intro
 
Barb L S' 7-24 reply to Jon's 7-24      thanks, depression & more
 
Donna Z 7-24      thanks, the problems of eating out
 
Donna Z's 7-24 reply to Laura's 7-22      I asked my doc about it & more
 
Jon 7-24      bios & Who's Who
 
Bill C's 7-24 reply to Jon's 7-24      Coreg & blood sugar - think about getting tested
 
Donna Z's 7-25 reply to Barbara L S' 7-24      allergy meds & CHF
 
Ron 7-25      NSAIDs and CHF Url
 
Sharon J W 7-25      eating out
 
Elaine 7-25      thank you & more
 
Donna Z 7-25      useful Url
 
Guy's 7-25 reply to Laura's 7-22      make a stop on the way, maybe?
 
Frank S' 7-26 reply to Guy's 7-25      questions about Stanford facility
 
Lydia Moore 7-26      reasons for reducing Coreg?
 
Jon's 7-26 reply to Lydia Moore's 7-26      reasons for reducing Coreg
 
Ranelle 7-26      taurine & CoQ10 supplements questions
 
Tom S 7-26      bug-spray syndrome
 
Jon 7-26      for everyone
 
Rick M's 7-26 reply to Tom S' 7-26      for everyone
 
Jon 7-27      mailing lists
 
Mary H 7-27      does anyone else take these meds?
 
Ben B 7-27      Robert Farish, those who fade away
 
Darlene Allan's 7-27 reply to Barb L S' 7-24      it will pass & more
 
Ginger 7-27      palmetto bugs, relatives, e-mail & more
 
Tom S 7-27      palmetto bugs, ants & more
 
Carol W's 7-27 reply to Barb L S' 7-24      coping with depression episodes
 
Rick M 7-27      ants, magic potions & Coreg
 
John Len's 7-28 reply to Tom S' 7-27      getting rid of roaches
 
Tom S' 7-28 reply to Rick M's 7-27      about those ants
 
Robin Lynn 7-28      bugs, & to Barb L S about depression
 
Jon 7-28      please read
 
Ginger 7-28      has anyone heard from Freddie B?
 
Joe S' 7-28 reply to Ginger's 7-27      bugs, and sweating & potassium question
 
Jeanette 7-28      to Jon about e-mail
 
Donna Z 7-28      question for all my fellow diabetics
 
Mary H's 7-28 reply to Jon's 7-28      about those pooter problems & the bug thread,...
 
Jon's 7-28 reply to Mary H's 7-28      pooters problems & bugs
 
Laurie 7-28      wedge pressure & chemo questions
 
Jon's 7-28 reply to Laurie's 7-28      wedge pressure & be cautious!
 
Frank Smith's 7-28 reply to Robin Lynn's 7-28      depression
 
Rosemary 7-28      depression
 
Ernest D 7-29      Coreg - lower dose does me good
 
David 7-29      SSD questions & more
 
Jon's 7-29 reply to David's 7-29      I don't know but your meds need review
 
Tom S' 7-29 reply to Donna Z''s 7-28      sugar control, also anticide update
 
Christy P 7-29      is chronic yawning common 'round here?
 
Doug K's 7-29 reply to Christy P's 7-29      chronic yawning & daytime sleepiness
 
Barry Weiner 7-29      CHF & testosterone research question
 
Bill D's 7-29 reply to Ernest D's 7-29      lower Coreg dose may work well
 
Bill D's 7-30 reply to David Tucker's 7-29      about those meds
 
Ruthie A 7-30      update, thanks, & about sodium laden meals
 
Dave Kreifeldt's 7-30 reply to David Tucker's 7-29      SSD reviews timing
 
Tom S' 7-30 reply to Barry Weiner's 7-29      about testosterone & bugs update
 
Jean C's 7-30 reply to Doug K's 7-29      yawning & fighting sleepiness
 
Jon 7-30      Jon's e-mail addresses
 
Rick M 7-30      Rick's dot com is in business!
 
John Len's 7-30 reply to Jean C's 7-30      Url for a sleep apnea forum
 
Claire 7-31      does humidity bother anyone else?
 
Ernest D's 7-31 reply to Bill D's 7-30      lower doses of Coreg
 
Ernest D's 7-31 reply to Barry Weiner's 7-29      testosterone & CHF
 
Roz W 7-31      yawning, question
 
Donna Z 7-31      artificial heart article
 
Tom S' 7-31 reply to Rick M's 7-30      the great ant experiment
 
Jean C's 7-31 reply to John Len's 7-30      sleep and snoring
 
Krista 7-31      seek Coreg experiences
 
Dee D 7-31      are cold clammy sweats normal for CHF?
 
Tom S' 7-31 reply to Dee D's 7-31      have you been checked for diabetes?
 
Rich's 7-31 reply to Claire's 7-31      humidity clobbers me too
 
Michelle 7-31      how much potassium do you take?
 
Rosemary F 7-31      I get the sweats too
 
Phyllis A's 7-31 reply to Laurie's 7-28      chemo, radiation, and heart failure
 
Bill D's 7-31 reply to Michelle's 7-31      potassium replacement
 
Tom S' 7-31 reply to Claire's 7-31      heat and humidity, potassium replacement
 
Mary H 7-31      alternate ant "therapy"
 
Ernest D's 7-31 reply to Krista's 7-31      Coreg side effects timing
 
Barbara S' 7-31 reply to Claire's 7-31      heat and humidity strategies


Barb L S, July 16, 2000 - Hi Tom, Thanks, that's cute. <lol> How are you doing? Well, I hope and pray. That is me you've just explained up there.
     Hello Paula, It's nice to see you here. How is Anthony doing? I have a 2½ year old son named Ali. He's finished testing for CM, as a result of a Coxsackie virus. He has to go back in another 6 months for more tests. I don't know anything about Coreg; just that I can't take it. Someone will help you though. Give Anthony a kiss and hug for me. Disability: Pretty much what Jon has said is true here in Jersey also. Good luck. Musicalheart@hotmail.com


Jean C's July 16 reply to Barb L S' July 15, 2000 - Hi Barb, About memory, mine went bad with my first heart attack many years ago. My family, friends, and I just cope with it and I try to follow 3 rules:

  1. Do it now so you don't have to remember it
  2. Write it down and this applies to people who want me to do things too
  3. I forgot number 3

     You can blame bad memory on oxygen deprivation or just the fact that you've learned so much in life, there isn't room in your brain for more and something has to fall out before something else can get in. Hang in there. Jean C. ojean@oz.sunflower.org


Ben B's July 16 reply to Doug K's July 15, 2000 - Hi, These posts about diastolic dysfunction and Coreg give me a logical reason why EF is sort of unreliable in predicting how a person feels. A lot of diastolic dysfunction people have normal or near normal EFs but don't feel that great. This is logical because I would rather have 20% of a cup of blood pumped around my body, than 50% of a thimble full. If you don't take it in, you can't pump it out, as someone else said. It also seems some people feel worse on Coreg. Since Coreg slows the heart rate down, more blood may pump per beat but if there are less beats per minute, less blood overall may pump around. Still, this slowing of the heart is better for the heart muscle than constant rapid beating and helps slow deterioration and enlargement. Assuming the desired end result is more blood pumping and more efficient use of the blood being pumped, I think it explains why the cardiopulmonary stress tests (Vo2max) are better indicators than EF for overall cardiovascular function. The EF can, I think, predict trends in the same person but can't really be compared person to person. I have only systolic dysfunction myself, at least for now, but these posts have helped explain some things to me. bdbrinkman@juno.com


Laura, July 16, 2000 - Hi, My name is Laura and I was diagnosed with CHF in January of this year. I thank God that I found this web site! I am 45 years old and have always been in excellent health. I am a vegetarian and health nut, with strong spiritual practice. Now I am learning to adjust to coping with all these heart medications. I have a tiny frame, now down to 104 lbs and have lost weight. I am having lots of SOB, some chest pain, and am trying to figure out what is causing what. Coreg is really tough for me and I am just up to 9mg per day. Any suggestions?
     I also implemented an excellent nutritional program that is helping a lot, based on the book, "The Metabolic Typing Diet" by William Wolcott. I think CHFers might want to know about this system because it is completely individualized according to your metabolic type, and how you assimilate nutrients into your cells. It has assisted me greatly with digestion and allergies but about CHF, it is too soon to tell, I guess. I would like to make contact, perhaps find a support group in San Diego, if one exists. I welcome you to contact me. Thanks and blessings, La. lauralfine@aol.com


Doug K's July 16 reply to Ben B's July 16, 2000 - Hi Ben, I'm glad our discussion has helped you to understand what is going on in the heart better. It is much more complicated than we realize. That is why there are no easy answers to our problems, I guess, but with some more time I think they will figure out how grow a new heart, etc,... Good luck to you. dgknuth@earthlink.net


Robert N, July 16, 2000 - Hi, I am brand new to this site. I was diagnosed in February of 1999 with CHF. I am on the usual meds. I am 42 years old and live in the Boston, Massachussetts area. I am also taking CoQ10 and multi-vitamins. How many people out there have this problem due to chemotherapy treatments? That is what caused mine. I am curious to know. Thanks for listening. bignick42@aol.com


Jeanette, July 16, 2000 - Hi Jon and everyone, I know it has been awhile since anyone has heard from me. Between being very ill and trying to get a vacation in, this last month, my life has been so hectic; Not to mention computer problems. It's enough to drive the sane insane, but since I am already nuts, it didn't take me quite as long to pull my hair out and scream! ;-) I have had a massive infection on my leg, which is now starting to feel better. My computer is now fixed and thank goodness for the little things. I just wanted to let you know what was going on and that I'm back so you can run and hide! <g> I hope all of you are doing well and I'm apraying for ya all the time. Take care, Jeanette. jeanette1@93qmail.com


Barb L S' July 17 reply to Jean C's July 16, 2000 - Hi Jean and thanks a lot, I have been getting a lot of help and appreciate it so much. I won't say that I'm happy knowing others have this as well but it is a comfort to know that I am not alone. I do write things down a lot and also read. I think I'll go with the second part of your analogy. I just can't fit anymore in there. <g> God bless, Barb. Musicalheart@hotmail.com


Phyllis A's July 17 reply to Robert N's July 16, 2000 - Hello Robert, I too have CHF, hypertrophic cardiomyopathy and asthma from chemo and radiation. I had breast cancer and received the following 5 FU, Adriamycin, and cytoxin. I was diagnosed in 1993, had some treatment before and after surgery, which took it into 1994. I went back to work. In 1995 I started having symptoms but didn't know what it was yet. In 1996 I was diagnosed with asthma and then in 1997 my husband took me to the hospital with chest pain and shortness of breath. I was there for about 4-5 days and was told I had the same disease the young basketball player who dropped dead on court had. It's a good thing I got there when I did. So if you have any questions for me, you are more than welcome to e-mail me. God bless, Phyllis A. phylcasurv@msn.com


Mary H, July 17, 2000 - Hello ya'll, I just had to get this off my chest and into the open about my doc. He had the great idea of wearing a wrist monitor to figure out my PVCs. I am allergic to tape and therefore a holter monitor is out of the question. Anyway, I was to lick my 2 fingers and press the 2 little metal buttons on each side to complete the circuit to make a 5 minute long EKG on my wrist. Now, here comes the problem: We all know that most of our pleasant skips and thumps happen when? When we are in a dark room trying to sleep! Thus came the problem of trying to lick, squeeze the buttons and try to know when the thumps and bumps would occur. After a month of this, I had to mail this monitor back to Chicago. Then, came the fee: $650 to tell me he knows no more than he did before. That is just the monitor company fee, not his. Now, couldn't one of you told me the same for a lot less money, time, and saved me some finger licking?! Not to get me started again on the squeezing of buttons when I thought the ticker may just act up. Boy, do I feel better! ;-) That's all and good night from Mary H. M123_@excite.com


Robin Lynn's July 17 reply to Donna McGowan's July 17, 2000 - Hi Donna, I dont know anything about SSI or their laws but my heart just hit my knees when I read your post. One thing I want to tell you is that many of us here will be praying for you so please try to keep the stress down (easier said, I know) and if you are a Christian, give this one to Him quickly. I know how hard that can be. We always think we have to work real hard at it, big or small, and it is hard for us to let it go. I will be praying that something will happen to get you out of this jam you're in and have faith that He will bring an answer to you. Also, start writting letters to your Congressmen, Senators, whoever you can in the offices of government that you can think of. Someone already pointed out that this is an election year and you never know. Good luck to you and may God be with you.
     My memory is also getting worse. The funny thing is that I can remember 15 years ago better than I can remember 15 days ago. I have read that beta-blockers affect short term memory and now they are saying it could possibly affect long term as well. God's blessings to you all and pennies from heaven to Donna, Robin Lynn. heartful99@hotmail.com


Richie, July 17, 2000 - Hi all, I am new at this so here it goes: I am 37 years old and was told in March that my heart was pumping at 20%. I have high blood pressure and am diabetic, and now have CHF and cardiomyopathy. I can't go back to work and my disability has run dry. What can I do? I am on 15 different meds on top of all my bills. Thanks, Richie. cityboy548@aol.com


Hope's July 17 reply to Cheryl's July 13, 2000 - Hi, My husband suffered a lot of pain when he was taking Zocor. His pain went away when he stopped taking it. This happened for a female friend of ours, too. hlmcneil2@netscape.net


Tom S, July 17, 2000 - Hi, As part of a diagnostic process to determine if Coreg was the root cause of severe fatigue I have been experiencing lately, my cardiologist reduced my daily Coreg dose from 50mg to 25mg total a day. That involved taking two 12.5mg pills twice a day for 3 weeks. The 3-week trial was up on Thursday, July 13, 2000. Having noticed no significant difference, I went back to 25mg twice a day for a total of 50mg Coreg per day. Saturday morning I woke up with a wierd dizzy feeling, wierd in the sense it is not a room spinning dizzy, but an "I got up too fast" dizzy feeling in the head. As of this writing it is 10:15am Monday morning and the feeling has persisted. Can I say there is a correlation between Coreg dose and dizziness? Perhaps. I know I can almost definitely rule out the drug as contributing to fatigue. I'll be giving my cardiologist a call later in the day concerning the results of my Coreg abstinence. I just thought this would give you Coreg users a little food for thought. bhigheart@hotmail.com


Jon's July 17 reply to Tom S' July 17, 2000 - Howdy-doo Tom, This is so weird! I am very slowly reducing my Coreg dose and have experienced the exact same feeling, which persists for awhile after each dose reduction! It's definitely related to Coreg but the whys and wherefores I don't understand. Obviously, blocking the "normal" action of our nervous system has strong effects on our whole body. Jon.


Shirley's July 17 reply to Robert N's July 16, 2000 - Hi Robert, Congratulations on finding this site. It has been a wealth of information and help to me. I have DCM and CHF as a result of the chemotherapy treatment I had 8 years ago for leukemia. My heart problem did not surface until November, 1997. It is considered a "late effect" of the cancer treatment. I wonder how many people have this problem as a result of chemo, too, and will be interested in the responses you receive. I have not been successful in finding any definitive studies of cancer treatment late effects in adult cancer survivors. At present, the studies being done on late effects are being done at pediatric oncology centers and focus on the effects of chemotherapy and radiation treatments for childhood cancers. The results of these studies will be helpful to all of us, of course. I've been invited to participate in a seminar in October entitled "Cancer Survivorship Throughout the Lifespan" and hope to glean information and resources from the attendees and speakers at the conference. I'll be more than happy to share the information I gather; Information is a valuable tool! How long ago was your cancer treatment and where are you treated for your CHF? I am under the care of a specialist at MGH. Shirley. srgrandl@snet.net


Donna Z, July 17, 2000 - Hi everyone, Gail C, I lost your e-mail address. I wanted to let you know that I sent you the article about the Heart Jacket. I hope you get it soon, Donna. dzak@worldnet.att.net


Jon, July 17, 2000 - Hi everyone, Well, I've been saving my pennies, doing a lot of thinking and some praying, talking with my wife about it, and today I bought a domain name and space on a commercial server, who is cutting me a good deal due to the nature of the site. If you find yourself being redirected here and there to a site at www.jonsplace.org, relax; you're still on my site, it's just my "new" site. The process of transferring pages will be long and slow. I will leave redirects up on every page so no one ever gets lost or confused. However, you might want to change your bookmark whenever you get redirected. Jon.


Diane P, July 17, 2000 - Hi, I read daily but post rarely. I am 15 months post-CHF with a Vo2max of 15. Today I went to cardiac rehab for the first time. I was on a stairmaster-type thing that reclined. At the lowest setting I desaturated between 4½ and 5 minutes. I was fine at 4½ but under 80% at 5 minutes. I desaturated to less than 80% walking on the tredmill at one mile per hour for one minute. I did not reach my high of 96 for over 5 minutes. That was rehab for today. I am going 3 times a week but this was the first time I had to face clinical definition of my condition. I did discover that when I break out in a sweat and feel clammy at home, I was desaturating. Bah, humbug! I now have proof of what I suspected. I have never wanted to be wrong so badly in my life. I will be careful and exercise with supervision, and beat this thing but boy, am I starting in a hole! Pity party by Diane. fjpage@n-jcenter.com


Mike W, July 18, 2000 - Hi Jon, Hearty congratulations on the move to your own domain and virtual server. Bye bye Geo, although they have certainly served their purpose, this is a great move up and forward. I just want to say that although you get feedback and I'm sure many personal e-mails about this site and your hard work, you will never never really know how many people you and the active members of this site help, in grand ways and in just making it through the day sometimes. Peace, Mike Wafkowski. mikeyw@sohogurus.tzo.com


Mike W's July 18 reply to Diane P's July 17, 2000 - Hi Diane, I think it less than presumptious of me to assume that many, if not most of us have, whether at the very beginning at diagnosis or even occasionally now, toy with denial to some degree! Kind of the human thing to do, no? ;-) Welcome to the group of box people, all of us building a box to stand on to see over the top of the hole, out of whatever materials are at hand. Pity comes and goes, as do all of our emotions, each valid and correct in that is the way we do feel. Peace and good constructing, Mike W. mikeyw@sohogurus.tzo.com


Lynn M's July 18 reply to Barb L S' July 15, 2000 - Hi Barb, I read somewhere that one of the organs deprived of oxygen in CHF is the brain, thus the memory loss. Unfortunately, I forgot where I read it. Honest! If you've ever had heart surgery and been on the heart-lung bypass machine, this can also cause memory loss. They think it may be caused by micro-blood clots thrown off to the brain by the machine, I read somewhere, also now forgotten. Between the CHF and the 2 heart operations I've had, it's a wonder I remember my own name. Liz, er, Lynn, I think. techndex@pacbell.net
 
Jon's note: Don't forget the "Find" function in your browser, under "Edit" on the menu at the top in Internet Explorer 5


Jeanette W's July 18 reply to Ritchie's July 17, 2000 - Hi Richie, I would look into Social Security and fast. They will help you get SSI and/or SSD but you have to apply and the waiting period is long. Still, if you do it now and they approve you, you will at least be able to pay some bills and get medical support for the bills. I would also try your local Social Services, Medicaid, food stamps, etc. They will help you if you have no money coming in. I am on Medicaid, food stamps, SSI and SSD. I was approved within the 6 month waiting period for Social Security. I hope this has helped you go in the right direction. Also, try Jon's Social security page here. It gives you all the info you will need. Having DCM myself, I know what you are going through; Remember that you are not alone. We are here to help all we can. Good luck and God bless. Let me know how you make out. Jeanette W. jeanette1@93qmail.com


Kris Jones, July 19, 2000 - Hi, I'm just letting everyone know that things are starting to go downhill a little bit. I spent the night in the ER last night. They said my heart is starting to swell up a bit again. I just wanted to ask that everyone keep us in your prayers. We need prayers on finance and the heart problem; the bills from this are really piling up on us, which causes more stress. Just pray that we will find a way to get around all of this and to help keep our faith. Thanks to everyone for your support and prayers. God bless all of you, Kris. kris123@gamewood.net


Gatha Elliott, July 19, 2000 - Hi, With all the problems with CHF and what goes with that, I have developed migraine headaches almost every day. I understand that you have them Jon, and I was wondering what you take for them, how often you have them, and how do you manage to live with them? I was given Maxalt-MLT 10mg and Imitrex samples to try. So far I have only taken the Maxalt, which is a tablet that goes under the tongue like nitro and dissolves. It will work in about 5 minutes if I catch the headache early enough. The ones that wake me up in the middle of the night seem to take forever to go away. Thanks guy, for your help. Jell855859@aol.com


Jon's July 19 reply to Gatha Elliott's, July 19, 2000 - Hi Gatha, First, Do not take the Imitrex! It can cause serious heart arrhythmias and tachycardia, which is the last thing you need! I took Imitrex with fairly good results before I got CHF but my doc yanked it away from me immediately when I was diagnosed with CHF. You should also not take Maxalt if you have "history of heart or circulatory disease, including heart attack, angina (chest pain), or stroke" according to John Hopkins' web site.
     I don't get migraines as often as I used to and they don't last as long. Normally, after age 50, they just go away, and I am slowly approaching that age group. For a severe migraine, I trot to my doctor's and get a shot of knock 'em out juice, then go home and sleep for a day. If it isn't that severe, I take tramadol or if I have a run of them, I get some Vicodin from the doc and take those. Living with migraines is kind of like living with tinnitus (ringing in the ears) for me. I've had both for so long I can't remember what it's like not to have them. Jon.


John, July 19, 2000 - Hi, I am a 73 year old with a history of heart attack and heart surgery 29 years ago. My first bout of CHF was 3 months ago. I am taking Coreg, Accupril, and Lasix. I am having lots of side effects. What do you all take for arthritis pain? Vioxx is worrisome to me and I am not sure what to do. JPCampo26@hotmail.com


Rick M's July 19 reply to John's July 19, 2000 - Hi John, You 73 year old kids are always complaining about something. <G> From my lofty perch of age 75 (and a half) I will try to give you the benefit of my vast experience. ;-) There has been some discussion here about the sodium retaining aspects of NSAIDs but I have been on 500mg Naproxyn breakfast and dinner, for many years. I also take Cytotec 3 times a day to keep the Naproxyn from upsetting my stomach. I have been under the care of a really good CHF doc ever since I joined this club some years ago and at my request he is also my primary care doctor; at my request - think of the money I save <g> - so there are no secrets about my total medications. (see my bio for a complete list). My diabetic doc is a member of the same medical group so all my care providers know all about me and my medications. They share blood test results, etc,... As for having lots of side effects, it comes with the territory and when you get as old as I am, these things won't bother you as much. ;-) rearadml@iu.net


Donna McGowan's July 19 reply to Robin Lynn's July 17, 2000 - Hi Robin, Thank you for your prayers and concern about my situation with SSI. I know there is a way to solve my problem somewhere; I just have to find it. When you feel bad all the time it is easy to get overwhelmed and think you are in a no-win situation. I have a question for anyone: How do you know if your cardiologist is a CHF specialist? Should it say so somewhere or do you have to ask him? My doctor has nothing in his title or on his signs that says he specializes in CHF. I guess all this time I had assumed a cardiologist was a CHF specialist. I now realize I was wrong. Donna M. Carly40479@aol.com


Frank Smith's July 20 reply to Donna McGowan's July 19, 2000 - Hi Donna and everyone, I have been searching for a real live CHF specialist since 1995. I am not sure thay exist per se, and I doubt that they advertise, anywhere. Also, most of the so-called associations and specialty groups really will not distinguish between cardiologists and ANY specialists within their grouping, at least, I am not aware of any. Jon's explanation of what a CHF specialist's profile should be is about as close as we are going to get without giving each doctor (cardiologist) the third degree as we "interview" them. I am currently interviewing a group of heart doctors at a CHF clinic in San Diego, and they specialize in cardiomyopathy and CHF patients. They also have a transplant program and are experimenting with various VADs. During my next visit to San Diego, I plan to ask the doctor who will see me, just what he knows about CHF specialists, and if he believes he qualifies; and if so, why. Does anyone else know any other way to qualify these people? Later, Frank Smith. marquasmith@lycos.com


Jon's July 20 reply to Frank Smith's July 20, 2000 - Hi Frank, Yes, there is a way. Cardiologists should list "special interests." This is the standard way a cardiologist identifies his prime area of practice and research. It may be congestive heart failure, arrhythmias, some form of testing such as echocardiogram or EPS, CABG/revascularization or just general cardiology, but all cardiologists should list at least one prime area of interest - on their card, their practice description, and their web site, as well as giving this info to all prospective clients. Jon.


Jon, July 20, 2000 - Hi, To John S, I need a valid e-mail address so I can put up your post. Thanks, Jon.


Barb L S' July 20 reply to Donna M's July 19, 2000 - Hi Donna, Ask him straight out, seriously. Don't hold back, just ask him. It took us about 2-3 months before we even attempted to ask because sometimes doctors can seem very intimidating. It took us that long because my cardiologist was not only very intelligent but he had also saved my life on January 7, 1997. I didn't feel confortable with him though, and we asked if he was "up" on the newest medical breakthroughs and we all danced around that "important subject" far too long. We danced around with it for about 3 months, asking different questions every week. We never heard anything we needed to hear so my fiancé took me over to Temple University Hospital and the rest is history. I go somewhere else now because I didn't get what I needed there either. I also stayed with them because of their name. It is a hard decision: what doctor do I see? To me, a good doctor doesn't need to act defensive in any way when he gives important answers to our very important questions. They are ony his creditenials and what he can or cannot do to help you, Donna. Take care, Barb. Musicalheart@hotmail.com


Bill D's July 20 reply to Donna M's July 19, 2000 - Hi Donna, I have found many CHF specialists work in a Heart Failure Clinic but some of them are in a private practice. The next step down is a cardiologist who "expresses an interest" in CHF patients. The best way to find out is just ask him. <g> He will tell you who the specialists are and who the "Interested" guys are. I'm still sticking with a regular cardiologist because I'm not all that bad off yet. Bill D. billdog@gate.net


Donna Z's July 20 reply to Donna M's July 19, 2000 - Hi Donna, No, a regular cardiologist is not a CHF specialist. I have 2 cardiologists: a regular doctor who went got a medical degree and went on the specialize in cardiology, and I also have a second doctor who did the same but went on even further in her education and totally specializes in CHF. My regular cardiologist told me he could treat me but that he preferred I go into the city and see this specialist whose specialty is CHF (actually her specialty is DCM). My first cardiologist studied under the second and she is his mentor. I also think it takes a great doctor to admit they can't handle something since so many of them have huge egos and won't admit they don't know everything. Donna Z. dzak@worldnet.att.net


Donna Z, July 20, 2000 - Hi Walter, I did get your e-mail but unfortunately lost your e-mail address. I will be out of town for the next few days so please e-mail me again and I will get back to you. Sorry, Donna Z. dzak@worldnet.att.net


Cheryl G, July 20, 2000 - Hi, I just wanted to say thank you to everyone for your help. I'm still in pain but hopefully if I have to live with it, I'll know it's from CHF and not caused by something else. I talked to my cardiologist yesterday and she took me off Zocor and ordered a blood test to find out if that could be it. She said Zocor could waste the muscle away which could cause soreness and pain. I learned one very important lesson: It is wise to keep a diary. My mind isn't what it used to be. I totally forgot that my Zocor had been increased in May right before the pain started until I read Hope's reply. Coincidence? I don't know but I plan to find out. Thank you, everyone. I would not have known where to start without you. Cheryl. GarciaA@prodigy.net


Lydia Moore, July 20, 2000 - Hi Jon, I hope all is well with you and your family. I have not posted in a long time but I have been reading the latest posts. You mentioned somewhere that you decreased your Coreg medication. Can you tell me why? I have had mine increased to 12.5mg three times a day and have found it harder to take a deep breath. When I lie down, just before falling asleep, I get an adrenalin rush and I gasp for air real quick. Have you had any of these symptoms? I would greatly appreciate you sending me a message back as I get scared when there are changes. Thank you and God bless, Lydia. Flanders66288@cs.com


Jon's July 20 reply to Lydia Moore's July 20, 2000 - Hi Lydia, Everyone is doing pretty well around here currently. My wife really likes her new job and my daughter is managing to put up with her dad for the summer okay. ;-)
     I have entered battle with my own CHF doc about test result "numbers" and how they relate to real life - namely mine. My numbers are up (EF of 40-45% and Vo2max of 20% - I think) but my ability to function is down! Apparently I am one of a growing number of CHFers in this position (per my own CHF doctor): Our numbers go up due to Coreg but our ability to function gets no better at all and may even go down. Still, Social Security Disability review is just going to look at our numbers.
     I have had no new problems with Coreg, just the usual memory and weight problems. I believe that I need to find out soon how much of my memory trouble and difficulty learning entirely new things is related to my weak heart and how much is caused by my meds. If it is the meds, I may be coming off Coreg to see how I do over time.
     My dilemma is this: If my numbers increase, I will likely lose my SSD. I will also lose my disability pension and 2 of my 3 my health insurances, as well as 50% of my prescription drug coverage. I can't take a hit like that and survive, so I would naturally have to find a job. Holding a job is going to be extremely difficult at my current level of physical disability, so it would need to be a desk job - a first for me. I would also have a terrible time holding a desk job because of my mental fogginess and memory shortfall. That's why I need to find out now what is actually causing these problems, so I know what to expect and how to prepare myself for a possible need to enter the job market. Contrary to what people seem to think, I in no way have the skills necessary to be a full-time webmaster commercially - not even close.
     So don't worry due to my post. My experience with Coreg has been pretty good and your symptoms sound fairly normal for a CHFer on dose increases. However, if you don't get over them in a short time, please be sure to push your doctor for answers; And if your symptoms scare you, do it right now. Don't hesitate - he gets paid the big bucks - make him earn them! ;-) Jon.


Roz' July 21 reply to Jon's July 20, 2000 - Hi Jon and Lydia, Greetings to both of you and the myriad of Coreg users who post regularly. My information is pretty dated as I have been off Coreg for over 3 years but my experience may be relevant. This drug of choice for CHF was making my life intolerable. As an old person, I felt I had the freedom to choose to get off it even if it shortened what life was left. Incidentally, I have been involved as a "normal" volunteer (no laughing please) subject for a neurological study at the University of Pennsylvania on Alzheimers' disease. I was interested in the positive findings of the memory testing that I had. My scores went down with Coreg and went back up when I went off it. Incidentally, there are some great exercises to increase mental functioning that really work: one is to use your "other" hand to do a task that you normally do with your dominant hand. Amazing - just don't put your eye out with your toothbrush. <g> But put this member of Jon's Place down as a Coreg-hater, okay? Best of luck to all of you. Love, Roz. RWarriston@aol.com


Madelyn J's July 21 reply to Jon's July 20, 2000 - Hi Jon, I am now going through the loss of disability income that you describe for your future. The insurance people don't believe that anything interferes with my ability to work, including the fact that I fall asleep in the middle of working days. At the same time, no one will hire me for my former type of job because they need a person to put in full days and travel. If I try to push myself, it just snowballs until I sleep through most of the day for a couple days. I am holding a part-time job but like you said, am not up to a benefits-paying job. If anyone out there has been successful at documenting the drowsiness (from critical medications) as a part of their disability, please post. Madelyn@juno.com


Jeremiah Baer, July 21, 2000 - Hi, I am a 38 year old man and I have just been told I have CHF two weeks ago. I have had chronic high blood pressure all my life. My body builds tolerances to most medications. I am still dealing with the bad news and the doctors have been very vague. They dont explain what I have to expect in the future with this disease. I am taking Monopril and Lasix. I was taking clonidine but I cannot function on that medicine. I am glad that Jon has made this page. It helps a lot to hear from all of you who have CHF.
     I do not know any of my numbers yet, like EF. I am going to try to get disability but I know I will probably get turned down the first time. My biggest problem is sleeping. I cannot lay down for more than 2 hours at a time before I have to get up. I can take naps in a chair for about 30 minutes and then I wake up hyperventilating. The doctor I have tells me that the medicine might make it better but it has not. I know my body will make me sleep to get caught up but so far it always happens at the worst time, like when I am sitting with my family. I would love any suggestions. Thank you. jebaer@swbell.net


Jana B, July 21, 2000 - Hi everyone, By the grace of God I am just checking in with an update on my condition. I am still on low doses of Coreg, on Cozaar, Lanoxin, zestril and CoQ10. I recently added vitamin E for prevention of Alzheimers'. <g> Seriously! I no longer need the K-dur or Lasix. I can't even remember the last time I retained water. I am doing really well and feel normal again. I took a new job working part-time and am hoping to do well at it. I have been asked to come speak at a local church about my cure, so I have been praying on that. I need to get some things in order before I go off to the church and speak.
     Life is pretty exciting right now. I haven't really had symptoms since July of 1999 and now have none! This time last year, I couldn't walk down my hallway without stopping to catch my breath! I swelled up every day and had no energy. I had that stroke in July of 1999 and in May of 1999 was given 6 months to live. That date came and went in November of 1999. I am still on the list for a heart transplant but I think it will just be a formality to get taken off. I am so glad I didn't take the heart they offered me a few months back!
     I just want to encourage everyone that for some of us, we do get better. I want you all to know I pray for each prayer request Jon sends to the support mailing list. Nothing urks me more than for someone to say "I'll be praying for you" and then they don't. Take care everyone and God bless you all! Jana Byers, I don't know my EF anymore and don't care, age 37, DCM, CHF. JByers4u@aol.com


Ginger, July 21, 2000 - Congrats Jon on your own place. What I want to ask is, "Now that we have changed all our bookmarks for this, are you gonna give lessons on how to delete all the old ones we have going to your old site?!" <g> I would also like to ask everyone to remember my brother Jack in their prayers since his chemotherepy is a real tough regimen and is hard to take. Thanks ya'll. Stay well an cya's when I can. Hugs and prayers, Ginger. mystery@laker.net


Stephen Julsing, July 21, 2000 - Hi everyone, Some of you participated in the MyoVive Market Surveillance Study or MMSS. In total, now more than 150 people with heart failure have doen so. Since very significant nutrient deficiencies are reported in heart failure, MyoVive was developed as a sort of "medical food" for heart failure..
     I would like to thank everybody, especially Jon, for their cooperation. The results of the study so far are encouraging. Of those who tried MyoVive for 4 weeks, 60% experienced a positive effect, especially an increase in energy and "feeling better" as well as reduction in frequency and severity of edema and chest pain. Of course, this is not a double-blind, randomized, placebo-controlled study but nevertheless it could have shown negative results!
     We do expect to have results from placebo-controlled clinical trials within the next few weeks. Together with the positive results from the MMSS, we hope to have enogh info to show that MyoVive really is "medical food" for the dietary management of heart failure. I sincerely hope it helps you. Again, a very big thank you to all the people who participated. Best wishes, Stephan Julsing.


Robert N's July 22 reply to Shirley's July 17, 2000 - Thanks Shirley, for letting me know about your problem also. I had Hodgkin's disease in the summer of 1994 and was diagnosed with CHF in February of 2000. The doctor said it has been coming on for a few years. Adriamycin was one of the drugs I took. I am being treated at the Winchester Hospital. I would be glad to know what you can find out about this. Thanks a lot and e-mail if you want. If i don't answer right back, it is because I don't go on the computer that much. Good luck. bignick42@aol.com


Robin Perrett, July 22, 2000 - Hey Jon, It sounds like it's time to really start thinking about writing that book. <g> From what I've learned from you and seen on this site, you have the research done and just have to put it all together or maybe you could do your own "Chicken Soup for CHF" type of thing. I know this sounds outrageous but it's worth a thought. You've sure gotten yourself known over the past few years. What is this prayer list that Jana spoke of? I admit, I don't surf the site enough but I usually get on late at night and am cross-eyed by the time I read all the posts here. I want you all to know that I do pray for all of you every day. Sometimes I can't remember your names (please don't take offense) so I pray for everyone and their special needs.
     I for one know that prayer changes things. I am one good example of God's awesome strength. He took a sick, depressed housewife and turned her into a preschool teacher with the energy to teach sixteen 2 year olds about His love and all the wonderful things He has blessed us with. I thank him every day for my new life, and that new life includes my illness but is not ruled by it.
     Just for a laugh: My 4 year old daughter likes to resist her daddy just for fun, to tease him. He asked her if she was daddy's baby. She replied, "No, I'm mommy's baby." I told her that without daddies, mommies couldn't have cute little babies. My 8 year old daughter peered up and said, "Yeah, cuz daddies have to drive mommies to the hospital when the baby is coming!" <lol> God bless the little ones. Blessings and prayers to all, Robin Lynn. heartful99@hotmail.com


Jon's July 22 reply to Robin Perrett's July 22, 2000 - Hi Robin, I get told to write a book by a lot of people, including a few with money wanting to back me, but I just can't see it. If I told what got me through my illness, it would be a one word book: "Jesus." I don't think it would sell very well. ;-) I could write a book about coping with heart failure, but I'd rather just contribute a few patient-oriented chapters to a book by someone like Marc Silver, so I wouldn't be obligated to handle all the associated stress of book-selling. I'm too tired and really don't care about making money off it. Besides, my "book" is right here on this site - it is this site - and it's all here for free! You can join our prayer and support e-mail list here.
     If anyone wants to see how deeply into scientific study the heart failure supplement MyoVive is, check out this Url. I think a lot of people will be quite surprised to see how well the company behind it is pushing real scientific research into nutrients for CHF. Jon.


Jan's July 22 reply to Robert N's July 16, 2000 - Hi Robert, Add me to your list of cancer survivors dealing with long term side effects of radiation and chemotherapy. I had my treatments 22 years ago and now have CHF, dilated cardiomyopathy, pulmonary/restrictive obstructive disease, a pacemaker and had an AV node RFA last year. I was also rejected as a heart-lung transplant candidate because of the extensive fibrosis from chest surgery, radiation and chemo. The good news is that I am feeling much better these days and take life one day at a time. I didn't like going on SSD because I loved my job, but now I enjoy my husband, children, and grandchildren because I have energy to spend with them. Before diagnosis of these latest problems all I did was work and sleep. You can e-mail me direct if you'd like. I was born and raised 30 miles from Boston and now live in the Midwest. Jan. Geschuppja@aol.com


Ginger, July 22, 2000 - Hi again, This is just to let everyone know that my e-mail is changing to Angelgin@bellsouth.net. So please update it. It is already in effect and the old Laker address will not be working after probably Monday. Just so I don't look like something I am not, the angel in the name is not cause I am one, just because I collect them! <lol> My head is not that big. ;-) Stay well. Hugs and prayers, Ginger. PS. Please watch your time outside in this heat y'all. I got really sick the other day by being outside in it too long. angelgin@bellsouth.net


Walter K, July 22, 2000 - Hi Jon, I just have a quick question: What is the range of Vo2max results for someone who does not have CHF or other cardiac problems? I am due for my first Vo2max shortly and do not expect anywhere near a "normal" result but would like to know what one would be. I will ask my doctor but I think he has sugar-coated some things in the past. Thanks. HKnoth@magpage.com


Jon's July 22 reply to Walter K's July 22, 2000 - Hi Walter, This widely varies, depending on which doctor, nurse, or physiologist you ask. I know, because I've asked plenty. It varied so much depending on whom I asked (even within the same pulmonary testing establishment) that I didn't bother keeping the range of answers in a text file. Sorry. I even read a reply from a Cleveland Clinic doctor on their heart forum once about this and he disagreed with everyone else I asked (all were medical personnel involved with pulmonary testing) so I gave up. Jon.


Laura, July 22, 2000 - Hi all, I just wanted to let you know about this alternative treatment I am doing and to ask if anyone has done this or heard of it. It was originated by a cardiologist named Dr. Demetrio Sodi Pallares in Mexico City. He founded what is called "Sodi water" ; a polarizing solution used to stabilize the heart for surgery. It is a simple combination of insulin/glucose/potassium chloride to protect heart tissue. Apparently he has been using this polarizing solution in combination with magnet therapy. He claims success in reversing cardiomyopathy for many years with patients in Mexico. He has written many books on the subject. The treatment involves intravenous receiving of this solution 2-3 hours per day for 2 weeks in conjunction with magnetic therapy. This is supposed to stimulate the potassium/sodium pump in the cells as well as the production of ATP. I will be receiving this treatment sometime in the next few weeks. I would appreciate any testimonials or info from anyone knowing anything about this. Thanks, Laura. lauralfine@aol.com


Bill M, July 22, 2000 - Hi everyone, I'm happy to see Jon has his pooter working and I'm excited about his getting his own web site domain; Cool, Jon. I visit regularly but haven't posted much. I had my thallium stress test and my EF was 16%, up from 13% after my bypass and heart attack last August.
     I'm living life and enjoying each day. I feel an obligation to say that while some may feel they got a bad turn: Virus, chemo or just too many "Micky Dee'z" cheeseburgers, this life we have is just to precious to fret about. I take a pill cocktail every day and it has crossed my mind to say, "Is it worth it?" Then I'll get my son or daughter on voice chat and hear my granddaughter and ya know what, it's worth the fight.
     So while the good Lord has allowed me to survive, I say to those of you having bad days, don't worry, a good day is coming. Jon, I'm happy to see you're getting some better numbers but I know what ya mean about the how you feel stuff and how SSA doesn't really care, and that is a fact! You're just a number and that's all they deal with - numbers. We are moving next month to a smaller place and where I don't have to climb steps. Boy, those can wear me down fast! <g>
     I can tell ya all the best I feel is in a casino, with the bells, lights and complete ingnorance of being sick. It seems to be my best medicine. My kids aren't thrilled but then I keep telling them it's my money. So if you're feeling down, eat a burrito, have an eclair, go do something fun, visit the bowling alley. I guess the key word is get out and enjoy. Take your friends to the best restaurant and blow a hundred bucks and share a smile. We may be sick, we may have our bad days, but we're allowed to say today is my day to feel alive and thanks for this day, Lord, I'm gonna enjoy it. Bill M. bil1x1@yahoo.com


Donna Z's July 22 reply to Walter K's July 21, 2000 - Hi Walter, I was told anything below 14% is the cut-off for heart transplant; that's when they decide you go on the transplant list. I recently had one done and mine was in the mid to low 20s. I see Dr. B at the University of Pennsylvania on Monday so I'll let you know what she has to say. Donna. dzak@worldnet.att.net


Rick M's July 22 reply to Laura's July 22, 2000 - Dear Laura, Before you start your "sodi water" treatment, I have a bridge in Brooklyn that I could let you have at a very good price. Please reply before starting your treatment, as this is a one-time only special. Good luck. rearadml@iu.net


Ginger's July 23 reply to Laura's July 22, 2000 - Hiya Laura, I know there are a thousand alternative treatments, and every one claims it is the only thing that works, yada yada yada. Please do yourself a favor and go see a cardiologist or a different CHF doc at least for a second opinion before you do this. This is your life you're talking about and I am sure you would agree that it is worth a trip to a different doc just for another opinion. I am not saying the treatment is wrong but I am not saying it is right either. Personally I never heard of it and with all the people on this site, I am sure someone probably has. If not, that alone has to make you wonder. We care about you or we wouldn't be so concerned. As for Rick, he just wants to make a fast buck. <g> Stay well, ya'll. Hugs and prayers, Ginger. angelgin@bellsouth.net


Donna Z's July 23 reply to Laura's July 22, 2000 - Hi Laura, This treatment sounds like a hoax to me. Where is his medical data? If this treatment is working so well, why is no one doing it in the USA? Think about it. Please be careful about doing any that could possibly put your life in jeopardy. I doubt if any "sodi water" treatment can shrink your heart. I think that all this doctor is after is your American dollars. Please, please be extremely careful. I would at the least talk to a CHF doctor and see if they ever heard about this treatment and whether it could be dangerous for you. Donna. dzak@worldnet.att.net


Donna Z, July 23, 2000 - Hi, I have a question for you all. How do you handling eating out while on vacation and such? I was just away at a 2 day show with my dogs and ran into some trouble with eating out. I was very careful since I really try and stay in the 2 gram a day sodium restriction, but while away it was extremly hard to eat out. One example: I went to a Steakhouse chain and thought oh well, steak should be easy. Wrong! I ordered a prime rib and asked the waitress to please make sure no salt was added and I told her why. I think if you tell them the reason for no-salt the waitresses tend to listen more and really ask. Well, she came back and said all their steak was pre-seasoned except the new york strip, so I opted for that. Then I ordered a baked potato, only to be told the potatoes where pre-seasoned with kosher salt, so no potato. If I eat one more hamburger - not fast food ones - I'm going to scream.
     I do try and take some food with me but in this heat I don't take as much, and if I were gone for longer periods of time it could be a real problem. I would like to be able go for a longer period of time since I can still go to dog shows and show my own dogs, and as long as I can do this I will, but the food is my biggest problem. Any suggestions? I am so worried about putting my self back into heart failure while away. Donna. dzak@worldnet.att.net


Rick M, July 23, 2000 - Hi everyone, I have since been informed by Laura that she is not the "bridge buying" type and has substantial background for her interest in this "sodi-water" treatment so I have elected to take the bridge off the market until all results are in. I always get nervous around magnets, possibly because of their danger to my pacemaker. <g> rearadml@iu.net


Walter K's July 23 reply to Laura's July 22, 2000 - Hi Laura, I sincerely hope you are not spending money on this treatment that you cannot afford to throw away. I am a retired Ph.D. chemist with many publications and patents in science. I would not mention that except to lend a little credence to my remarks. I am not a medical doctor, however I do know about magnetism.
     I assume you know about MRI diagnostic tests. When you get an MRI (Magnetic Resonance Imaging) you are exposed to unbelievably strong magnetic fields. I have never heard anyone responsible claim that this magnetism affects the body in any lasting fashion, good or bad; it is only useful for obtaining diagnostic information, not for treatment. I cannot conceive that this doctor in Mexico City has stronger magnets or that he can use magnetic fields of any strength for succesful treatment of anything. Nor can I imagine what that doctor means by a "polarizing" solution of insulin, etc,... or how it could help. Polarizing what, exactly? During an MRI it is true that the strong magnetic fields align (one could say polarize) the hydrogen atoms in water molecules present in the body with the applied field and that, simplifying it, the magnetic energy consumed in doing this is measured and ultimately transformed into a diagnostic image. No "polarizing solution" is needed or can affect what happens. When the magnetic field is turned off, everything goes back to the way it was before.
     The same technique is used to determine chemical structure, except it is called NMRI, for Nuclear Magnetic Resonance Imaging, because the magnetism really aligns the nucleus of an atom. However, the term "nuclear" scared people who thought it had to do with nuclear energy, which it doesn't, so NMRI became MRI for better public relations. I really think this "doctor" is scamming people, whether he knows it or not. I wish I could be more optimistic about this for you but I can't. It probably would not hurt you, except in your wallet. Best of luck. HKnoth@magpage.com


Tom S, July 23, 2000 - Hi, I saw a story about how a particular antibiotic medication screwed up the middle ear of a woman who had a bad infection of the toe. The woman - a flight attendant - had to give up her job and can barely stand up straight because she is constantly dizzy. That got me to thinking that perhaps, just perhaps, some of the medications we are consuming in vast quantities as stable CHF patients may well being doing funny things to our inner ears causing that annoying "dizziness" some of us suffer from. Who knows, maybe the drug companies do know, but aren't telling. bhigheart@hotmail.com


Jon, July 23, 2000 - Hi everyone, Tom's post jogged me into remembering the interest in Coreg reduction and any effects from it. My lightheadedness gets better about 10 days after each dose reduction. My migraines are coming back as the beta-blocker dose gets lower, though; bummer. So far, my brain is still foggy but then I am a long way from off Coreg right now. Jon.


Jeanette's July 23 reply to Rick M's July 22, 2000 - Hi everyone, Rick, That's kind of rude. It is her life and I am sure that she has looked hard into this study. We are here to help, support, direct and encourage. You could give her a little advice but don't bring her down. Laura, let me know how you do on this study. Good luck, Jeanette. jeanette1@93qmail.com


Jon, July 23, 2000 - Hi everyone, I'll step in since Jeanette was upset at Rick's comment. First, this is not the beginning of a thread. This is the first and last post in this thread about what gets posted. <g> I happen to know Rick pretty well and he wasn't trying to tear anyone down. He was using his own brand of humor to get his point across. The tricky thing about text-only communication is that everyone - and I mean everyone - tends to read what they want to see into the other person's message. After more than 4 years of webmastering message boards, I am a true expert in this, believe me - yet I still have the same tendency myself!
     There are no clues such as tone of voice, body language, or facial expressions to help clarify the real intent behind this or that set of words. So everyone should try to read things in their best possible light (in Rick's case, think of him saying the same thing in person with a sly grin and a wink of the eye), since often that is exactly how they were intended, no matter how poorly expressed the thoughts may seem to you. Some people have a gruff way of expressing themselves, while others tread so carefully it's also an extreme, and all points in between. People often think I'm mad when I am just being my usual incredibly blunt, direct self. People communicate differently, so don't jump to conclusions.
     As for bringing people down, that's not relevant in this case. If we don't answer honestly about treatments we think are useless, what's the point of people asking what we think?
     And hey! Don't forget about the caregivers and loved ones forum, guys! Jon.


Jack's July 23 reply to Laura's July 21, 2000 - Hello Laura, Actually Doctor Pallares is only claiming that he founded the process. It was actually started back in the sixties by a guy named Gerson and like many discredited and disproven "treatments" has worked it's way into Mexico and other countries where the value of the dollar is much more important than the life of the patient. But hey! It's your life and your money. Jack. maddjak@hotmail.com


Jack's July 23 reply to Walter K's July 23, 2000 - Hiya Walter, I must beg to differ with you. I have been the recipient of 4 MRIs and I must tell you that the polarizing effect is, if not permanent, a very lasting effect. Every time I float in a swimming pool my body turns so that my head is pointing to the North in less than a minute. I even have problems in the bathtub because it points east and west and my body keeps jamming itself against the sides. However I wonder how injecting salt, insulin and potassium cause the body to produce glucose, salt and phosphorus, which are the components of ATP? maddjak@hotmail.com


Walter K, July 23, 2000 - Hi, Just a short PS to my original reply to Laura. I ended by saying it probably couldn't hurt except in the wallet. Thinking it over, I believe insulin can hurt people who don't need it. I don't know if Laura needs insulin for other reasons or not but if not, I would strongly recommend she check this point, at least, with her regular doctor. As I said earlier, I am not an MD. HKnoth@magpage.com


Karen K's July 23 reply to Donna Z's July 23, 2000 - Hi Donna, It is the pits trying to find food in restaurants that stays within the low-salt guidelines. I love breakfast out but of course that's a no-no when they offer eggs with bacon or sausage.Yum! I stick with cereal or french toast for breakfast. As for the other meals, salads are my mainstay. It is true that many of the chain restaurants have their food delivered already seasoned, already marinated. I'm not sure how much help this is but I love salads anyway and then usually there is a fruit plate of some sort that could possibly pass as a meal. Karen. karenk@machlink.com


Maggie S' July 23 reply to Donna Z's July 23, 2000 - Hello everyone and Donna Z, I am having the same problem that you are: eating out when going to dog shows and at other times. I stopped showing my dogs for a year because I kept getting into trouble. I have just this summer started to show again, gradually. I recently went to Duluth to a 3-day show, and was very careful ordering unseasoned food and salads. I also took extra Lasix and managed to do ok but sometimes the food is still salty. In September my husband wants to go to a reunion and we would be out of town about 5 or 6 days, which concerns me. Good luck, and I hope everyone had a good weekend. Maggie S. marjac@pro-ns.com


Beverly C, July 24, 2000 - Hi, Has Coreg put weight on a lot of people? Do very many people lose weight while on this medication? macmember@earthlink.net


Jon's July 24 reply to Beverly C's July 24, 2000 - Hi Beverly, Yes, Coreg gives a person a strong tendency toward gaining weight and increases blood sugar, so diabetics must be very watchful while taking it. You can lose weight while on Coreg but it isn't easy. I speak from personal experience. <g> Jon.


Tom S' July 24 reply to Donna Z's July 23, 2000 - Hi, Unless you are eating out every night of the week, I personally can't understand the harm in splurging for the few nights of the year you may eat out. Don't ever try to second guess what goes on in the kitchen of any restaurant. Chances are that if most of knew what really occurs back there, we would never eat at a restaurant again. My ex father-in-law ran 27 big name franchise hotels with restaurants and I was witness to some things in food preparation that made my hair stand on end. Of course, what qualifies as a restaurant today sure is a far cry from what I remember as a youth and young man. Even New York City has seen a wholesale decline of some of the best family-run restaurants in favor of the really awful chain restaurants such as Friday's or Applebees or anything that has "factory, warehouse or roadhouse" tacked onto it. bhigheart@hotmail.com


Jon's July 24 reply to Tom S' July 24, 2000 - Hi Tom, Donna specifically mentioned being out "on the road" for 2 consecutive days at the least, while attending dog shows. That's a total of at least 6 meals, probably more, which is too many to eat high-sodium in a row even for someone with mild CHF. That's not the same as going out one night for a special occasion and splurging on the sodium. Jon.


John's July 24 reply to Donna Z's July 23, 2000 - Hi Donna, There are health food restaunts in most large and medium sized cities. Have you tried to locate any of these in your travels? a_lenny6@hotmail.com


Jeff Mecham, July 24, 2000 - Hi, I have a question I hope someone can help me with. I have an LVAD heart pump and I have started to have a lot of bad headaches that Tylenol can't touch. I never used to have headaches very often. I am starting to get concerned because the headache that I have right now I have had all day and I don't recall ever having one this bad for this long. I had a friend on an LVAD who just had a mild stroke the other day and they said that it is one of the risks of the LVAD because of the blood pooling in the pump and possibly causing clots to form. I am asking here because this seems to be the only web site I know that is even familiar with the LVAD. I hope that I can meet a few more LVAD packers to share this sort of info with. It seems like there are not that many of us out here. Thanks for your time. Jeff Mecham. iowajeff29@aol.com


Walter K's July 24 reply to Jack's July 23, 2000 - Hi Jack, Some people don't recognize great opportunities when they see them. Get yourself an outdoor circular hot tub - don't turn on the heat; could be bad for your heart. Then not only would you avoid hitting the sides of your bathtub, but you could charge money to have people see the "world's only human floating compass!" Walter. HKnoth@magpage.com
 
Jon's note: Jack has always had a magnetic personality


Barb L S, July 24, 2000 - Hello Jon and everyone, I have a question about allergy medications. I had taken Tylenol Allergy Sinus, an OTC (over the counter) medication for its obvious name. Anyway, I have had a lot of palpitations and sleeplessness and was wondering if this is something that's not good to take. I had looked for the precautions and had seen nothing that would warrent my not taking it.
     Also, I have a subject I have not wanted to confront but need to face now. I have been feeling a little on the downside and am also wondering if anyone has felt this way or even depressed for any period of time. I have prided myself on not feeling depressed or down and now can't seem to shake this. If anyone could tell me why a 39 year old mom of a 2 year old and an 18 year old with CHF has finally given into this after almost 3 years; why I have temporarily given up this fight and what I can do to fight it, it would be appreciated by my family and myself so very much. God bless, Barb. Musicalheart@hotmail.com


Jon's July 24 reply to Barb L S' July 24, 2000 - Howdy-doo Barb, Any medication that "decongests" should not be taken by CHFers. Most cold and allergy medications - whether over the counter or prescription - do contain some type of decongestant. They are not required to put a warning on the label for this. We CHFers are very sensitive to substances that change our heart rate, and decongestants speed up your whole nervous system - that's how they speed up the body's natural decongesting system! Always ask your CHF doctor before taking any cold or allergy medication. If your doctor prescribes a med along these lines, double-check with the pharmacist; no kidding.
     Barb, what makes you think you've stopped "fighting?" It sounds to me like you just finally wore down some. <g> CHF has a way of wearing down our emotional strength as well as our physical strength, or else the 2 are inherently linked together to begin with. Most of us have experienced periods of "down time" when it just seems like too much effort to live, much less fulfill our various day to day responsibilities. Sound familiar? It passes, trust me. Share it with your fiancé and your oldest child. Don't hide from it, just know that you're tired and tired people are easily depressed.
     When I fall into that "mode" it is usually from me turning inward and focusing on myself. When I manage to turn outward again and focus on others - all those around me - I begin to pull out of it very quickly. Whether that helps you or not, I can't know. However, Jesus keeps me "up" and He'll do the same for you if you give yourself to Him. As for that 2 year old, I thought all moms of 2 year olds were depressed! ;-) Barb, maybe you've been fighting so long so hard that you need to lie back and let it depress you for a few days to work it out of your system, I just don't know. I do know that it will pass. Talk to us. Jon.


Rick M, July 24, 2000 - Hi Eaters, I don't know if the fact that I don't go to dog shows disqualifies me from commenting (you can't be too careful these days), but I share your pain on eating in resturants. If you could find a hotel/motel with a kitchenette (I know of one in Harrisonburg, Virginia.) you might be able to handle breakfast and lunch as if you were at home but dinner is a whole other thing. We tend to stay home for dinner except for Sunday night, when we go to a resturant that will prepare my meal from unseasoned and unmarinated ingredients. At first it was a trial, but now we have become such a fixture there that the waiters and chefs know exactly what I want and take pleasure in getting it right every time. Down here in Florida, our biggest problem is the hurricane season and forced evacuations, when eating is the least of our concerns. Who knows where or when that's going to happen? rearadml@iu.net


Darlene Allan, July 24, 2000 - Dear Jon, I want to thank you for adding me to your mailing list and for the privilege of reading and learning from this excellent site. I have not posted before but have read back to day one. To do this, I print the material out and take it to bed with me. I have been mostly bedridden for some time with many illnesses that complicate my class 4 DCM/CHF. My EF is 19% and I had one silent heart attack diagnosed December 4, 1998. I was in the ICU for 8 days and on a ward for 3 weeks; back in a month later for the same period of time with many more diagnoses. I could have skipped that part.
     I have been working on my bio and wanted to have that done and into you so you may understand a little more about what condition my condition is in. Heart-wise I seem to have improved. My EF is now 52%, but I feel worse. The leg pain conversation is of great interest to me. I have all my old files out because I knew I read back near the beginning that you fellows were discussing leg pain then, but hadn't hit the section yet. I have had severe pain with some redness and swelling in my lower legs and feet for 3 months now, and a low grade fever off and on for same. I have never had a problem with my legs before.
     Jon, I will do my best to get my bio in listing my meds so that will give you and others a better idea of what I am dealing with. I know there are others in the same tippy boat I am in, and have found better ways of coping. God is always present and He has seen me this far and that was no easy feat. I know He will be with me the rest of the way also. I do count my blessings when I see all the sick young mothers with little ones to raise. How on earth do they do this? I am 59 years old, married to a great guy, have 4 daughters and 12 grandchildren from 3 years of age to 19. I have been ill since a car accident in 1976 when I was 35 years old. Then, my children were growing up, with the yougest of the four girls being 9 years of age and that was hard on her.
     My hardest part was not having any sibling support from my family. I looked good, therefore I must have felt good, right? Wrong! This eventually tore my family apart and I am now trying to put it back together, but I still "look" good, except for an extra 40 lbs. But, heart failure is something they understand so if you have to have an illness, try to get one people can relate to and not some new thing just coming along. ;-)
     Sorry Jon, I do ramble, so I will take what I printed out today to bed now amongst so very many other papers and books and will sqeeze in along with them. If I am lucky, maybe I will find that piece of pie I thought I lost amongst the covers! <g> Thank you for taking the time to read this, Darlene. rollrock@zeuter.com


Barb L S' July 24 reply to Jon's July 24, 2000 - Hello Jon and everybody, Thank you for your words of encouragement. I'll choose your last suggestion. Maybe that's what I need to do: just lie back and let it run its course. I definitely haven't felt anything like this, not since I've been sick and that's been 3 years. I had started crying so much when I read your reply that I couldn't see straight, because someone had understood what I was attempting to convey, and so I called my fiancé at work and did talk with my daughter.
     I've been crying like a baby but it could be due to the "physical" side of things, plus I haven't really talked a lot in person, you know? I've talked lightly about things and have dealt with everything in a "light" way but here at home, I don't complain at all. There is just too much to even contemplate thinking about myself and I feel that now it's catching up with me. My fiancé Herb and my daughter Shanon suggested that I stop attempting - temporarily - to learn all about this disease, come here at least once a day and do other things that I enjoy. That's just it. I used to bubble over with this energy and fell in love with everything I had seen and was grateful for every day, even up until a couple of months ago. Now, I don't know about anything, and they definitely do not know how I've felt up until today. I do know this much: when others felt down, I told them to borrow whatever they needed, even if it was from me, until they had their own. I'm going to do the same, from anyone and everyone.
     Thanks Jon, for the advice. It fits how I am feeling and thank you also for that allergy med info. That stuff made me feel terrible. God bless, Barb. Musicalheart@hotmail.com


Donna Z, July 24, 2000 - Hi All, Thank you all for your suggestions. Here are the problems: When people show dogs, you never know where the show will be. Most are out in the country rather than in cities. Breakfast I can usually handle by finding a small store that carries yogurt. Sometimes I can get away with a burger at lunch or a fruit salad or salad but I always ask if the food is pre-seasoned. Then there is dinner, and as I found out, that's not as simple as we think. Now there are a few high quality restaurants that will accomodate me but when I'm away for a few days, my choices are slimmer. As to winging it, I asked my CHF specialist and she told me one big meal could put me back into CHF. I would rather not take that chance, especially if I'm away from home. Sometimes these shows are out in the boonies, so a quality hospital might be a problem, and I don't want to put myself back into CHF again; it's just not worth it. The best thing I've found so far has been packing as much food as I can without it spoiling, and some restaurants will go out of their way to help me, especially if you tell them why it is so important that you don't have salt. dzak@worldnet.att.net


Donna Z's July 24 reply to Laura's July 22, 2000 - Hi Laura, I was to see my CHF/transplant doctor today and asked her if she had ever heard about the treatment of "sodi water" and magnets. She said it was useless. I was going to ask her if it could be dangerous to you but she got interrupted and then we changed subjects. I hope I didn't offend you in my first post but I care way more about you not putting your life in jeopardy than about offending you. If you remember a few years back, some doctors in Mexico were selling drugs to cancer patients that were totally useless and these poor people were not getting the proper care and put their lives in danger when they maybe would have gotten good care and a better quality of life elsewhere. Whatever you choose, I wish you the best, Donna. dzak@worldnet.att.net


Jon, July 22, 2000 - Hi everyone, I moved all the bios to jonsplace.org so if you cannot get to your bio, just go to the main Who's Who page and go from there, then make a new bookmark (favorite). Jon.


Bill C's July 24 reply to Jon's July 22, 2000 - Hi Jon, On the subject of Coreg and blood sugar, I started Coreg about 9 months ago and developed type 2 diabetes last month. I have been borderline diabetic for several years but Coreg put me over the edge. Since starting diabetic control I have noticed that the exhausted and heavy-chested feelings occur when my blood sugar rises above 160. The diabetic clinic explained this today when demonstrating a tube of water (representing blood with glucose level of 100) with beads in it and how freely they flowed. Take the same tube and make the liquid equal to a blood glucose level of 200 and the beads become very sluggish due to the sticky glucose. Now put this into a heart only pumping at half capacity and I understand why I feel so rotten at times. Just a thought for Coreg users to have a HbA1c blood glucose test performed. My diabetes was not found until this test was done. Jon, thank you very much for your web site. This site has been of great comfort and information. It's nice to know that I'm not alone in this fight. Bill C. bcraw50049@aol.com


Donna Z's July 24 reply to Barbara L S' July 24, 2000 - Hi Barbara, Ask your doctor about Zyrtec for allergies. I have IDCM/CHF and I use Zytrec every day for allergies. I would be very careful about taking over the counter allergy meds and or cold meds without consulting your doctor. Donna. dzak@worldnet.att.net


Ron, July 25, 2000 - Hi Jon, There is an article about the use of NSAIDs that should be of interest to the people here, called "Could NSAID Use Lead to Heart failure?" As many as one in 5 hospital admissions for congestive heart failure (CHF) may be directly attributed to patients' recent use of nonsteroidal anti-inflammatory drugs (NSAIDs), suggest the findings of a study conducted in New South Wales, Australia. Ron. ronaldll@techinter.com


Sharon J W, July 25, 2000 - Hi everyone, Eating out was a problem for me long before I got heart trouble. I have severe food allergies and make it very clear to the server that I can die from certain ingredients, most notably sulfites (that includes wine in food!). When you mention that, the server really takes notes. Sometimes the cook even comes out to be sure he does things right. It wouldn't be a lie for any one of us to stress the consequences of a severe heart failure episode due to high sodium. I have pastas cooked without salt, served with olive oil, garlic and fresh lemon, unpreserved salad with fresh lemon, broiled fish, baked potato, steamed veggie platters, chicken baked with no seasonings (herbs are ok) and never, never have sauces on anything. I carry no-sodium bread (Trader Joe's) and several different no salt herb blends, along with shredded wheat or oatmeal and a hotpot to boil water.
     I've grown to love green tea (decaf) and carry that into the diner and ask for a pot of hot water (you pay for it). I'm not a dessert eater, so that's not a problem. Incidentally, most states don't allow burger meat to be seasoned and have great burger (no roll) and salad platters. Fresh fruit platters work if you aren't diabetic. The bottom line is to put a little fear in the kitchen - they don't want anyone dying on them - so your restaurant food comes out prepared well. Yes, I have been told, in 2 places, that they would rather not have me eat there. Oh well! delwill@gateway.net


Elaine, July 25, 2000 - Hi everyone, I just wanted to post and say thanks to those who e-mailed me after my last post about having been diagnosed with breast cancer on top of my DCM and CHF. I'm having a tough time with this and I just had to take a break from all things medical. I'm sort of in a holding pattern while my oncology doctor gets with my heart doctor to confer about to how we are going to go about all this surgery and whatever comes after. So I decided to just take these days and to just let it all go while I could. My mind can only carry so much, but I did not want to let y'all's concern go unacknowleged and I will be back in a few days. Hopefully, I can build some strength of mind as well as body before I go into this surgery. Thanks to all for prayers and positive thoughts sent this way. I know the Lord will somehow lead me through! My prayers are with all of you too. Elaine. heartfelt16@netscape.net


Donna Z, July 25, 2000 - Hello everyone, I had an appointment with my CHF specialist and while I was there I told her about the support group I will be starting in October with the help of the nurse practitioner from my regular cardiologist's office, with the funding and support of the SmithKline drug company. She then told me about a web site that you all might be interested in viewing. Here is the address: www.mychf.com. It is run by a nurse who either works or has worked for my CHF specialist. Donna. dzak@worldnet.att.net


Guy's July 25 reply to Laura's July 22, 2000 - Dear Laura, If you are prepared to travel to Mexico, may I suggest you stop over in Palo Alto, California? There is a research facility there that is somewhat more credable. Stanford saved my life. Maybe the doctors there could advise you on this matter since they are on the cutting edge of new treatments and techniques. I do wish you the very best. Good luck, Guy. Aadroit1@aol.com


Frank S' July 26 reply to Guy's July 25, 2000 - Hi Guy, Does the research center have a name, and what are its areas of expertise? Do they have a web page within the Stanford web site? Later, Frank Smith. marquasmith@lycos.com


Lydia Moore, July 26, 2000 - Dear Jon, From what I have read, I understand that you are decreasing your Coreg or getting off of it. Could you explain why? I have been having a very hard time on it and was wondering if you experienced the same thing. I would really appreciate the input as I am trying to make a wise decision on what to do. Thank you so much and God bless, Lydia. Flanders66288@cs.com


Jon's July 26 reply to Lydia Moore's July 26, 2000 - Hi Lydia, Read this post. Jon.


Ranelle, July 26, 2000 - Hello to everyone, I have several questions for those of you who are taking Taurine. How much do you take? Do you take it more than once a day or all at the same time? Are you also taking CoQ10? If so, how much? Have you changed the amount of CoQ10 due to the addition of taurine? Thanks for the information, and thanks Jon, for the web site! Ranelle. rcdrb@aol.com


Tom S, July 26, 2000 - Well folks, I think I just learned a hard lesson and it took awhile for it to sink in. For want of a better term, I'll call it bug-spray poisoning. Prior to my CHF onset, I could pretty well tolerate almost any kind of chemical that was capable of killing man or beast. I found that out when I helped an exterminator friend of mine out of a job backlog. In the past 2 years I've had some pretty serious bouts with fatigue, diarrhea, a metallic taste in my mouth, low-grade pains in all extremities, dizziness, and sometimes a queazy feeling in my stomach. After trying to narrow the cause down, I have discovered that the onset varies with the use and amout of use, of over the counter ant and roach sprays, and sometimes even flying insect sprays. The reaction is particularly bad if I inadvertantly walk barefoot on a floor after it has been sprayed. It took awhile for me to associate the sprays with the physical reactions but I am pretty certain that the sprays are the cause. It presents a big problem in our house because ever since I got ill we had to drop the monthly exterminator service, and in the South, that is a pretty tough thing to do. We have had some luck with killing roaches by using sticky traps. The name brand bait-type poisons have proven to be absolutely useless on a roach infestation that we have had since visitng northern relatives introduced them into our house nearly 4 years ago. If anybody has any suggestions on nonpoisonous methods of killing mass quantities of brown roaches, it would be appreciated if you would pass them along. bhigheart@hotmail.com


Jon, July 26, 2000 - Hi everyone, I have a feeling that my e-mail at my new web host is screwed up. If anyone did not receive a support group mailing list mailing from me regarding Ruthie A yesterday, please let me know by e-mail. Judie, if you did not receive a message from me yesterday, please let me know.
     Gus was kind enough to point out that my "new" pages were a total flop in Netscape, and I think I have that fixed now. Please, please, please, if anyone sees one of my pages that looks somehow funky or screwed up, tell me! I really have no way to run every operating system and every brand and version of browser to see what my pages look like on everyone's systems. Also, I need people to report dead or incorrect links on my pages to me so I can fix them. If a redirect page pops up and you wind up at the right place, that's okay. It just means I haven't got that far yet. <g> But if it's plain broke, I need to know. ;-) Jon.


Rick M's July 26 reply to Tom S' July 26, 2000 - Well Tom, As a Florida resident for 25 years, I qualify as an expert on bug control. I have a magic formula for ant problems: Boric acid and honey with enough hot water to dissolve the boric acid. But when it comes to "Palmetto Bugs," an old shoe seems to work best. Give one to each member of your household and tell them to take no prisoners. As a first step, I would suggest that you eliminate "visiting northern relatives" as they are a common problem all over the state. <g> rearadml@iu.net
 
Jon's note: You'll need a really big shoe for the relatives ;-)


Jon, July 27, 2000 - Hi everyone, I have no idea what is wrong with my e-mail but it's shot craps completely. My web host says there is no problem but I'm not even getting e-mails I address to myself, so I know it's bad. Thanks for your patience. I will be remailing some mailing list stuff today. If you don't get it sometime today, please let me know (again). If you do get it, please let me know if there was a number 3 at the very bottom of the message or not. That will tell me which server sent it. The number 3 would be under my signature. Thanks, Jon.


Mary H, July 27, 2000 - Hey Y'all, I have been missing this wonderful site of Jon's. Our computer monitor stopped working and it took several days for Dell to send another. Anyway, I have spent quite a while catching up on everyone. I now have a question: Is anyone else taking Mavik or Zebeta? I haven't heard of anyone else who takes these meds. I take one in morning and one at night. I know their purpose or function but haven't heard of anyone else taking them. The Zebeta is the one that makes me so tired and lifeless. My doc doesn't want to change it though because it does its job of making my ticker beat stronger. Is anyone else on one or both of these? M123_@excite.com
 
Jon's note: To everyone - Zebeta is bisoprolol and Mavik is trandolapril


Ben B, July 27, 2000 - Hi, I remember a fellow named Robert Farish who used to post here with some nice poems and such. I was wondering if he was still around. I wish people would post every so often to let others know how they are doing. I think a lot of people start feeling better and drop off until something bad happens. Then of course, something bad could happen to make them stop posting. I would feel hesitant e-mailing somebody out of the blue who hadn't posted for awhile. bdbrinkman@juno.com


Darlene Allan's July 27 reply to Barb L S' July 24, 2000 - Hi there Barb, I am really sorry you are having such a bad time right now. Depression is very hard to deal with, I know. I have just come out of my shell from one of the longest ones I have had in years. I totally agree with Jon's advice on turning outward. We can really bury ourselves deep and it all seems black and we wonder if there actually is a light at the end of the tunnel, but there always is. Keep thinking "this too shall pass." Depression sometimes comes with chronic illness and you have done marvelously to keep as good-spirited as you have, so don't get down on yourself. You are doing your best. Look for something funny or delightful each day. That shouldn't be hard with a 2 year old. Try and do one little thing for someone else. Believe you me, this is a tall request when in a depression but it will lift. Also pray for guidance and it will come through the funniest ways sometimes but it comes. God bless for a speedy recovery, Darlene A. rollrock@zeuter.com


Ginger, July 27, 2000 - Hi, "Palmetto Bugs" sometimes seem as big and ugly as the relatives. <g> They truly are horrible bugs. I also have glue traps around but I also have Echol's roach tablets hidden around and they work. The only time we get bothered much anymore by either brown bug is when it rains a lot and doesn't have time to drain off. So guys, keep the shoes handy but try the roach pills. I am slow answering e-mails lately, so those I owe, I will catch up to you. My oldest son busted his knee and is staying with me to recoup. The older they are, the harder they are to take care of. ;-) Stay well, y'all. Hugs and prayers, Ginger. angelgin@bellsouth.net


Tom S, July 27, 2000 - Hi, Thanks for all the kind responses to my inquiry about "bug" and particularly roach eradication in my southern home. I'm familiar with the boric acid treatment and tried that in cabinets and under the refrigerator but had limited success with it. As far as arming everbody with a shoe, I find that bare feet are much more effective in squishing the rascals if you are fast enough to catch them. I learned the squishing technique on Palmetto bugs, when I lived in Florida before exterminators were prevalent; Our lanai would be blackened with the critters that could carry a small child on their back. One writer suggested an ant tonic of boric acid, hot water and honey, but no specific instructions as to how to mix and lay out this concoction. I had a minor problem with sugar ants but find that if I see a "scout" and kill it, generally no others will follow. If I don't, then I have a wholesale invasion.
     They won't touch unprocessed sugar but anything with sugar content that has been diluted in some fashion is fair content. One time I opened a flat of a dozen Krispy Kreme raised honey donuts and every donut in the box was black with the pests. I actually threw the box in the fire place,doused it with lighter fluid and burned it ants and all. Please, I don't want to hear from some ants rights' group accusing me of anticide and destroying part of the natural food chain. If ants were filet mignon, their existence on earth would be short indeed. My house, my rules, they are in my house so they go by my rules --Sqqqqquuuuuuisssssh! bhigheart@hotmail.com


Carol W's July 27 reply to Barb L S' July 24, 2000 - Hi Barb, Everyone has been giving you good advice about depression. Perhaps because we have all had it at some time, whether we want to admit it or not. It is part of accepting who we are now and missing who we used to be and want to be. So depression is not necessarily a bad thing. It is ok to accept it and deal with it. Talking with your loved ones was excellent. Talk with them some more. Let them know what is going on and that you love them. Also, I have found the best way for me to get out of depression is to wallow in it. Tell yourself that you will be just as depressed and misserable as you feel like for the next 48 hours. Let yourself feel really depressed, really sorry for yourself. Let yourself feel all the feelings. At the end of the 48 hours, tell yourself that it is over and get on with the rest of your life. Maybe what I am trying to say is don't just try to fight it off. Deal with it and then let it go. Best wishes to you, your family, and everyone of us who is depressed today, Carol W. cabwojo@banet.net


Rick M, July 27, 2000 - Hi, I've been hearing so many questionable things about Coreg lately, that I thought I would put in a good word to my fellow CHFers. Save the empty Coreg containers, as they make the perfect containers for "Rick M's Magic Ant Potion:"

  1. Take a spoonful of Boric Acid Powder and mix it with a little hot water until it turns to a thin paste
  2. Add over-age honey which has turned dark since you can't eat as much as you used to, and mix well until all traces of the boric acid are gone
  3. Decant into the Coreg container and cap, tightly
  4. Store in cool, dark place until you spot the ant scout. You can tell him by his cute little uniform
  5. Unscrew the cap and drip a few drops of the potion in front of the scout
  6. The scout will taste the potion, leap high in the air and head for the column of foraging ants, who will flock to the bait and start consuming it
  7. They will then head back to the queen and show off how great they are at their job by serving her a lethal dose, while smiling and wagging their tails (tail wagging is optional)

     Rick. rearadml@iu.net


John Len's July 28 reply to Tom S' July 27, 2000 - Hi Tom. How about some of the new birth control roach traps on the market? The little critters eat their fill but track some of it back to the nest and eureka, the girl roaches eat it and thereafter give the boy roaches that look and say no way whosey. Eureka, no more kiddie roaches! The traps worked well for me a few years ago. a_lenny6@hotmail.com


Tom S' July 28 reply to Rick M's July 27, 2000 - Hi Rick, Thanks for the boric acid solution to my ant problem. What do I do if I miss the scout?! <g> What if they have scouts that are looking out for me? If I fall asleep waiting for him, I might be back to part V with an unscrewed bottle and not a scout in site. I guess me, the wife and the 5 kids could squash roaches with our shoes to keep awake. That should be enough racket to drive off any self respecting ant to begin with. bhigheart@hotmail.com


Robin Lynn, July 28, 2000 - Hi Tom, I also live in the south, in Mississippi. I can't figure for the life of me why I don't have critters running around in here! <g> I have friends who never leave a dirty dish or a drop of water around the sink and have them. On the other hand, I am sometimes too worn out to do my dishes after preparing a meal and getting my daughters bathed and down for the night so I leave the dishes till morning or afternoon, whenever I can get to them, and still no roaches. My sister, who is the cleanest person I know (she actually irons her sheets and night gowns), had a serious roach problem. She used Combat roach bait - lots of them - and I was impressed with the results.
     I don't know what a palmetto bug is. I did have these bugs in my house that I call water bugs (water roaches). They resemble an armadillo with a ribbed back. I discovered that we had a leaking drain in the wall and when we fixed it, no more bugs. Good luck with that. I hate bugs! Ewwwwwww!
     Barb, I know the depression you are faced with now. I went through stages after I learned of my illness. Everyone is different in the way they react to things. I went through denial and anger, then I started to withdraw. I soon found myself in a depression that I didn't know was there! I learned that especially heart patients, depression is common. I suppose that's true with all people who are diagnosed with a major illness. Subconciously we have an idea of what our lives will be like and we are pretty much in control of our destiny. Then we find out that our life span could possibly be shortened and we no longer have the control we thought we had. What you and many of us are suffering with is a real life loss. A loss is, in fact, a death of some kind or another, and you must allow yourself to grieve. Only you will know when you are ready to pull yourself up and what it will take to get yourself feeling better.
     I warn you to be on the watch for your "bottom" and don't allow yourself to go there. The depression will eventually start to really bother you and then you must do something about it. You will always grieve over the loss you have suffered but you will learn how to cope with it. You have already made the biggest step toward feeling better: recognizing and admitting that you are depressed. The outreach approach works for me also. It does help me to help someone in need, but your way out of depression may be a hobby or just making up stories for your child. Whatever it is, I wish you the best and hope that you will be relieved of this burden soon. Blessings and prayers to all with love, Robin Lynn. heartful99@hotmail.com


Jon, July 28, 2000 - Hi everyone, I am going to take the rest of today off and work on my e-mail problem until it is fixed or until I just cannot think of anything else to try. To all of you who think I am ignoring you, the odds are that I have replied to every single one of your messages but my replies are lost out there in e-space somewhere. I reply to all messages except trolls as quickly as humanly possible, as all the old timers here know. I am researching this, working with my web host - who is being incredibly patient and helpful - and will be destroying my e-mail client tonight and rebuilding it to see if I can shake loose the gremlins. Wish me luck, Jon.


Ginger, July 28, 2000 - Hi, On the subject of people who have not posted for awhile, has anyone heard from Freddie B? He was in the hospital awaiting transplant. The last time he didn't post for a long time and I wrote him, he answered it but this time he hasn't. Since I changed e-mail address, I wondered if maybe someone else has heard from him. Prayers and hugs, Ginger. angelgin@bellsouth.net


Joe S' July 28 reply to Ginger's July 27, 2000 - Hi Ginger, Bugs? What bugs? Another great advantage in living in a high dry climate is we have no fleas, ticks, cockroaches and this year virtually no other bugs. In fact, there are so few that everyone is beginning to wonder what is going on. All the honey bees were killled by an unseasonal freeze and the only bugs left are small bumblebees. Oh well. I have a big question for anyone. A few weeks ago I completely ran out of potassium and couldn't drive into town. Within days, I started sweating like mad. What is the connection here? As soon as I got some more, the sweating stopped. Joe S. jes@stevensonlighting.com


Jeanette, July 28, 2000 - Hi Jon, I haven't received anything from you for a long time. I am sorry for your e-mail problems and hope they are sorted out. If there is anything I can do, let me know. I'm praying for you and your family that this doesn't totally stress you out. If I recieve an e-mail from you today, I will let you know by posting here again. Jeanette. jeanette1@93qmail.com


Donna Z, July 28, 2000 - Hi All, Well, I need some advice. What do you all use to control your blood sugar? I have been taking Glucatrol XL 5mg once a day but all of a sudden my blood sugars have gone way up. I saw my PCF and he wanted to switch me to Glucophage but my transplant specialist does not like it. I was just wandering what everyone who has diabetes is using. I am planning one seeing a endocrinologist to hopefully get me back on the straight and narrow. Is anyone using Avandia? Having any problems? Thanks, Donna. dzak@worldnet.att.net


Mary H's July 28 reply to Jon's July 28, 2000 - Hi Jon, Relax - it's not a computer problem or a host problem. Y'all know it's those bugs and critters with far too many legs actually doing the damage to Jon's work. Just talking about the roaches ticked them off and they are executing a counterattack on Jon's web site. So remember: if they can create turmoil in Jon's world (the man of peace and wisdom) just think what they could do to the rest of us! M123_@excite.com


Jon's July 28 reply to Mary H's July 28, 2000 - Ya mean it's not gremlins?! <g> Actually, our female Rottweiler loves to play with bugs. Of course, she's not too dainty about it and they wind up on a slab in the insect morgue but it certainly controls the bug population around here. They are both expert fly catchers, snatching them out of the air and eating them. Kind of reminds me of a Yorkshire terrier I once had - all 7 pounds of him. He used to sit out on our side porch in the summer and around dusk, we'd hear what sounded like a person eating potato chips outside. The little rascal loved June bugs! ;-) Jon.


Laurie, July 28, 2000 - Hello Everyone, I am very new to this whole program, including my CHF, cardiomyopathy, CAD, and pulmonary hypertension. I still do not understood what the elevated wedge is. I know about the refraction number, mine is 20%, but not the wedge. My other question is to all of you out there that believe their CHF and other heart problems are outcomes of side effects from chemo and radiation. I had a Ewings-Rabdomyo Sarcoma in 1979, had my upper left lung removed and was just recently (June) diagnosed with all these great heart problems. The thing that throws me off and has me not accepting it all is that I feel so much better than before I went into the hospital. My breathing is fine right now. I get a little tired but have always fought that. The only thing I get is little pinchy feelings in my chest and that is not always. I am just really curious about time frames for other cancer patients; how long after the end of their treatments. Anyone able to answer the wedge question I would also appreciate. I try and remember all my questions for the doctor but I get impatient in between visits and then always have so much to ask. Thanks everyone, and nice to meet you all! Sarg0911@aol.com


Jon's July 28 reply to Laurie's July 28, 2000 - Hi Laurie, Welcome to Jon's Place. Wedge pressure refers to "pulmonary capillary wedge pressure." The pressure in the blood vessels of your lungs partially depends on your heart function, since the lungs and heart are so inter-related. If the pressure in the small blood vessels in your lungs goes up, it can be a warning sign of poor heart function. It's a pretty reliable indicator and many heart failure trials use lowered PCWP to prove their treatment is effective in relieving CHF.
     Please be very careful about the "I feel good so I'm probably not too sick" thing. It's really easy to fall into that thought, but if your meds were stopped and you went to a regular diet, you might be in bad shape pretty quickly. Take your CHF seriously even if you have very few or even no symptoms now. It can rear up and hammer you if you don't keep a handle on it. However, with that said, enjoy feeling good! ;-). Jon.


Frank Smith's July 28 reply to Robin Lynn's July 28, 2000 - Hi, People who become seriously ill may feel depressed. Some symptoms of a truly serious depression are being unable to get out of bed, crying a lot, suddenly having an angry attitude toward everyone, etc... If a depression lasts more than a few weeks, professional help is indicated. A psychiatrist can also prescribe drugs to help, if necessary. Many people do not want to get help for a "mental problem" but sometimes it's just that their neurotransmitters are out of whack, and may be put back in balance by anti-depressant drugs. Later, Frank Smith. marquasmith@lycos.com


Rosemary, July 28, 2000 - Hi, This is my first post. I want to comment on depression. Depression is common in any real loss and a certain amount of grieving is to be expected, as Robin said. There have been many good comments in recent posts about dealing with this kind of depression. What I want to speak about is depression that doesn't go away after a reasonable length of time. Depression may involve neurotransmitters in the brain to some degree, and a major illness can affect those chemicals. Self-insight and self-intervention may not work if this balance is really messed up, because the mental faculties ordinarily used in such self-evaluation are broken.
     In my situation, I was diagnosed with bipolar disorder several years before my CHF developed. I had struggled for a long time before seeking help because I felt that as a Christian I should be able to shake this kind of thing through spiritual means. I had to face the fact that my brain is part of my physical body, and any part of the body is subject to disorder. I did seek help and was already on medication that leveled out the highs and lows. Otherwise, when the CHF and diabetes showed up, I might have experienced an emotional tailspin that wouldn't quit. Robin warned about not letting oneself hit total bottom, but one may need professional aid to avoid bottoming out or treat it if it has already happened. I don't want to make the subject unduly complicated but these are some real possibilities to consider if depression just won't go away. Wishing you all God's blessings, Rosemary. freemano@southwind.net


Ernest D, July 29, 2000 - Hi, In regards to Coreg, I have been on it for 3 years at a dose of 12.5mg twice a day. Every time the doctor increases it to 25mg twice a day I have too many bad symptoms and the dose is dropped back. At 12.5mgs I have shown improvement without the worst side effects. Good luck, Ernest D. xerez@worldnet.att.net


David, July 29, 2000 - Hi, I first started going to the doctor in August of 1997 after I injured my back on my job. In addition to chronic back pain, I was diagnosed with COPD (Chronic Obstructive Pulmonary Disease), high blood pressure, an enlarged heart, chest pain, chronic bronchitis and anxiety. In July of 1998, I was hospitalized for 4 days for COPD and heart trouble. Because I felt extremely tired all the time, I never went back to my old job. In July of 1999, my bills had gotten so far behind that I attempted to work a couple of days a week cleaning an office (light duty) in order to provide some help to my wife of 22 years and our 6 daughters and 2 grandkids who all still live at home with me. Well, that didn't work out too well because in order to do that, I was not taking my medications because of the side affects. I ended up even sicker and in the hospital again. Finally I resigned after a few months.
     I applied for Social Security Disability and SSI in December of 1999 and was turned down twice. I continued to feel ill and so tired, but my doctor kept telling me that if I would stick with him, he would heal me. My feet, ankles and abdomen had swollen so large that I could barely walk and I had a hard time buttoning my pants. That's when I decided to change doctors. My new doctor finially referred me to a heart specialist and a kidney specialist. On my very first visit to the cardioligist in June of 2000, he admitted me to the hospital for what was supposed to be only a few hours for a cardiac cath and I ended up staying 6 days. The diagnoses were dilated cardiomyopathy and CHF.
     While in the hospital, I applied for a hearing before an administrative law judge.This time my heart doctor had SSA/SSI send the papers to him and today, SSA called me and said that they received the paperwork from my doctor today. I had also called my Congressman and asked him to help me expedite my claim. I received a call from his office yesterday to inform me that he has contacted the SSA on my behalf and asked them to expedite my claim. My friend at the SSA office told me that there is a way to expedite my claim even faster since the cardioligist sent them the paperwork after the reconsideration but before the ALJ hearing. Does anyone know what that's about?
     My daily meds are 120mg Cardizem, 40mg Isosrbide, 50mg hydralazine 50mg, 50mg amitriptyline, 0.2mg Clonidine, 150mg Ranitidine, 0.1mg Synthroid, 5mg hydrocodone, 10mg metoclpramide, 40mg furosemide, 400mg Uniphyl, one mg Prazosin, 50mg Ultram, 200mg Celebrex, Atrovent inhaler, 500mg Amoxil, 500mg Metronidazole, Guaifenesin DM, 10 mEQ potassium, 20mg Demadex, 600mg Motrin and Lortab 5. In reading the SSA listings of impairments, cardiomyopathy is on the list. Will that get me help any faster? I was also told that they will have to determine whether or not my illness began at the time I said on the application, which is August of 1997, or from the time that my cardiomyopathy and CHF were diagnosed in June of 2000, or is the back time decided from the date I applied for SSA/SSI benefits in December of 1999? Can anyone tell me anything about this and my chances of being approved before my case gets to an administrative law judge. Thanks. daviditucker@mailcity.com


Jon's July 29 reply to David's July 29, 2000 - Hi David, Welcome to Jon's Place. I'll leave SSD comments to those who have been throught it more recently. I do want to say that if I were you, I'd be looking form a new primary care physician. Your meds are a mess, with some meds being mixed that really should not be mixed. Jon.


Tom S' July 29 reply to Donna Z's July 28, 2000 - Hi Donna, I am currently diagnosed as a type 2 diabetic. Like you, I am on a prescribed daily dose of 5mg Glucatrol. My sugar levels have fluctuated from a scary low of 22 to a moderate high of 287. I have pretty well learned to judge the sugar level in my body, and generally can tell if it is high or low just by the way I feel.
     Gee, what a fantastic response to my bug problem post! It sure carried us far afield from the CHF thingy but perhaps a digression is needed from time to time. We went out and bought two large one pound spray bottles of Boric Acid. They cost $1.99 at the Food Lion grocery store. I am in the middle of a great anticide experiment. I dissolved a bit of the Boric Acid powder in hot water and added enough sugar to make a syrup. As of this writing, the ants are circling the little puddles of the concoction that I put out on the concrete railing of my porch. So far they are lapping it up like it was pure gold. Hopefully I will see some results in the next day or two. Later on today, my wife and I are going to clear out the cabinets and drawers and give them all a good dusting with the Boric Acid. I will keep you fine folks appraised of the results. Thanks again. bhigheart@hotmail.com


Christy P, July 29, 2000 - Hi, I've got an odd question for you all. Does anyone else spend their days yawning? I'm no longer constantly short of breath but whenever I exercise, I start to yawn. I'm the only one I know who will be walking on a treadmill and yawning the whole time. I figure it's my body's trigger to get more oxygen but I've never heard anyone else mention it. I don't consider this a problem but I am curious to see if others spend most of the day with their mouths covered with their hands. <g> breezip@hotmail.coms


Doug K's July 29 reply to Christy P's July 29, 2000 - Hi Christy, Thank you, thank you, thank you! I thought I was the only one who constantly is yawning and fighting off the urge to sleep. It is difficult at times, like at work when I just can't take a nap! I don't have to be exercising for it to happen, hence my nickname of Sleepy. Please don't go to the other dwarves' names even though some of them might fit, ok? ;-) I had sleep apnea testing and it showed that I do have excessive daytime sleepiness. Thanks for pointing it out, & the best to you. Maybe if I had a few of those bugs (from the other thread) running around, I wouldn't be so quick to fall asleep, but I think I would rather be sleepy, thank you. <g> dgknuth@earthlink.net


Barry Weiner, July 29, 2000 - Hi, I heard that Dr. Harold Philips from St. Luke's Roosevelt Hospital in New York found that testosterone benefits CHF patients. Have you seen this data, or any like it? Barry Weiner.arete6@concentric.net


Bill D's July 29 reply to Ernest D's July 29, 2000 - Hi Ernie, A Nurse Practioner told me, "If you take half the dose of Coreg, you get 80% of the benefits." So it would seem your 25mg a day is great. Bill D. billdog@gate.net


Bill D's July 30 reply to David Tucker's July 29, 2000 - Hi David, You win hands down! You listed 22 different meds. Nobody here takes that much. I looked them up on my Mayo Clinic Family Pharmacist CD. Don't your kidney doctor, your cardiologist and primary care doctor talk to each other? As Jon says, "Your meds are a mess." Five of them are contraindicated by each other and some of them do the same thing. Please take that list to a pharmacist and get him to give you a consult. Pharmacists know much more about medicines than doctors do. If your doctors don't kill you, those medicines will. Bill D. billdog@gate.net


Ruthie A, July 30, 2000 - Hi, Thanks to all who have written such encouraging notes. Hubby is doing quite well after his surgery and tries to do more than he is able, thus scaring me half to death at times. I got great news from my ortho doc the other day: no more spinal injections! :-) It seems the physical therapy, pain meds, and the injections are all working as planned and I am showing definite improvement in my gait and my ability to stand up straight. The doc was very pleased. Setbacks are sure to happen but we are definitely going in the right direction. The only problem now is that my physical therapist is working me so hard that it is too hard on my heart and we have had to cut back! That just prolongs the overall therapy time frame, but that may be a blessing in disguise since it is helping my back so much.
     A word of wisdom to the newbies (and the oldies, too). Always watch what you eat! I have been feeling really good for a long period of time so I thought that one meal at my favorite fast food place with friends wouldn't hurt much. Yeah, right. About 6 hours after coming home from that lunch I started having trouble breathing. It was my old nemesis flash pulmonary edema again. Fortunately, we caught it quickly enough so I did not have to go to ER, but we did have to consider it. All the sodium I ingested plus the extra liquid I drank were doing me in big time. Because I was stupid, I started getting into serious trouble. So don't be dumb like I was. Don't assume that one meal off the wagon won't hurt. It just might be the proverbial straw that you don't want. Just "food" for thought. Ruthie A. rlaba@mindspring.com


Dave Kreifeldt's July 30 reply to David Tucker's July 29, 2000 - Hi David, It appears that you are in luck. SS reviews all claims before the administrative law judge sees them. In some, such as mine, they change their mind, especially if there is new evidence of disability. That is when they approved mine. Hang in there, good ole Dave. dkreifeldt@suscom.net


Tom S' July 30 reply to Barry Weiner's July 29, 2000 - Hi, I am suspect of any post concerning the male hormone testosterone that is signed by a person with the surname Weiner. <g> You're not pulling my leg, are ya?
     In a test of Rick's prescription for a boric acid bug killer, I believe we have found a (excuse the pun) solution to part of my bug problem. After a massive invasion of ants lapping up the spiked sugar water, the numbers started to dwindle and by night fall the numbers were dramatically less. By the next morning I saw one or two apparently dazed ants wandering around the area where I tested Rick's modified sugary concoction. I also liberally applied boric acid powder in every conceiveable knook and cranny, drawer, floor, counters etc. in our kitchen area and have watched the roaches scamper about in a daze trying to figure out where they can go next. bhigheart@hotmail.com


Jean C's July 30 reply to Doug K's July 29, 2000 - Hey kids, It's really good to hear that someone else has trouble with sleepiness and yawning for oxygen - sounds like it might work - and I need something to work. I actually went to sleep or took a short cat nap at a traffic light the other day. It was a hot, dull drive and many other excusesl, but I have never done such a thing before. I only drive short distances but am wondering if I'm becoming dangerous. I think I'll cultivate a talent for yawning but please be sure to post here if anything else works for you, except, of course, those wake up pills. I take enough pills already. Happy fall, Jean C. ojean@oz.sunflower.org


Jon, July 30, 2000 - Hi everyone, I give up. Please use misterbooboo@prodigy.net if you want to e-mail me. I think eventually I'll get my ISP and my web host on the same wavelength and have use of my own domain name for e-mail, but for now I can neither send nor receive reliably under any address except the misterbooboo address. Thanks, Jon.


Rick M, July 30, 2000 - Hi, Because of the outstanding success of "Bionic Rick's Magic Ant Extermination Program" the management has decided that further tests are unnecessary and the procedure will be available by prescription only to holders of American Express Gold Card (Corporate only) and those whose names begin with F to L. Please try to keep the lines orderly and you are reminded that loud cheering for the inventor is unnecessary but hey, go ahead and cheer anyway. We are testing a new formula with added testosterone but will not release it until the double-blind test is completed. Users are reminded that the formula calls for overaged honey and not sugar, and the copyright holders will not be responsible for accidents resulting from improper use. rearadml@iu.net


John Len's July 30 reply to Jean C's July 30, 2000 - Hi Jean, As Doug mentioned, sleep apnea could be the problem. A sleep study confirmed my apnea and appropiate treatment. John. a_lenny6@hotmail.com


Claire, July 31, 2000 - Hi, This will probably sound really, really dumb but is it normal to have a really hard time with humidity when you are a CHFer? I live on eastern Long Island in New York and we are having a super humid summer! It's not that hot at all - 70° to 80° - but overcast and humid. Heat does not normally bother me, but in this dampness, I just can't breathe! Any ideas? Thank, Claire. weezey62@aol.com


Ernest D's July 31 reply to Bill D's July 30, 2000 - Hi Bill, My cardiologist also told me that good results are being obtained with lower doses of Coreg. At 25mg per day my EF has gone from 30% to 40% plus. Even this lower dose causes me some memory problems, but I don't have weight gain or leg pain at this dose. Ernest D. xerez@worldnet.att.net


Ernest D's July 31 reply to Barry Weiner's July 29, 2000 - Hi Barry, In reference to testosterone, my primary care doctor gave it to me and it caused fluid retention and increased cholesterol levels, so needless to say I no longer take it. It does appear to help some people with angina. As for angina, I had the EECP treatments and no longer have angina pain, but I still carry my nitro tabs just in case. Ernest D. xerez@worldnet.att.net


Roz W, July 31, 2000 - Hi mates, It has been strangely reassuring that this yawning (excuse me but I have to stop typing and yawn every time I write that word. I have been assuming that those of us in the dignified old age bracket were apt to nap in our rocking chairs and the constant yawning was to be expected. I spent last weekend on a small sailboat in a fair amount of wind and didn't yawn at all. Could it have been the extra oxygen from being over water? RWarriston@aol.com


Donna Z, July 31, 2000 - Good Morning All, There is a interesting article in today's Philadelphia Inquirer about the HeartMate 2. The device has been implanted in a Israeli patient as permanant solution instead of a heart transplant. The article is on www.philly.com was written by Megan Goldin of Reuters News. Hopefully, this may be a perfect solution for many of us. Only time will tell but let's all say a prayer for this man that it does work for him, and maybe for all of us in the future. Donna. dzak@worldnet.att.net


Tom S' July 31 reply to Rick M's July 30, 2000 - Hi, In the true American tradition of innovation, experimentation, and improvisation, a successful variable was introduced into the great anticide experiment precluding the utilization of anything that is "overaged" except the concoctor. I bow to your superior managerial and organizational skills, but will pursue my own formulations, which seem to be eminently practicable and highly successful. Besides, these are Southern ants and they don't need no high falutin aged honey. Plain ol' sack sugar's good 'nuff for 'em. bhigheart@hotmail.com


Jean C's July 31 reply to John Len's July 30, 2000 - Hi John, To sleep or not to sleep. The web site on sleep apnea you referred to sure has a lot of information and sure sounds familiar. I am doing my homework now and will take it up with my doctor when I go later this month. My snoring had been a family joke and if it turns out to be at the root of all this difficulty, won't I have egg on my face (egg substitute, of course)?! Thanks for the info, Jean C. ojean@oz.sunflower.org


Krista, July 31, 2000 - Hi there, I had a biventricular pacemaker implanted a little over a month ago and felt a great improvement in performing activities afterwards. At the same time, my doctor also switched around my meds to include 50mg of Coreg per day. Now, a month later, I've started feeling very short of breath again from simple activities such as walking across a parking lot. I went to the emergency room yesterday to ensure I wasn't going back into heart failure and everything came back normal. After ruling out that possibility, the doctor then reduced my daily dose of Coreg from 50 to 25mg per day. I realize that Coreg can often make one feel worse but is it normal to feel fine and then feel worse later? With everyone else's experiences with Coreg, have you found this to be true? Thanks, Krista. itkristalosey@earthlink.net


Dee D, July 31, 2000 - Hi Jon, Do you have any information on breaking out in cold clammy sweats with CHF? Is this caused by being in decompensated heart failure or could it be side effects from some of the medications? Thank you for any info. deedurham@webtv.net

Tom S' July 31 reply to Dee D's July 31, 2000 - Hi Dee, Have you been checked for diabetes? bhigheart@hotmail.com


Rich's July 31 reply to Claire's July 31, 2000 - Hi Claire, Yes, the humidity takes my breath away too. I thought it was just me, but I'm sure it has to do with heart problems. jahrling@northarkansas.net


Michelle, July 31, 2000 - Hi, I am just wandering what quantity everyone else is taking of potassium. dave@venomlpl.com


Rosemary F, July 31, 2000 - Hi, I would like to know about the cold, clammy sweats too. I have them when I have been unusually active. Rosemary F. freemano@southwind.net


Phyllis A's July 31 reply to Laurie's July 28, 2000 - Hello Laurie, I think that my cardiomyopathy, heart failure, and asthma are due to my treatment for breast cancer too. Praise God I'm alive but I know this treatment caused my medical problems. Feel free to e-mail me with any questions. phylcasurv@msn.com


Bill D's July 31 reply to Michelle's July 31, 2000 - Hi Michelle, I have been taking 2 Klor-Con slow release potassium tablets for every 60-80mg of furosemide (Lasix). In the last 4 years my potassium has been within the normal limits. Klor-Con has only 8 mEq but the other stuff like K-Dur and Micro-K has 10 mEq. The reason I take Klor-Con is because it's about half the size and a lot cheaper than the 10 mEq stuff. Bill D. billdog@gate.net


Tom S' July 31 reply to Claire's July 31, 2000 - Hi Claire, This summer has been rather unusual for the area of North Carolina that I live in. We have had more cloudy days than I can remember having in the last 15 years, and humidity has been relatively low, although there have been a few scorchers. I have had some really down days and am not certain to what I should attribute them. I barely break a sweat anymore even though I top the scale at 316lbs. Perhaps I have learned to pace myself but I do definitely feel more lethargic on hot days than on the wonderful cool days we have been blessed with for part of this summer. The other part of that equation is that normally we would run air conditioning on particularly hot days but this summer we have had it shut off because of the high cost of electricity in our city. Normally our electric bill runs an average of $200 a month and when you add that to a $65 to $75 gas bill (hot water and gas dryer), it gets beyond the affordable state for us when we add in car payment, insurance, house payment, phone, food for a family of 7 etc. The kids have been camping out in our living room, which is the coolest part of our 80 year old house because of the high ceilings. We keep the ceiling fans going most of the time.
     On the postassium question, I am currently taking K-Dur 20mEq at the rate of three tablets a day. Perhaps Jon would be so good as to translate that into English for us. bhigheart@hotmail.com


Mary H, July 31, 2000 - Hi Tom and Rick, I have the best idea. If ya'll would ask your cardiologist about the "ant situation," he may know how to give the critters some Coreg, potassium, Mavik, or something else any one of us humans have to take. Always remember, the Coreg may need lower doses. We wouldn't want the poor little critters to forget how to get around in your kitchen. However, if the doc suggests testerone for the critters, I encourage ya'll to say, "No Thanks!" After all, who needs a scout ant all buffed up and mad about the side effects of his other meds? M123_@excite.com


Ernest D's July 31 reply to Krista's July 31, 2000 - Hi Krista, I also have the problem with shortness of breath and less ability to function when on more than 25mg of Coreg. It seems to affect me after I have been on it for about 2 months. It also causes me to have leg, ankle, and foot pain; also increased memory problems, chest and back pain, unexplainable weight gain, fluid retention and who knows what else?! All I know is that I function better and feel better on the lower dose. I have told my doctor this too and I think he finally believes me. Ernest D. xerez@worldnet.att.net


Barbara S' July 31 reply to Claire's July 31, 2000 - Hi Claire, I live in Florida on the ocean and suffer greatly with the high humidity. I actually get short of breath, swell in my body more and feel just like a sponge soaking up humidity. I stay in air conditioning and do not go out very much. I also take a little more Lasix to eliminate swelling. You just have to dress with more natural fabrics and try to be as comfortable as you can. Stay in air conditioning as much as possible. Barbara S. Chnabby@aol.com


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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