The paperwork never ends The Archives
May 1-15, 1999 Archive Index CHFpatients.com

Jon 5-1     mailing list problems
 
Bill D's 5-1 reply to Brian's 4-30     education & info
 
Bill D's 5-1 reply to Dennis F's 4-30     blood pressure, CHF info & more
 
Tom's 5-1 reply to Kim S' 4-24     possible help with SSD paperwork
 
Bruce S 5-1     great news!
 
Joy R's 5-1 reply to Renee's 4-29     IV drug questions, update & more
 
Lisa M 5-1     intro & more
 
Christy M 5-2     gallstones & meds question
 
Heather 5-2     Susan P had surgery & more
 
Paul M's 5-2 reply to Bruce S' 5-1     great news, optimism & more
 
Bobby F 5-2     Urls of possible interest
 
John Len 5-2     real-life TMLR experience
 
Leland Y 5-2     learning a lot, new address
 
Pam E 5-2     has anyone heard from Tom W?
 
Julie Kendall 5-2     great news here!
 
Pati Flavin 5-3     weight, SSD, intro & more
 
Gatha E 5-3     dealing with SSD, update
 
Ben B 5-3     taking care of ourselves
 
Lori P 5-3     Sectral question
 
Bobby F 5-4     poem & more
 
Sara ?'s 5-4 reply to Gatha E's 5-3     SSD difficulties & upcoming cath
 
Ruth 5-4     Redux questions & more
 
Ruthie A 5-4     pooter wiped out, meds questions & more
 
LeeAnn D 5-4     Robin, Coreg question, update & more
 
Jon 5-4     mailing lists
 
Linda ?'s 5-4 reply to Christy's 5-2     gallbladder, stomach problems & more
 
Jon's 5-4 reply to Linda ?'s 5-4     Coreg, livers & stomach weirdness
 
Bobby F 5-4     poem
 
Dennis F's 5-4 reply to Bill D's 5-1     questions, CHF, blood pressure, heredity
 
Ruthie A's 5-5 reply to Dennis F's 5-4     BP, heredity & more
 
Ben B's 5-5 reply to Dennis F's 5-4     BP, heredity & more
 
Jana B 5-5     thallium stress test question
 
Lori P 5-5     update - good news & more
 
Heather S 5-5     cath experience
 
Jon's 5-5 reply to Heather S' 5-5     notes about caths
 
Bill D's 5-6 reply to Dennis F's 5-4     beta-blockers, heredity, BP & more
 
Hope M's 5-6 reply to Lori P's 5-5     mitral valve replacement
 
Bobby F's 5-6 reply to Helen O's 4-28     chest pain & a treatment question
 
Jon 5-6     some Coreg survey
 
Thomas Shea 5-6     intro & questions
 
Gus R's 5-6 reply to Ruthie A's 5-4     heredity
 
Gus R's 5-6 reply to Jana B's 5-5     thallium stress tests
 
Jennifer 5-6     taking care of my children questions
 
Brenda H 5-6     thanks Heather, update, new address
 
Roz 5-6     wrist cath questions
 
El R 5-6     update on implants & more
 
Louise N's 5-6 reply to Ruthie A's 5-5     heredity, & to Jana B about thallium tests
 
Jon's 5-6 reply to Roz' 5-6     wrist caths - radial artery vs brachial artery
 
Donna M's 5-6 reply to Dennis F's 5-4     heredity
 
Robin W 5-8     update on hospital stay
 
Roger C's 5-8 reply to Pam E's 5-2     Tom W
 
Pat D's 5-8 reply to Jennifer's 5-6     child care decisions
 
Hope M's 5-8 reply to Jennifer's 5-6     child care decisions
 
Joy R 5-8     bad days, friends & more
 
Roz S' 5-8 reply to Jon's 5-6     arm caths, questions & more
 
Sara 5-8     good news from cath, El R, & more
 
Jon 5-8     am taking a day off later this month
 
Sara's 5-9 reply to Roz' 5-8     arm caths
 
Sara's 5-9 reply to Joy R's 5-8     best wishes to you & Robin W
 
Sara 5-9     happy Mother's Day
 
Lori P 5-9     home pro-time test questions
 
Jennifer 5-9     thanks, talking to doc & more
 
Kim S 5-9     update, SSD, PPCM site & more
 
Robin W 5-9     update from my suite, prayer request & more
 
Jon's 5-9 reply to Robin W's 5-9     milrinone & BP info
 
Brenda H 5-9     I have low EF and got pregnant
 
Debbie's 5-9 reply to Joy R's 5-8     having a place to speak, faith & prayer, & more
 
Bobby F 5-9     Url of possible interest
 
Patricia G 5-10     do I need meds again question & more
 
Al M 5-11     Urls to see, golfing, attitude & more
 
Phyllis A 5-11     intro, retaining fluid & more
 
Pati F 5-11     update, more info, doc & more
 
Paul M 5-11     Milo is signing off
 
Ginger's 5-11 reply to Patricia's 5-10     meds after heart improvement
 
Ginger's 5-11 reply to Phyllis' 5-11     welcome, chat, prayer request
 
Lori P 5-11     post-surgery pregnancy questions
 
Roger C's 5-12 reply to Lori P's 5-9     at home pro-time testers
 
John Bott 5-12     my new diet for diabetes & cholesterol
 
Phyllis A's 5-12 reply to Ginger's 5-11     cancer treatment & damaged hearts questions
 
Brenda H's 5-12     thanks for support
 
Robin W 5-12     update on transplant process
 
Ann C 5-12     echo report questions
 
Greg Friend 5-12     SSD questions
 
Sara's 5-13 reply to Ann C's 5-12     bad experience with doctors
 
Phyllis A's 5-13 reply to Greg F's 5-12     Disability decision
 
Claudia S 5-13     cath questions & more
 
Karen P's 5-13 reply to Greg F's 5-12     Disability decision
 
Bill D's 5-13 reply to Roger C's 5-12     home pro-time testing system cost
 
Paul M's 5-13 reply to John Bott's 5-12     high protein diets for diabetics & more
 
Paul M's 5-13 reply to Greg F's 5-12     Disability decision
 
John Len's 5-13 reply to Greg F's 5-12     Disability decision
 
Robert Harmon 5-13     can I return to physical job?
 
Christine 5-13     update, alternative treatments
 
Jon's 5-13 reply to Ann C's 5-12     EF & heart size changes, tests
 
Jon's 5-13 reply to Claudia S' 5-13     caths, angiograms
 
Sara's 5-14 reply to Claudia S' 5-13     caths, angiograms
 
Jan 5-14     EF & meds questions
 
Melissa 5-14     18 with CHF, seek others
 
Gatha E 5-14     Disability results
 
Gary M 5-14     salty taste in mouth question
 
Ruthie A 5-14     update, edema, meds, wrist problem & more
 
Jon's 5-14 reply to Ann C's 5-12     heart size & doc's terms
 
Jamie 5-15     met Robin W & more
 
Linda O's 5-15 reply to Melissa's 5-14     CHF info, hang in there & more
 
Libby 5-15     intro, symptoms, doctor & more
 
Robin W's 5-15 reply to Phyllis A's 5-12     chemo induced CHF & more
 
Pat D's 5-15 reply to Claudia S' 5-13     cath & angiogram, iodine dye allergy & more
 
Pat D's 5-15 reply to Robert H's 5-13     returning to work or not
 
Robin W 5-15     update from Club Med
 
Joy R's 5-15 reply to Melissa's 5-14     coping with chronic illness
 
Ben B's 5-15 reply to Jan ?'s 5-14     EF measurements
 
Anne C 5-15     thanks, meds, supplement questions
 
Bruce S' 5-15 reply to Melissa's 5-14     coping, slow improvement, prayer & more
 
Roger ? 5-15     left ventricular aneurysmectomy questions
 
Tracy M 5-15     weight/eating problems, prayer request
 
Roger C's 5-15 reply to Bill D's 5-13     pro-time home testing machine cost
 
Jon's 5-15 reply to Roger ?'s 5-15     surgery information
 
Doris R 5-15     Coreg hopes, Disability question


Jon, May 1, 1999 - Hi everyone, Mailing lists still won't work. I am talking to more experienced Outlook 98 users but if they don't come up with something soon, I will have to flush both my mailing lists and start over. So it goes - the joy of the Web. I'll let you know tomorrow what I'm going to do. If anyone has any knowledge of Outlook 98 personal distribution lists, let me know. Jon.


Bill D's May 1 reply to Brian's April 30, 1999 - Hi Brian, You'd better start by reading The Manual. Then start educating yourself about CHF and your disease. You can find all the answers right here at Jon's Place. Click on Site Index at the top of this page. Bill. billdog@gate.net


Bill D's May 1 reply to Dennis F's April 30, 1999 - Hi Dennis, What type of EF test are you going to get? Will they do an angiogram, a MUGA or an Echocardiogram? You can find out about all of them if you click on Site Index at the top of this page. I would imagine they have been giving you medication for your high blood pressure. What did they give you? Maybe it's working? That is very high blood pressure. It could be from plaque building up in your arteries. Keep us posted, Dennis and welcome to Jon's Place! Bill. billdog@gate.net


Tom's May 1 reply to Kim S' April 24, 1999 - Hi, When I became disabled, I used the services of a company called Allsup, Inc. They are a disability coordination service and they completed all the paperwork for my SSD claim. Their address is: Allsup Inc. 300 Allsup Place, Belleville, Il. 62223-9941. Their phone number is 1-800-279-HELP. Maybe they could help you. tteeters@neo.rr.com


Bruce S, May 1, 1999 - Hey everyone, It's been awhile, but let me thank God for my news this week. I went in for my yearly test and the doc called about 2 hours later telling me my heart was back to normal size, EF 58, BP 116/70. So the next day the doctor calls back with the blood work tests and after talking with the other doctors, we started lowering the meds very slowly and I will check in every 2 weeks. I hope everyone is doing great. I read the posts almost every day. God bless all! baspencer@rtelco.net


Joy R's May 1 reply to Renee's April 29, 1999 - Hello Renee, I was very interested in hearing about your dad being on dobutamine. I also have been on dobutamine since November of 1997 and infuse 5 days a week for 12 hours at a time, and then every night I infuse with hyperalimentation, so I am on continual IVs except for two 12 hours periods a week. The doctor tells me I can't be on it continously because it will wear out my heart quicker. I noticed that your dad's infusions have decreased to once a week, how wonderful.
     What I want to know is, how does he feel when he isn't infusing? When I stop my infusion, within moments, I feel a tightening in my chest and start to get short of breath and stay where I am, competely useless, until I hook up again. Does your dad have any problems associated with withdrawal? I am glad they found a drug to help him. I feel that without dobutamine, I would have died in November of 1997, yet here I am, typing to you and still breathing. Amazing. I also have had a lot of problems with IV access. I have had 3 surgeries in the last year for access and now have a hickman cathether. I hate it but it is not giving me the problems the others did, just itches and burns, especially around the sutures but I cut one of them and that helped. Then the cathether slipped out a few more inches and I've yet to tell the surgeon because I know I should leave things alone so I'm using some strong tape so it won't slip anymore. I enjoy reading the posts and feel I have lots of new friends. Joy. wapalaremi@aol.com


Lisa M, May 1, 1999 - Hi, I am 32 years old and was diagnosed with severe cardiomyopathy 4 years ago. My EF is 21%. I had an AICD put in 4 years ago due to my heart going into v-tach quite often. I was ok until this February, when I got a flu-like virus, which put me into CHF and landed me in the hospital for 3½ weeks. I am now at home, awaiting a heart transplant. I have 2 small children at home, who are my life. I take Prilosec, Demadex, K-dur, Coumadin, Accupril, Synthroid, Cordarone and Lanoxin. I think that's enough. <G> I just want to say that after finding this site, it is nice to know that there are other people in almost the same situation. Please feel free to e-mail me if yo would like. Goldylcks7@aol.com


Christy M, May 2, 1999 - Hi all, If anyone has information on any relationships between CHF drugs and increased incidence of gallbladder stones I'd be very interested. I'm taking Lasix, Lanoxin, Coumadin, Klor-con, Coreg and Prinivil. I started them all 2 months ago. This past week I've had two bouts of what is believed to be gallstone attacks and the second attack was severe enough to send me to the ER. Thanks in advance for any information. Stay well. breeZip@hotmail.com


Heather, May 2, 1999 - Hi, My aunt, Susan P, is a member of your group. I wanted to let you know that she had open heart surgery on Thursday of this last week in April. She is still in CCU (3 days now) and is doing fine with a few minor exceptions. Her blood pressure has dropped very low - 90/50 - a few times and she is on the edge of pneumonia now. She had 2 valve replacements, the aortic and mittral. You probably remember that my aunt had her first open heart surgery on November 4, 1974. She is truly a remarkable lady and she admires each of you. I am especially close to my aunt since I live with her. Please keep her in your prayers and I will keep you posted on her recovery. God bless each of you. AnglofNgt@aol.com


Paul M's May 2 reply to Bruce S' May 1, 1999 - Hi Bruce, That is fantastic news! Your news is as good as mine was a few months back. I try to tell everyone not to throw in the towel on their heart disease because some will get better and you don't know which group you will be in. I think it is also important that doctors just don't stop with only one MUGA or echocardiogram. You should get a repeat test at least every 1-2 years. A heart could go back to normal size and the patient will not necessary notice it because of all the meds he is on. Bruce, I am glad that they are beginning to back you off the meds! paulmcferrin@worldnet.att.net


Bobby F, May 2, 1999 - Hi Jon and everyone, I just found another web site called The Institute Of Heartmath. The Institute is a research and education organization which has developed simple and user friendly tools people can use to relieve stress, and break through into greater levels of personal balance, creativity, and intuitive insight. For more, go to this Url: www.heartmath.org/. I also found a site called BioMedNet: "The Internet community for Biological and Medical Researchers" at: www.biomednet.com/. lfwcor@washingtonnc.com


John Len, May 2, 1999 - Hi, I just want to update you about my TLMR laser revascularization surgery. My angina slowly went away and while I have my limitations due to my heart attack, my life is much better than last year. I don't regret the procedure. John. a_lenny6@hotmail.com


Leland Y, May 2, 1999 - Hi, I don't post often but I read the site quite often. Keep up the good work. I am learning more and more about my own CHF, just by reading everyone's post. Hopefully, I can add to it one day. My new e-mail address is LLYEE@surfside.net


Pam E, May 2, 1999 - Hi, Has anyone seen or heard from Tom W? Can you give me a call? I haven't seen or heard from him in awhile and am concerned. Pam. gpcs@fastlink.com.au


Julie Kendall, May 2, 1999 - Hi, I am soooo happy! My cardiologist told me Wednesday that my heart was back to normal size and my ejection fraction is 59. He said the reason I had been feeling so crummy was because I was taking a bunch of medication for no reason. He is going to keep me on a low dose of prinivil and that is it. I am stunned. It took almost 3 years but there is hope. I take no credit, it was all God. This experience has changed me forever. I am no longer any trace of who I was before. I have slowed way down, gotten my priorities in order, become sensitive to others, the sick, the elderly, the poor. God used this episode all for his glory. I'm just so thankful and ecstatic that I am basically telling even strangers my great news. I don't feel exactly like I did before but this is good enough for me. Hooray! Thank you, God. jkendall@gorge.net


Pati Flavin, May 3, 1999 - Hi, When I joined aol 3 years ago and picked my screen name, I never realized how prophetic it would be. I chose it because my middle name is Stella and I am named after my grandmother. She wouldn't let my mom name me her full name, which was Stella Othelia. I still think this is a cool name. While I might not have liked it too well while a student, out of respect and love for gram, I picked the O and 2 because I wish my mom had named me after her. More to the point, I am glad I found this site! I read The Manual. After reading most of the posts, I realized I am not alone on this planet.
     I was diagnosed 2 weeks ago as having DCM and CHF with an EF of 38. I am 41 years old. Would you believe I had only 2 gray hairs before I was diagnosed?! My meds are 10mg Monopril, 20mg Lasix, 0.25mg digoxin and aspirin. After my trip to the hospital and most of the tests mentioned here, I fired my internist and also my cardiologist. (who didn't seem to have one - heart that is) I am currently on disability benefits until they concur on just what may have caused it. I work at an extremely physical job and wonder if I will return to it. The current theory is that I had some virus that went undetected. I am also lucky in that I have no arterial blockages and no sign of any buildup in my arteries. I am overweight and after reading on this subject, I am sure it is not all do to overeating. I would appreciate any and all advice. Thanks. Pati. StellaO2@aol.com


Gatha E, May 3, 1999 - Hi, I have been hanging in there for 1½ years and finally got my hearing with the Social Security judge May 13. My lawyer is going to let me know later this week some of the questions that he will probably ask, so maybe I won't be as nervous. It has really been a long and drawn out process. I appreciate Jon's work put into the Social Security page as it really helped me. If anyone is out there and doesn't have a lawyer, please get one. That 25% I will pay him will be worth every penny if we get what he thinks we will. It's terrible what the government puts you through getting there when you are so sick that sometimes you want to give up. Their awful letters have a way of really hurting your feelings. It's like they really never read what you or your doctors have written. I guess that is to discourage you and make you quit the process. Hang in there! I will keep you posted as to the final verdict. jell855859@aol.com


Ben B, May 3, 1999 - Hi, I just read about a new UCLA study of 753 CHF patients who were hospitalized in 1997 and 1998 more than twice for worsening symptoms. It showed that 70% of them had not stopped smoking or drinking, and that 36% of them didn't even regularly fill their digoxin prescriptions! It just goes to show we have a lot more control over the progression of our disease than our doctors do, and probably more than we thought. bdbrinkman@juno.com


Lori P, May 3, 1999 - Hi, My sister was recently put on Sectral. It's for high blood pressure and irregular heartbeat. Does anyone know much about it? Thank you.lpearson@cdsinet.net
 
Jon's Note: It's a beta-blocker. You can use the Links page for more info.


Bobby F, May 4, 1999 - Hi, I have a little poem I received from a friend of mine who is a member of this board and who deserves credit for this instead of me. I have forwarded it to some of you on this board with whom I have direct e-mail contact but anyway, I just wanted to post it. Again Pam S, thanks for your friendship and all of your good messages, including this one. I hope you enjoy this as much as I did.

I have in my hands two boxes
Which God gave me to hold
He said, "Put all your sorrows in the black,
And all your joys in the gold."
 
I heeded His words, and in the two boxes
Both my joys and sorrows I store
But though the gold became heavier each day
The black was as light as before
 
With curiosity, I opened the black
I wanted to find out why
And I saw, in the base of the box, a hole
Which my sorrows had fallen out by
 
I showed the hole to God, and mused aloud,
"I wonder where my sorrows could be."
He smiled a gentle smile at me.
"My child, they're all here with me."
 
I asked, "God, why give me the boxes,
Why the gold, and the black with the hole?"
"My child, the gold is for you to count your blessings,
the black is for you to let go."

     Also, to clear up some confusion, I go by Robert or Bobby and I have posted both ways. I also have 2 e-mail addresses: brasswood@greenvillenc.com or lfwcor@washingtonnc.com.


Sara ?'s May 4 reply to Gatha E's May 3, 1999 - Hi, Gatha, I never cease to be surprised how difficult it is to get Disability. About 8 years ago, if a widow filed for Social Security for Disability, she had to be on her death bed. You had to have severe lack of heart function and it had to be a permanant problem. It's depressing enough to have a health problem and more so when you realize it's disabling you, and when you appeal and present your case to the judge, well that's more depressing then one can imagine. Who wants to have to prove or shout about being sick? Well, now that law has been changed and when one files it is on their own merit. I never did understand what difference it made if you were a widow, single, married or otherwise. Good luck with your Disability problems.
     Wednesday is my big day. I will have my cath then, which should only be 12 hours but I was told to pack an overnight bag since they may keep me. The only thing I forgot to ask my doc was if he thought I needed angioplasty, would he do it right then? My brother in law had to go back after his cath but he was with Kaiser. I don't know if that made a difference. I am not looking forward to going through a cath twice. God bless all of you. Sara. sunny20853@aol.com


Ruth, May 4, 1999 - Hi, I'm just curious. Were any of you prescribed Redux a year or two ago? I was, and am wondering about the things I've heard about it causing heart valve damage. When I went to my doctor last summer, he reassured me that Redux really didn't do anything like that and that I just needed to lose weight to get rid of the excess fluid. I plan to have a complete physical when school is out in about 3 weeks (I teach), so I'll know more then as to what I really have. If I don't get my regular doctor to do the tests I want, I'll try to find a cardiologist because this really has me worried. hb40307@navix.net
 
Jon's Note: See this page also. Redux is Dexfenfluramine


Ruthie A, May 4, 1999 - Hi everyone, Remember a few days ago, hearing about a computer virus called Chernobyl that was pretty devastating? It made the news briefly. Well, I was one of its victims and I am still feeling traumatized over it. It was a vicious virus that wiped the hard drive clean and then prevented you from opening your system. I have lost everything, some of which can be replaced and some of which cannot. So please help me out, ok? Write to me. I no longer have your e-mail addresses on file. Some of you I can recreate from archived posts, but some I can't find.
     On to better things, We finally move into our new home on May 5. It has been tough living in a hotel for nearly 3 weeks and eating out for every meal has become very old. I have struggled with fluid retention because of difficulty controlling my sodium intake. My feet and legs swell and then go back down. It's hard to know exactly how much fluid I am retaining. My liver has had a tough time and has stayed swollen the entire time we've been in transit. Hopefully that will improve with home-cooked food.
     Last time I saw my cardiologist, he tried taking me off Valsartan and put me on Hyzaar, which is a combination of Cozaar and HCTZ. I had a lot of problems with diarrhea and also increased heart rate. I don't think the extra diuretic helped any either. Has anyone else had problems with Cozaar or Hyzaar? This one's a new one to both me and the doc. I have missed all of you. Welcome to the newbies; you have found the best place for support and information. Take care everyone and stay well. Ruthie A. rlaba@preferred.com


LeeAnn D, May 4, 1999 - Hi everyone, I have a crick in my neck from catching up on the posts, and I didn't even go into The Archives! After my big computer problems and my little vacation to San Diego, I'm hoping to be more regular at this site and my e-mail. Robin, are you in the hospital or at home still? I go for some annual tests tomorrow and Thursday, and am hoping for some improvement. I haven't seen the doc in 4 months or had an echo in 6. The last time, my EF had gone down from 18 to 12. Has anyone been on Coreg for awhile - found it didn't improve EF - and been taken off it? I'm taking 50mg a day and after 5 months, my EF had gone down so I'm just curious. I don't want to take it and risk diabetes if it isn't helping. Otherwise, I feel fine still. I spent 7 hours at Sea World a couple of days ago and even though I was exhausted that night (so was the rest of my family), I didn't really "pay" for it the next couple of days. Of course, I did sit and watch a lot of shows while there, not constant walking. Well, take care everyone. I'll let you know how my tests go. Jon, are you still lifting? LeeAnn in Phoenix, DCM, age 38. ddavis1057@aol.com
 
Jon's Note: Yeah, but been sick about 7 days now, so doing only the minimum for now.


Jon, May 4, 1999 - Hi, I got the lists working again but it took a huge amount of time to set it straight. I will start accumulating info again now to send out and will try to go back and catch up on support and prayer requests tomorrow. Thanks to those who helped me via my test message. It is possible a few names got lost along the way so if you don't get anything in awhile, check with me to be sure you are still in my address book. Jon.


Linda ?'s May 4 reply to Christy's May 2, 1999 - Hi Christy, I had gallbladder attacks for about 3 years and would take the Rx drug called Reglan. It did help for awhile but I ended up in the ER a couple of times too. The last doctor said it put a lot of stress on the heart and I should get it taken care of. I had my first heart attack in 1993 and I promptly quit smoking and lost 50 pounds. I did not put one thing in my mouth that was unhealthy. The surgeon later told me that our gallbladder needs some fat but my cardiologist didn't mention that. I was afraid of the anesthetic but it was fine. I do have problems with my stomach now and I don't know if it is related, or maybe Coreg? Jon, is your stomach still acting up? I get rid of the pain and discomfort if I lay down. Linda O, EF 24. norvalo@clarinda.heartland.net


Jon's May 4 reply to Linda ?'s May 4, 1999 - Hi Linda, I am down to 25mg Coreg twice a day and have been for awhile. I have had that stomach "fullness/swelling" once since reducing my Coreg dose but only once. That means I can't be sure it is Coreg related. I do know that when my liver used to swell up - when I wasn't so well compensated - I got a lot of stomach discomfort and weird feelings. I'm sorry I don't have any concrete results but them's the joys of heart failure, don'cha know?! :-) Jon.


Bobby F, May 4, 1999 - Hi, I know this forum is about CHF but I wanted to post this about finding that inner strength from the Almighty.
 
Our Father knows what's best for us
So why should we complain?
We always want the sunshine,
But He knows there must be rain.
 
We love the sound of laughter
And the merriment of cheer,
But our hearts would lose their
Tenderness if we never shed a tear.
 
Our Father tests us often
With suffering and with sorrow,
He tests us not to punish us,
But to help us meet tomorrow.
 
For growing trees are strengthened
When they withstand the storm,
And the sharp cut of the chisel
Gives the marble grace and form.
 
God never hurts us needlessly;
And He never wastes our pain,
For every loss He sends to us,
Is following by rich gain.
 
And when we count the blessings
That God has so freely sent,
We will find no cause for
murmuring and no time to lament.
 
For Our Father loves His children,
And to Him all things are plain.
So He never sends us pleasure
When the soul's deep need is pain.
 
Whenever we are troubled,
And when everything goes wrong
It is God working in us,
To make our spirit strong.
 
     Bobby Farish. lfwcor@washingtonnc.com


Dennis F's May 4 reply to Bill D's May 1, 1999 - Hi, Bill, Thank you for responding to my question. My test is an echocardiogram and yes, I have been taking hypertension medication for about 20 years! I have gone to some of the top hypertension clinics in Illinois and no one has been able to keep my blood pressure down for very long. Now, suddenly my blood pressure is normal and I feel awful because my body is not used to it being normal. I am wondering if my heart is not strong enough now to pump the blood so forcefully as it once did. Could that be the reason for the lower readings? Up until now, about every 2 months the doctor, a specialist in this field, had to change my medicine in an effort to get it down. About 2 months ago, I had a 24 hour blood pressure monitor hooked up to me that I wore to work and during the night. The doctor had not seen such awful readings in the past 3 years. 97% of the readings were over the acceptable of 140/90, with some going as high 218/166. Currently my doctor is Dr. Elliott at Rush Presbyterian St. Luke's Medical Center in Chicago.
     Hopefully my echocardiogram will be helpful in determining what may be happening. Right now for blood pressure, Dr. Elliott has me on one mg Mavik, 1200mg Normodyne, 20mg Minoxidil, 100mg Demadex and 40mg Zocor. Does anyone have any information that congestive heart failure could actually lower blood pressure? My mom died at 80 and she had congestive heart failure. Her doctor wanted to do some kind of valve surgery but she never wanted to do it and at the end was too weak for it anyway. Can CHF be hereditary? I am 56 and used to be as strong as a bull but now my wife could beat me up (thankfully she hasn't done it - yet). My test is rescheduled for May 24. I'll keep you informed. frerichs@keynet.net


Ruthie A's May 5 reply to Dennis F's May 4, 1999 - Hi Dennis, Good for you that your BP is normal! Don't look a gift horse in the mouth; even a short time of normal BP is better than none! As far as CHF being hereditary, my doctors say that there is some validity to that thinking. My mother also has CHF. There are several others of us in the forum that have parents who have had CHF. I really don't understand the mechanism of the heredity but it sounds logical to me. Does anyone else have an opinion? Ruthie A. rlaba@preferred.com


Ben B's May 5 reply to Dennis F's May 4, 1999 - Hi, One time I was having an echo and the technician told me that if my blood pressure was high (it was 150/90), it meant my heart was not that weak. Of course, this was my echo when my EF measured 10, so that's why I don't listen to echo techs that much. I think blood pressure is a really complicated thing and I think it may have more to do with the constriction of the vessels than the strength of the heart. Some forms of DCM are familial or inherited but usually it seems like almost all members of the family get it if this is the case, so you would probably know if yours was already. I do think lifelong high blood pressure can also contribute to it. Good luck on your echo. I hope you don't have this affliction but an echo should let you know. bdbrinkman@juno.com


Jana B, May 5, 1999 - Hi, Do any of you know if it is safe to do a thallium stress test if you have CHF, cardiomyopathy and mitral valve regurgitation? I heard somewhere it wasn't safe if you have one of these conditions but I can't remember which. A doctor I saw wants me to do one but I am hesitant since I heard somewhere it wasn't safe. Thanks. Jana. JByers4u@aol.com


Lori P, May 5, 1999 - Yea! I had my checkup today with the surgeon. He was extremely pleased with how I'm recovering. My valve is "clicking" the way it should, and my heart sounds strong. Evidently, the Coreg is working, because my chest x-ray revealed that my enlarged heart is not so enlarged! It's almost back to the size it should be. He credits Coreg, along with the fact that now my valve is fixed and my heart is pumping correctly. I also saw the wires that were used to pull my sternum back together and I jokingly asked the doctor if I would set off any metal detectors. He said yes. He gave me a card for my wallet that explains my situation. Isn't that weird? I've never heard of such a thing. I just wanted to spread the good news. lpearson@cdsinet.net


Heather S, May 5, 1999 - Hi, After all the advice I received through the forum, I thought I was quite prepared for my cath; Not so. You fell down on the basics in failing to advise me that hospital gowns are tied at the rear. This was not an auspicious beginning. A friendly nurse helped me to reverse the gown while the rest concealed polite snickers (I have good peripheral vision). Onto the table and the first thing they did was put a plastic tee junction into the back of my hand. At least, they tried to. After 5 minutes of wrestling with tiny veins, they gave up and used the crook of my elbow. I asked what it was for. They said, "That's in case we have to plug something in to revive you." "Where's my happy juice?" I said. "Too late for that." they replied. "It takes 20 minutes to work and we'll be practically finished by then." Then came the crowning blow, "We'll just shave you a little bit." they casually said. "Makes it smoother." Fifty-two years of age and I managed to have 3 children without the humiliation of a shave.
     Well after all that, the cath itself was almost an anticlimax. There were odd sensations in my abdomen as the tube wended its way upward and a few slight twinges of heart pain while it waved around in my heart but no more than pin pricks. Mostly it was just plain eerie watching those little puffs of dye on the monitor as they swirled around inside my heart. Once someone raced over and put a tablet under my tongue but I hadn't felt anything. I was reminded of a quote from Frank Herbert's book Dune, that "fear is the mind-killer." The actual procedure was much easier than my journeys into imagination. What made me laugh, even though it hurt, was when after this sophisticated procedure, 2 hefty nurses stood on a stool beside my stretcher and took turns leaning their whole body weight into my groin to apply pressure to close up the artery. This part of the operation must be all of 3 million years old.
     They used a sheet of tin to slide me back into my bed and I had to lie flat on my back for 3 hours and not get up for 6. Luckily I listened to your advice and skipped my diuretics! After all this stress, I was starving. It is not at all easy to eat your dinner while lying absolutely flat on your back but I didn't spill a drop. So don't worry about the cath. Remind me next time I post to tell you all about the TEE. I have a good appetite but eating a garden hose turned out to be no picnic. Heather S. rock@net-tech.com.au


Jon's May 5 reply to Heather S' May 5, 1999 - Hi Heather, Not to dampen your humor but everyone about to have a cath should read the Cath page, which describes the shaving, and the timing and warning to be sure you get a sedative. Jon.


Bill D's May 6 reply to Dennis F's May 4, 1999 - Hi Dennis, Your doctor is giving you a triple whammy to reduce your blood pressure - Mavik, Normodyne and Minoxidil! If you look up Jon's information on Coreg you'll see that it's a beta-blocker similar to Normodyne. Coreg certainly does reduce visits to the ER and makes us live longer. Some doctors feel that all beta-blockers will, if tested, do the very same thing. Those of us who started Coreg with high blood pressure to begin with, didn't have any trouble getting used to it. Those who had low blood pressure to start, had a terrible time adapting to each increased dose. I can't swear to it Dennis, but I think those were the people who felt better if they stuck with it. Like you, I have had high blood pressure all my life. When Coreg reduces my diastolic BP to 60, I feel terrible! My systolic has slowly climbed back to it's usual 170-180. I'm also having trouble with my heart slowing down. I've cut back on the Coreg to see if it will help. Yes, a predilection for heart problems can be inherited! Bill. billdog@gate.net


Hope M's May 6 reply to Lori P's May 5, 1999 - Hi Lori, I had my mitral valve replaced in 1994 and have all the wires in my sternum but have yet to set off the alarm at the airport scanner. Congratulations on the success of your new valve! Hope. mcneils@ibm.net


Bobby F's May 6 reply to Helen O's April 28, 1999 - Hello Helen, As far as your chest discomfort, I take 2 things daily that takes care of that. Yesterday, I got busy and later in the afternoon, I didn't take my pills on time and the chest pains even ran down through my stomach. As soon as I took these, the pain went away. I take over the counter Naproxen Sodium twice a day. Also, my doctor prescribed 0.5mg Valium as needed and I usually average 1-2 a day. Those 2 pills take care of my chest pain or discomfort.
     Concerning a question of my own, I have been reading about Immune Globulin Injections which are supposed to help young people with severely damaged hearts to recover without transplants. Is there anyone out there who has taken these injections and have recovered, or have had them and can report on them? Any answers are appreciated. Also I wanted to add this:
 
"We always hope; and in all things it is better to hope than to despair.
When we return to real trust in God, there will be no room in our soul for fear." - Goethe
 
     Bobby. brasswood@greenvillenc.com


Jon, May 6, 1999 - Hi everyone, I keep getting messages about some Coreg survey. This is not a survey of mine. If someone asked my permission to use addresses off this site, I do not remember it. Anyway, do not think that I am associated with this survey in any way, whatever it is. I am not! Jon.


Thomas Shea, May 6, 1999 - Hi, My father had a minor heart attack 6 weeks ago. Three days ago, I went to my family doctor for a checkup since I had some minor chest pain that I attributed to stress. Otherwise, physically I felt good with no other symptoms other than being out of shape. With a quick EKG, a trip to a cardiologist, an electrocardigram, immediate hospitalization and a cardiac cath (which went fine), the past 3 days have been life-changing, to say the least. I was diagnosed with idiopathic cardiomyopathy. Of course, I never heard of this before 3 days ago and now still feel I know little about this condition. I am just starting my research. I am a 34 year old male, happily married (my wife is a nurse), with a 2 year old angel for a son, and another baby on the way. I am by nature a critic regarding many conventional medical procedures and treatments, although I am thankful that such procedures and treatment found my condition and started treating it.
     I believe that unconventional approaches and what I call "out of the box" thinking also needs careful, measured consideration. I asked my cardiologist if he was aware of any cutting-edge, new, or unconventional treatments for my condition, and I got a predictible, "No." Anyhow, here are my thoughts and questions, for anyone who might want to respond:

  1. I keep seeing this EF referred to. I do not know and was not told what mine was, other than it was decreased. What is considered low? What is considered normal?
  2. I am on 3.125mg Coreg 3.125 twice a day, 10mg Zestril and 5mg Coumadin. I have been put on a low sodium diet and am supposed to start cardiac rehab in 2 weeks. Does this sound like a relatively normal treatment? Are the meds low, high or normal doses?
  3. In reviewing other Internet sites, I came across 2 posts which raised my eyebrows. One woman claims she went on one of Dr. Atkins' diets and that her left ventricle shrunk to normal and her EF increased 10%, and she lost 45 pounds. She says she went off this diet and got worse. She does not say what other conventional treatment she may have had or been on. Any thoughts?
  4. Another post said that anyone with cardiomyopathy should read a book about a certain CoEnzyme Q10. Does anyone know about this?

     Thanks. Sheaesq@aol.com


Gus R's May 6 reply to Ruthie A's May 4, 1999 - Hi Ruthie, In my opinion, excepting things we are able to control, or at least influence, by changing our diet or lifestyle, heredity is the biggest single factor in almost all heart ailments. Since I'm nuts, my opinion isn't worth too much but the fact that any life insurance application form that I've ever seen asks if one has a family history of heart ailments makes me think there is a definite connection. Gus R. gus13@net66.com


Gus R's May 6 reply to Jana B's May 5, 1999 - Hi Jana, I'm not sure the thallium stress test is safe if you have CHF, cardiomyopathy and mitral valve regurgitation but I have those 3 with a topping of a-fib, and had the test without any problems. I hope you get some more positive answers but by using "search" at Jon's Index Page I came up with Pam E and Karen O in the Hall of Fame surviving it and also got some hits in The Archives. Here's a partial quote from one: Bill D's August 13 reply to Peggy C's August 13, 1998 - "Hi Peggy, That nuclear stress test isn't bad at all..." Best wishes, Gus R. gus13@net66.com


Jennifer ?, May 6, 1999 - Hi all, It's been a while since I wrote. I haven't been to the doc lately but have been extremely tired. The last I heard my EF was 30% but my valves were worse, so maybe that is it. Anyway, I don't have much swelling. I consistently take 40mg Lasix a day so I am not sure if my CHF is any worse or if it is just my valves. I have an appointment Tuesday. All I know is that I wake up tired, I lay down several times a day and am ready for bed about 2 hours earlier than before. My job consists of working from home on my computer. No physical acts are required other than a lot of typing and some brain work but even after an hour or two of that, I feel the need to lie down. I am the single mother of 6 children and am finding more and more that caregiving is becoming exhausting, too. I can't keep up. My ex-husband is a wonderful father and makes good money, and is willing to be their primary physical caregiver with me seeing them whenever I want and doing some things he can't because of my job flexibility but my will is so strong and I have been fighting it all this time. I just nicely tell him, no thanks, I'll manage somehow, but a couple of weeks ago he told me that he can tell I can't manage well alone. I want to do what is best for the children. Any advice? I know this is a tough one. jbutler@randallpub.com


Brenda H, May 6, 1999 - Hi, Thanks Heather, for your uplifting story of a cath.That didn't sound too bad! I had my 8 month postpartum echo done and haven't got all the results but they did say my LV has gone down to 6.8cm. It was at 7.9cm in January. So that's good news. Also, I have a new e-mail address. We can't afford aol anymore. Thanks for your support. Brenda. Brendakay@wa.freei.net


Roz, May 6, 1999 - Hi Jon, With reference to your cath page, I have been fighting successfully to avoid a cath for some time now. My doctor dismisses the possibility of using a brachial artery because of their much smaller size. Could you tell me how to find the literature the medical correspondent Steve Salvatore of CNN used in his contribution to your most useful page? Thanks in advance, Roz. RWarriston@aol.com


El R, May 6, 1999 - Hi, Well, I thought I'd let you all know I survived. :-) I now have a defibrillator and a pacemaker, a dual unit. I am feeling a sense of relief and security, having such a high tech little computer in me. It is a Medtronic's unit. So far so good, nothing shocking. <G> My doc here in Las Vegas talked to my doc at UCLA and together, they decided they both would feel better putting it in, even though in the EP study they were not able to induce any V-tach. There are arrythmias, so it was felt this was the safest route for me. The doctor thought I was going to need a pacemaker within the next couple of years, so to spare me an extra surgery, they gave me "the works" now. I am feeling pretty good, just a little sore. The "reading assignment" that I had typed up for my anesthesiologist created a bit of interest in the cath lab when I asked to have it read during the EP study as well. The personnel thought it was a cool idea, never having had that request before. I guess the proof is in the fact that being gorked twice in one day, I still woke up feeling okay, with no nausea. My anesthesia guy is the greatest and had never done one of these, so he learned something new too. It is so cool to have docs that are really there for you. Thanks for the numerous kind thoughts and prayers. El.


Louise N's May 6 reply to Ruthie A's May 5, 1999 - Hi, My mother had CHF but she had high blood pressure and coronary artery disease and died at 80 of cancer. On the other hand, I have low blood pressure, idiopathic dilated cardiomyopathy and had my first bout with CHF at age 48, so I don't think my disease was inherited from my mother. In response to Jana's question about a thallium stress test and cardiomyopathy, I have had 2 thallium stress tests and am scheduled for another on June 3. I have cardiomyopathy and had no problems. In fact the first thallium stress test was the one that gave indication for an angiography (cardiac cath), which first diagnosed my condition. confuzed45@worldnet.att.net


Jon's May 6 reply to Roz' May 6, 1999 - Hi Roz, I don't know where the reporter got his specific info but I have a couple of Urls that may be of some use to you. Also be aware that the radial artery can be used instead of the brachial artery, both being arm or wrist caths. I hope this helps. Jon.
www.radialforce.org/
www.medhelp.org/perl6/cardio/archive/2365.html


Donna M's May 6 reply to Dennis F's May 4, 1999 - Hi, I'm a reader and second time poster. My mother is 81 and has had CHF for years. Her grandmother died from dropsy, which is what they called CHF in those days. I was diagnosed at age 51 but at this point in time, my CHF is controlled by drugs and I have very few symptoms, for which I am really grateful. If CHF is not directly hereditary, the predisposition for it may be. drmerry@home.com


Robin W, May 8, 1999 - Hi, I'm Jim, Robin's husband. Robin asked that I give everyone a quick update regarding her status. She went into the hospital on Monday, May 3. That morning, she had the right-heart cath done. The heart pressures were somewhat above the acceptable range so she was placed in CCU until the pressures could be managed. The pressures were brought under control with meds but some additional issues with her kidneys have since been identified. The doctors are still working on these. She moved out of the CCU late Wednesday evening and is now staying in the standard cardiac unit. This weekend I will be setting up a laptop at the hospital so that Robin can get back online. At that time I'm sure she will give everyone a better description of what is happening. jwilson@nb.com


Roger C's May 8 reply to Pam E's May 2, 1999 - Hi Pam, I sent Tom W an e-mail on 4/22/99 and got a response back from him the same day, saying he was just real busy. I have been home (Alabama) for a while for a family reunion, Decoration Day, fishing and general relaxing. I will be going in on the 25th to see my cardiologist and probably get set up for another cath. Y'all be well! Roger C. rdconnel@bellsouth.net


Pat D's May 8 reply to Jennifer's May 6, 1999 - Hi Jennifer, I have 5 children and was a single mother for part of that time, so I know first-hand how exhausting it is, even without the complication of CHF. Fortunately, I didn't have it when I was raising my children (they're all grown now). Since you're seeing your doctor on Tuesday, you should discuss this very serious issue with him and ask him to be frank with you. You are very blessed that your children have a father who is participating in their lives and willing to take over some of the burdens and still give you ready access to them. However, as a mother, I can well understand your hesitancy at letting them go to him. I think there are 2 important issues involved: will your health deteriorate more quickly if you continue being the primary caregiver, and will you be able to care for them adequately and fulfill their needs with your current health status? Again, your doctor can be an invaluable source of information in these matters. God bless you and help you make the right decision. I'd love to talk to you about it more personally, if you'd like. Pat. patj98@yahoo.com


Hope M's May 8 reply to Jennifer's May 6, 1999 - Hi Jennifer, I am married, 46 years old, have an artificial mitral valve and EF of 26%. I also have 6 children, ages 9, 13, 17, 21, 23 and 25. The first 5 are living at home, along with a one year old granddaughter. Having so many people around and the responsibilities that go with motheringm, even if it is just the many conversations that go on with so many people of so many ages, is very fatiguing but it also keeps me going and my spirits up. I must say though, that at times when they are all out of the house or asleep, I find myself breathing a sigh of relief. I recently quit my part-time job to reduce stress and I feel much better but it creates its own financial strains. As you go through the evaluation process about your children, you'll come up with what is best for you all. Trust yourself. When you reach a good decision, you'll experience a psychological boost. Hope. mcneils@ibm.net


Joy R, May 8, 1999 - Hi, I want to thank all the new friends I have on this site, who have helped me through some bad times. Today is one of the very bad days that I get at times. I'm sure most of us have them. My limbs are heavy and tingling, and my head is in the clouds. I have no energy and will only be able to sit up to type this and then go rest again. My chest is very heavy today and the aggravating shortness of breath is worse, and my fingers are swollen. So if I'm not on ICQ or Chat, this is why. I feel like I have a hospital in my bedroom anyway, with all the IV meds that I use but if I didn't have those available, I know I would be in the hospital this time. I hope everyone has a nice weekend and I'm keeping everyone in my prayers to be safe and well. Joy. wapalaremi@home.com


Roz S' May 8 reply to Jon's May 8, 1999 - Hi, Thank you again for the exact Url I needed. The Radialforce site not only was informative, but through it, I have been able to contact 2 highly respected cardiac facilities in the Philadelphia area who have passed beyond the "learning curve" in ability and eagerness to do the cath through wrist or arm arteries. If I am not able to get out of the cath entirely, I'll let you know what this procedure was like. To all my CHF buddies out there who are personally familiar with it, be good buddies and post your experience, will you? Rwarriston@aol.com


Sara, May 8, 1999 - Hi everyone, I had great news from my cath! My arteries were clear, kinked but clear. I have had several caths and this by far was the best care and procedure. First I had a private room, 2 nurses seemed to always be in attendance during preparation, inserting IV line, drawing blood, everyone coming to my room and explaining all that was going to be done, including the nurses, tech and one of the 2 cardiologist, also the "muscle man," the person who holds pressure at my cath site for 30 minutes. I had 2 cath procedures. I was pretty sedated; awake but couldn't care less what they did. I am allergic to dyes and the other new procedure was having a catheter, which was a blessing and saved me from having a bed pan every 20 minutes. All in all, everything went well until my BP started dropping and after 8 hours sinking into the mattress, I was helped up to walk around so they could send me home. My BP was 87/50 at that time. Well, I almost passed out, then the cath site started to bleed, so back with the sandbag for another hour.
     When my BP went down to 82/40, a lab was done per the resident doc. My blood count also dropped to 10 (normal is 12), so I was an overnight guest. I am on the same meds: 5mg Zestril, 200mg Cordarone, and aspirin. I am off Lanoxin and Lasix till they find out what is going on. The hardest part is staying put for 5 days and doing much of nothing for 3 weeks. I see the doc on the 17th and will find out more. I'm sorry to ramble on. I sure hope all of you are doing ok. El R, I'm happy that everything went well with you. Thanks to all. Sara. sunny20853@aol.com


Jon, May 8, 1999 - Hi everyone, I'll probably be offline May 17. Jon.


Sara's May 9 reply to Roz' May 8, 1999 - Hi Roz, Regarding arm caths, I had 2 done; the first was a little tense for me as they did a cutdown and afterward had stitches. The good part of an arm cath was not having to lie on my back so long. With my last cath, I wasn't able to lift my head or feet and had one flat pillow, so all in all, the arm was an easier recoup. Lots of luck, Sara. sunny20853@aol.com


Sara's May 9 reply to Joy R's May 8, 1999 - Hi Joy and Robin, My prayers are with you both and I hope by the time you read this post, you will be feeling better. I pray God gives you His love and strength. My best to you both and all of us with this old ticker problem. Keep smiling and God be with you all. Sara. sunny20853@aol.com


Sara, May 9, 1999 - Hi, Happy Mother's Day to all mothers. Here's hoping this day will bring love, peace and happiness to you. Best to all, Sara. sunny20853@aol.com


Lori P, May 9, 1999 - Hi, Has anyone heard of the home kit for Pro-time test? My doctor told me that they are due out soon and he wants me to buy one. I am to use it twice a week in addition to my regular Pro-time tests at the hospital. I can't seem to get any info on them. Thank you. Lori P. lpearson@cdsinet.net


Jennifer, May 9, 1999 - Hi everyone, Thanks for the posts and e-mail. All of the advice made a lot of sense and I will definitely address this issue with my doc on Tuesday. I was having a very bad day that day but since then, I have decided pretty much just to my best keeping primary custody. However, I will still ask my doctor the questions that you suggested, Pat. Thank you. Jon, what do you mean you will be offline on May 17? Jennifer. jbutler@randallpub.com
 
Jon's Note: I'll probably not be doing any e-mail or posts that day.


Rick's May 9 reply to LeeAnn D's May 4, 1999 - Hi LeeAnn, I am 60 years old with an injured left ventricle. Last June, my doctor added Coreg to my medications and recently when I had an echo, it showed my EF dropped from 35 to 23. At this time the Coreg is suspect so I have cut back from 50mg to 25mg and may cut back even more. I will have another echo in July and I will give you an update at that time. Keep up your courage and be positive. Rick in Kelso. rmdasher@kalama.com


Kim S, May 9, 1999 - Hi everyone, Thanks to everyone who responded concerning my SSD dilemma! I've discussed it with my doctor and he agrees that I should appeal the denial. He said that he will be more than happy to do whatever is needed for my case. I also received my echo results. My EF is still at 40% with no improvment since January but my heart has shrunk to normal size! My PPCM support group Web site is coming along beautifully! There are about 15 members and the message board is very active! Thanks to those who have helped me spread the word - John, Ginger and Lee. Have a great day! Lalakimmie@aol.com


Robin W, May 9, 1999 - Hi all from my deluxe accomodations at Club Med. I haven't gotten my new e-mail address yet and can still be reached at the old one for now. I went in Monday for a right heart cath, which showed my pulmonary pressures had gone up to 67/39. Normal is about 20/10. I had to go to the CCU as the Swan cath was left in, to measure my pressures as they tried different meds. The goal was to show the transplant surgeon that my pressures could be brought under control. If they could not be controlled, I would need lungs as well as a heart. Well, we got them down to an acceptable level and I was moved to the telemetry unit to wait for a heart. As my husband mentioned, they have found an abnormality in my kidneys and we are still waiting for word on that. I am on milrinone as well as all my regular meds. The one thing that keeps happening is that my blood pressure is going extremely low at night when I sleep. My normal is usually 90/60 and at night has been going as low as 54/27.
     Needless to say, that freaks out the nurses who then have to parade in one by one to take my pressure because they can't believe it. I don't feel weak or dizzy and if I sit up or get up and walk for a minute, it goes up a little. Has anyone else experienced this? Could it be from the milrinone? I have also met a really nice guy here in the same boat as us. His name is Jeff and he was just told 2 weeks ago that he needs a transplant. He had 3 massive heart attacks and didn't know it until he passed out 2 weeks ago. All of this is pretty new to him and he is very overwhelmed and depressed. I am trying to point him this way and hopefully I can give him my laptop to check out the site. If you guys could pray for him, it might help him to come to terms quicker. He is 39 and has two small children. Well, that's all for now. Talk to you soon. Robin W, age 31 and currently waiting in hospital for a heart. jwilson@nb.com


Jon's May 9 reply to Robin W's May 9, 1999 - Hi Robin, Milrinone is a potent vasodilator and can cause BP drop. See www.heartinfo.org/products/sanofi/primacor.htm for more info. Jon.


Brenda H, May 9, 1999 - Hi, I'm so glad to hear that a lot of you are improving. We got some devasating news Friday, that I am pregnant, and I'm so scared. I know my cardioligist said no more children, that it would be too hard on my heart. I never thought it could get any worse. In January, my EF was 25%. I had another one done Monday but when I called my doctor's office to get results, telling them how important it is now that I find out if my heart has improved, they said the echo has not been read and my doctor is out of town for 10 more days. I asked if someone else could do it. The nurse said she'd ask one of his partners but didn't know if they would. I'm so angry about that. Please pray for me. My baby is only 8 months old! Thanks, Brenda H. Brendakay@wa.freei.net


Debbie's May 9 reply to Joy R's May 8, 1999 - Hi Joy, My heart goes out to you. We all have those days or weeks. It sounds like Jon has been having a hard time as well. I promise to hold you both up in my prayers. This just reminds me of the story of Moses, that whenever his arms got tired while a battle was going on, they had to stand on either side of him and hold up his arms because whenever his arms would go down to his sides, the battle would not go in their favor. As long as his arms were being held up, the battle would go in their favor and as long as the people could see him on the mountain. I am sorry I have gone on a bit but I really think if we hold each other up in prayer, especially when we are weak or rather feeling weak, another of us could be the strong one and hold up arms (prayers) for the other(s). I think this is great that we have this forum to be able to share when we have a rotten day or we are just feeling rotten. Thanks to everyone. God bless. Debbie. Debbiedo55@aol.com


Bobby F, May 9, 1999 - Hi, Here's an Url that may be of interest, about organ donation, grief and more. www.geocities.com/SouthBeach/Lagoon/7768/index_1a.html Bobby. brasswood@greenvillenc.com


Patricia G, May 10, 1999 - Hi, I have not written in many months, I am sorry to say. I sincerely hope that all of you who are mothers had a wonderful Mother's Day. I did.
     I got an excellent report from an echo, saying my EF was normal and the cardiomyopathy was gone, in December. The new cardiologist told me to go off Lasix, Lanoxin and Coreg. In April, I had another echo. It said my heart was a little bit enlarged (I don't think it was in December) and my EF was now at 55. I know that this is not very far removed from my old echo but it is somewhat worse. I have a question for anyone who might have experienced similar circumstances. Should I ask the new cardiologist to put me back on the meds? Am I being too paranoid? What if the new doctor won't do it? Do I go back to the old one, who told me to continue taking the meds? Suggestions, especially through similar experiences, would be helpful.
     Also, my mother has now been diagnosed with DCM. She is 78. Our cardiologist was really surprised, or appeared to be, at least. Patrigil@excite.com


Al M, May 11, 1999 - Hi, Our Italian friend and cardiologist sent a few Urls to me and asked me to let others know. The first is a study talking about beta-blockers. Of particular interest is a table that shows "Which patients with congestive heart failure are suitable for beta-blocker treatment" and "Which patients are less likely to benefit." www.heartjnl.com/cgi/content/full/81/5/453. The second is "Prevention of Relapse of CHF" at www.heartjnl.com/cgi/content/full/80/5/432. There are 2 on Heart Failure Clinics: www.heartjnl.com/cgi/content/full/80/5/426 and www.heartjnl.com/cgi/content/full/80/5/428. The last is one on "Nurse-led Intervention in CHF treatment" at http://www.heartjnl.com/cgi/content/full/80/5/430. So those of you "information freaks," you have some reading material.
     I wish you all good health. Incidentally, I mentioned in a previous post that I planned on playing golf. I did and it was wonderful. I didn't need a gurney or oxygen and I enjoyed myself tremendously. At one point (actually a very long point) in my life, I was a very serious golfer. This CHF thing had pretty well taken that away for over 3 years. It was so mentally beneficial that I am now convinced I am going to spend a lot more time trying to find out what I can do than spend time fretting about what I can't do or someone tells me I might not be able to do. Of course, I am going to listen but I'm going to do the deciding. Good health to you all. Al M (TexAl in the chat room). ajmiii@web-access.net


Phyllis A, May 11, 1999 - Hi, I'm a first time poster. I would like to take this time to say I really am happy to have found this site. I need to hear from others who have the same disease. I have cardiomyopathy and congestive heart failure and an enlarged heart. I was diagnosed at 46 years old after going to the ER with severe SOB and chest pain. I also have asthma but I don't know if it's really asthma or, as I read, due to my heart conditon and just misdiagnosed. I can't lose weight because I'm constantly retaining fluids, even when I take extra diuretics, most of the time I still retain fluid. My belly is usually swollen. I just deal with it but would love to hear from others going through same thing. Thanks. Phylcasurv@msn.com


Pati F, May 11, 1999 - Hi all, I'm just catching up on the posts. I probably shouldn't have posted on the 5th until I had seen my new docs. I have learned so much since then through this site and even from my docs! My cardiologist wants a list of the sites I have found helpful. Now that I am clear on EF rate, I've found that mine is not 38 like I had been told, it is 20, which explains a lot about why I feel the way I do! In 2 weeks I'll start the beta-blocker. I'll have to read up on that. They'll start me on Coreg. The doc also increased most of my drugs as my blood pressure was elevated. I seem to be very confused at times. It gets pretty scary if I am driving! Thanks to everyone who e-mailed me with advice. This is all so new and frightening. Pati. StellaO2@aol.com


Paul M, May 11, 1999 - Hi, It is with deep regret that I must inform you Milo has decided to no longer participate in this forum at Jon's Place. His reasons are personal. He has requested that I send him nothing further from Jon's Place. Effective 5/15, I will no longer be forwarding any e-mails to him as this will be my last general mailing to him. This mailing will be very brief and short. He will be missed by many. I wish Milo all the luck in he world in his quest to maintain satisfactory health. paulmcferrin@worldnet.att.net


Ginger's May 11 reply to Patricia's May 10, 1999 - Hiya Pat, When my heart size went back down to normal and my EF to normal range, they kept me on an ACE inhibitor. I still am on it and am also on a diuretic to keep my BP down. My doc said I would always take an Ace inhibitor. So that is all I can tell you. I hope this helps some. Hugs, Ginger. mystery@laker.net


Ginger's May 11 reply to Phyllis' May 10, 1999 - Hi Phyllis, You have come to the right place. Most of us here have cardiomyopathy and CHF and an enlarged heart. Just read the pages here and read some of the bios on the Who's Who page and you will see. We also have Chat 3 times a week. It is an easy way to meet some of the people here. I am sorry to those who have been in chat the last few times and I wasn't. My step-father had a heart attack a few days ago and I have been pretty busy with that. He is doing a little better. If he stays stable, I plan on resuming Chat Saturday night. I am sure he could use any prayers you all have. Thanks! Hugs, Ginger. mystery@laker.net


Lori P, May 11, 1999 - Hi, Oh my, As if we haven't been through enough lately with the wedding and valve surgery, today we found out I'm pregnant. I see my cardiologist tomorrow. Have any of you had experiences with pregnancy after surgery? Yikes! lpearson@cdsinet.net


Roger C's May 12 reply to Lori P's May 9, 1999 - Hi Lori, I have and use one of the 2 home test kits that are on the market. It is the ProTime Microcoagulation System made by International Technidyne Corporation, Catalog # L11-01-01. For more information call 1-800-298-4515. They sent me the newest version just a couple weeks ago. The one I have does not have to be recalibrated before each use. Be well. Roger C. rdconnel@bellsouth.net


John Bott, May 12, 1999 - Hi, I just got my cholesterol and triglyceride readings back after 2 months on a high protein, low carb diet. My 1998 cholesterol was 238 and it rose to 246. My 1998 triglycerides were 268 and now have dropped to 255. This is not as bad as one would think after 2 months of ribeye steak, bacon, cheese, eggs, and spare ribs. My blood sugar after fasting is rarely over 100 and usually down around 80. During the day my high measure has been at 135 with an average of 100-115. This is after cutting my diabetes meds in half. I am now going to try to reduce the amount of fat, and the portion size and see if I can get the other stuff in line but I think the diet has not significantly affected my cholesterol and triglycerides. If all my testing came out ok, Friday I will begin taking the new med from SmithKline Beecham. I will keep you informed. jbott4015@aol.com
 
Jon's Note: Uh, if you are eating bacon and cheese, you are setting yourself up for problems. One strip of bacon is about equal to a whole day's allowance of sodium!


Phyllis A's May 12 reply to Ginger's May 11, 1999 - Hi, Thanks to Ginger for responding to my post. I am happy to be here with other CHF patients. I am in remission from breast cancer and I have been for 5 years. Praise God. I was diagnosed with CHF in March of 1997,after being rushed to an ER with severe shortness of breath, my husband and I thinking it was my asthma. I was in a CCU for 5 days and after all the tests, I was told I have the same disease that killed Hank Gathers, a young basketball player who dropped dead on the court and he never knew he had it. I was thankful I got there in time. My oncologist won't admit that it was caused by chemo and radiation treatment, plus I got a bad viral infection after my body rejected the implant that was put in after my mastectomy. Another cancer survivor in my cancer chat also is going through the same thing. I just read on the Internet about a doctor who believes the treatments do cause damage to the heart. Anyone who can give me info on this, please e-mail me or post. Thanks. phylcasurv@msn.com


Brenda H, May 12, 1999 - Hi, I want to thank all of you for your prayers and support through this tough time. I got a call from the high risk OB I saw and she got the results of my echo. Unfortunately my heart has not improved and my EF is still at 25%. She says there is no chance I would make it. Brenda H. Brendakay@wa.freei.net


Robin W, May 12, 1999 - Hi all, I just wanted to keep you all informed. My kidney tests came back fine and everyone thinks it is just the CHF that is keeping them suppressed. At least that is one more thing we don't have to worry about. Also, the doctors have received 2 back-up calls for a heart for me already, one on Saturday and one Tuesday. This means I am near the top of the list and I might get a heart in only a couple of weeks or so. We are optimistic that it might be this week. Cross your fingers and pray. Robin W. jwilson@nb.com


Ann C, May 12, 1999 - Hi, My question pertains to an echocardiogram report I got when I requested my records from my old cardiologist. I do not understand how to read them. I know what EF means but when I compared the measurements from my old echo done in 12/97 to the most recent one, done in 7/98, the heart measurement numbers have increased, but the doctor stated there was no significant change. How can this be when my EF went down 4% and the heart measurements are larger than before? Also, what is the difference between mild, minimal and moderate mean? I am not asking medical advice, I just want to know if there is anyone that can tell me what I need to look for and what numbers on the echo are important in cardiomyopathy cases. This disease is not new to me, but understanding it is. Thank you for all being here for support. dacadcannann@yahoo.com


Greg Friend, May 12, 1999 - Hi, I'm a 50 year old male who has had CHF for 6 years. My EF is 25-30 and I have been on a medical leave of absence since June of 1998. Does anyone have any experience with Social Security Disability or should I not waste my time applying? Riverrats@altavista.net


Sara's May 13 reply to Ann C's May 12, 1999 - Hi Ann, I have had the same problem with records saying one thing and the doctors telling you something else. I was told my Holter monitor had no significate change and I could go off Norpace 400mg daily for arrhythmia. That was in December of 1998 as I complained of shortness of breath (crawling on hands and feet going up steps) and being dizzy. Well, in February of 1999, I got worse and went to another doctor and I was diagnosed by an echo-stress test with CHF and DCM and an EF of 25%. I can't begin to tell you how angry I was at my doctors, whom I liked and trusted, but my new doctor said "forget the past, deal with today and let's get you feeling better" so that's what I am trying to do. I am now waiting to get a final report from my cath after being on Zestril, amiodarone, Lasix, aspirin and Lanoxin. Good luck. Sara. sunny20853@aol.com


Phylis A's May 13 reply to Greg F's May 12, 1999 - Hi Greg, I live in Pennsylvania. Where do you live? I was on Disability during cancer treatments and then I went back to work in 1995. In 1997 I started having symptoms and was diagnosed in 1997. I also have asthma, which complicates everything. My doctors put me on a leave of absence for 6 months but I only got worse and could not hold down my job anymore so they helped me to apply for SSD and I have been on it since. I think it would be to your advantage to talk to your doctor and see what he says because he has to fill out papers also. I hope I helped. phylcasurv@msn.com


Claudia S, May 13, 1999 - Hi, I have just been told I have cardiomyopathy and congestive heart failure. I saw the cardiologist tonight. He wants to do an angiogram. I don't see that in the CHF tests or is that the same as a cath? I am wondering what is the dye they use, as I am allergic to iodine. I also would like to hear from someone who may have had this test done recently. I was told now at the cath site they use a plug instead of pressure and lying flat for 6 hours is not necessary. I am 52, with diabetes, asthma, hypothyroid and now heart failure. I am scared but this is all very new to me. My EF is 15% according to my echocardiogram. I take, Lasix, potassium, levoxyl, premarin, pamelor, gluchophage, and vitamin E. I have read The Manual, and nearly everything else on this board. It seems to be a wonderful place to get support and good information. CMSchm@aol.com


Karen P's May 13 reply to Greg F's May 12, 1999 - Hi Greg, I heard tons of horror stories about the struggle to get SSD, however my husband just got approved for full benefits within 6 weeks of applying. Benefits should begin in September of 1999. He is 58 and was diagnosed with CHF in 9/98. He presently has an EF of about 20%. Last fall, he had a mitral valve replacement and 2 bypasses. He had an MI 20 years ago followed by quadrupal bypass, then angioplasty 10 years ago. He had to leave his job as division director of the college this spring and retire early. He tried to go back to work but couldn't handle it. I did go through Jon's links to SSD before we filled out any forms to familiarize us with their language, what they look for, how they define things, etc. Also, we asked his doctor if he would support this effort and he agreed. No attorney was involved in our case. Go for it! Karen. phillik@televar.com


Bill D's May 13 reply to Roger C's May 12, 1999 - Hey Roger, What do those ProTime Microcoagulation Systems cost? I heard about $3,000 bucks! Bill D. billdog@gate.net


Paul M's May 13 reply to John Bott's May 12, 1999 - Hi John, Triglycerides go hand in hand with blood sugar control. The better control you have in your sugar levels, the lower your triglycerides. With your low carbohydrate diet and better sugar control, it is a win situation for your triglycerides. I'm amazed by the good things I'm hearing from reputable doctors about the high protein/low carbohydrate diet. My sister's GP doctor the other day said he has several diabetic patients who are on this diet and are now off insulin. He admits not understanding all the mechanisms at work but he is seeing that it is working. When I went to diabetic diet counseling 4 years ago, the current trend was to control the amount of carbohydrates consumed while limiting total calories from protein sources to 15% of total caloric intake. This was supposedly to place less load on your kidneys, which have a tendency to be problematic with long-term diabetes. Go figure! Is the medical profession wonderful and confusing at the same time? <G> paulmcferrin@worldnet.att.net


Paul M's May 13 reply to Greg F's May 12, 1999 - Hi Greg, Check out Jon's link to SSD information page here. If you have any idea that you will not be able to work again, then you owe it to yourself to apply to get what is coming to you. The whole process varies from state to state and is usually a long and dragged out experience. It is not unusual to get rejected 1 to 3 times. Jon's SSD page has lots of good information and advice. I strongly suggest getting a lawyer who specializes in SSD claims. Their fee is limited by law to 25% of your first check. The longer this process gets dragged out, the bigger your first check usually is, thus the more money the lawyer gets. We have seen some people get SSD approved on their first attempt. It does happen but not as frequently as it should. Hey it's our money! paulmcferrin@worldnet.att.net


John Len's May 13 reply to Greg F's May 12, 1999 - Hi Greg, Go to the site index and read the section under Social Security Disability. Yes, it pays to check into it. I did not have any problems getting on it at 48 years old but others needed a lawyer. Many lawyers will take a case on consignment. In any case, get started early. Read some of the old posts on the subject also. John. a_lenny6@hotmail.com


Robert Harmon, May 13, 1999 - Hi, I have been diagnosed with a valve problem, aortic stenosis of about 50%. I also 10,000 PVC's in a 24 hour period. I am a youth correctional counselor for California youth authority. I have a question. In the performance of my duties, sometimes I have to become physical with the inmates, such as restraining them or even wrestling with them to break up fights. With my heart condition, is it ok to return to my job? Robert. rlharmon@jps.net


Christine, May 13, 1999 - Hi, I just got back online today. I have been down with some type of bug. I have a low grade fever and a I just want to stay in bed. It seems to have hit sunny Hawaii now, but I took the time to catch up on some reading. I noticed that taking Vitamin E is good for you, especially for people like me, a diabetic. Well, it seems I was getting an overload that gave me this feeling of being under. I discontinued the extra E I was taking with my multi-vitamin and believe me, I am back to normal. So take care and read much before you embark on any new venture with your vitamins.
     I had a thallium stress test, which I believe gave reason for me to undergo an angiogram. They may be able to do surgery. I say the word "may" in view of my genetic problems of small arteries and veins along with being a diabetic. The risks are greater than the good things promised. I was also told by my doctors that when they saw my results from the 1994 angiogram and told me there was no option at the time, they actually gave me 2 years to live in their assessment, but because I went on a very strict vegetarian diet with absolutely no fat and underwent chelation, they have agreed that I am still around due to this type of treatment and are now recommending I continue this. About a year ago, I also learned about another treatment called Plaquex which is actually a product of soy lecithin that is infused in you. Some believe it has helped people like me with clogged arteries. I have had a couple of treatments and feel wonderful but a word of caution, seek a certified doctor to administer this type of treatment since there are mills out there just to make a quick buck. You can e-mail me for more information. I went for another chelation treatment today and I feel good. I now have 3 plaquex treatments to be followed by another chelation. I am not trying to get you to seek this treatment but thought I would share this with you folks.
     Take care and God bless. I will mention you all in my prayers since I am nowhere near what you folks are going through but I must remember God has a plan for everything and a time appointed for it. Aloha. Chrisd1950@aol.com


Jon's May 13 reply to Ann C's May 12, 1999 - Hi Ann, There is a margin of error for any test which measures heart function. My cardiologist views this as +/-8% for echocardiograms. Technician skill, doctor's experience reading results, software and hardware enter into it as well as the inherent limitations in a non-invasive test. That means your EF may be exactly the same as last time, or even a tad higher. Also, EFs can change from day to day. If you see a downward trend across several echos, your EF is probably decreasing even if within the margin of error but otherwise, 4% is literally nothing to worry about. The heart measurements are also a matter of degree. It depends on how much they have changed as to whether they are significant changes or not. I e-mailed my doc with some questions for you and will let you know if I get an answer. Jon.


Jon's May 13 reply to Claudia S' May 13, 1999 - Hi Claudia, Welcome to Jon's Place. You bring up a good point. I should have written on the Cath page that it is also called an angiogram! They are one and the same, although a cath can be done for different purposes. The one I describe on my cath page is a diagnostic cath or angiogram. A cath "seal" can be used and info can be found here about one version. I gotta tell you though, that I had a cath 4 1/2 years ago and I didn't have to lie flat for 6 hours then. It really depends on how "forward thinking" your hospital staff is. <g> Jon.


Sara's May 14 reply to Claudia S' May 13, 1999 - Hi Claudia, Jon has already answered you about angiogram and cath being the same. As far as being allergic to dyes, if the doctors are properly informed, you will be given an IV with steriods, benydrl and a sedative. I was pre-medicated at home, the morning of my cath and most of that day, since I go into anaphalactic shock. You might have a headache due to the dye but at least your allergy will be controlled. Sometimes when the term cath is used, it means the doctors will do a left and right cath, which takes a little longer then just an angiogram. All my caths have been 8 hours lying still. There is a "plug" that stays in for 2 hours, then pressure by hand when it is removed, then the sandbag for then next 6 hours but since there are several methods, discuss this with your doctor and be sure you are completely satisfied. It's your body and you need to be comfortable with any procedure. Best to you. Sara. sunny20853@aol.com


Jan ?, May 14, 1999 - Hello to all, I went in a few weeks ago for a stress echo. My resting echo had an EF of 35-40%. The stress part had to be stopped after 4 minutes because my BP went up and I felt I was about to faint. They proceeded with the after stress echo, which showed an EF of 40-45%, they think! My LBBB gave them some problems so it was to be calculated. My doctor's PA, told me they put it at 40% and but will redo it after they get my BP under control. Last year about this time, it was 45% and I went on several different drugs, including Coreg. I had a hard time trying to work. I didn't feel like doing much of anything. In August, I had a cath and my EF was 52%, which is almost normal. What I need is to understand this numbers game. I started treatment in 1991. I was told initially that I had a very weak heart and that I had cardiomyopathy and that I should schedule a conference to talk with the doctor if I had any questions. I started on Lanoxin and Prinivil that same day. On my return visit, I was told that they reviewed my echo and my condition was not as bad as they thought, and that I had mild cardiomyopathy. Recently, I found out that my EF then was 55%. Which brings me to this, what could have happened for me to dip into the 30s after taking a wonder drug like Coreg? Or maybe they were right the first time. I have never had a second opinion but I feel I am open to it now. Presently, I am on 50mg Cozaar twice a day, 50mg Maxzide, 0.2mg Clonidine, 6.25mg Coreg twice a day and 0.25mg Lanoxin. I am on Disability until sometime in July to allow for adjustment to medications. They have already changed 3 times in 3 weeks. I don't feel good at all plus I am depressed. jancur@bellsouth.net


Melissa, May 14, 1999 - Hi, I was told back in January that I have CHF. I was also told that it's rare for someone my age to have this. I am only 18 years old and just graduated from high school. I was told my heart is enlarged and that my heart only works at 20%. I was told that a virus caused this and it was nothing that I had done. I have had to quit my job and put my college plans aside, needless to say that this broke my heart but I am dealing with it. My doctors want me to claim Disability. I already have a handicapped sticker. I feel wierd having one at this age. All my friends think it's cool or something that I get great parking at the mall but it makes me sad. I am an overweight teen and was told that losing weight was a life or death matter. So far I am doing ok but I need more support and guidance than both my parents can give on their own. I was told the other day that my parents insurance would cover me until I am 26 due to the fact that I am totally disabled. To be honest, I feel robbed of my future. I hate myself and wish that I could wake up and this all be a dream but I know that I can't run from the fact that this is all happening. I am supposed to start a program for weight loss soon at an area hospital. I hope this program can help me lose weight because I was told that I will need a transplant in the near future and they won't consider me or even look at me until my weight is lost.
     I hate my medication with a passion. I am on 25mg Coreg twice a day, 80mg Lasix twice a day, 0.25mg lanoxin and 40mg Zestril. I wake up feeling fine. I get up, then I get dizzy and I feel sick to my stomach, not to mention tired. I also was told that I have sleep apnea so I have to sleep with a c-pap due to that. The reason I am sending this post is because I need friends and maybe someone my age who knows what I am going through. Please help! moelissa@hotmail.com


Gatha E, May 14, 1999 - Hello everyone, Thanks so much for your prayers and support. I am okay now, the nerves are gone. I got approved for SSD this morning after 45 minutes of questions. My lawyer didn't have to say a word nor my husband, who was also present. As we were getting ready to leave, the judge said that she was reversing the prevous decisions. All I know for sure is this wouldn't haven't happened without that lawyer present. It's been 12 months so far and maybe 6 more before payment happens. People, listen to Jon's Social Security Disability advice, it really works. If not the first time, keep trying! jell855859@aol.com


Gary M, May 14, 1999 - Hi, I am a CHFer and on a low salt diet. Lately I have been having a salty taste in my mouth. Does this mean anything or is my mind just playing tricks on me? toriclown@aol.com


Ruthie A, May 14, 1999 - Hi, Well, I just got back from 3 days in Nashville. It was very tiring because I am struggling with extra fluid. Even the doctor was not pleased. My liver is swollen to twice its normal size and is quite painful so we are playing around with my Lasix to see if we can find some balance. I am struggling with either too much fluid, resulting in severe dehydration or too little, resulting in swelling, SOB and super-fatigue. I can't seem to find that middle ground. My BP is up and down too, so we are juggling medication timing to see if my metabolism rate makes a difference. I guess I'm giving my doctor a challenge! <g> I have also developed medial nerve inflamation in my wrist involving, among other areas, the carpal tunnel. It is extremely painful and the best treatment is cortisone. Unfortunately, that stuff puts a strain on the old ticker and causes more than its share of swelling. So I have to struggle with Tylox (tylenol and codeine) for the pain and a wrist splint. I will need to wear that thing for several weeks so I do not bend my wrist while the nerve is healing. Funny how little one can do with only one good hand! Welcome to the newbies. There is a lot of information here, as well as support. Post often. We need you. Ruthie A. rlaba@preferred.com


Jon's May 14 reply to Ann C's May 12, 1999 - Hi Ann, My CHF doc gave me what he considers "normal" sizes for the heart. "The left ventricle is generally considered normal if less than 5.7cm front to back, and the left atrium at 4.0cm. For people whose body size is unusual, these generalities may not be accurate. The mild, moderate and severe gradations are totally subjective." I hope it helps. Jon.


Jamie, May 15, 1999 - Hello everyone, Thursday night I got to meet Robin W. It was exciting for me. She is a sweet, wonderful and charming woman. If you would like her current address, it is:
Robin Van Pelt Wilson
c/o Robert W. Johnson Hospital
1 Robert W. Johnson Drive
Room# 405
New Brunswick, New Jersey 08901
     Keep up the great work, Robin. You are an inspiration beyond words. Jamie. JamieDan@prodigy.net


Linda O's May 15 reply to Melissa's May 14, 1999 - Hi Melissa, I am so glad you found this forum. I understand your feelings. I think we all have felt the way you feel right now. Please try really hard to do as your doctor tells you and go for the diet class and show yourself that you can do it. Remember we are all in the same boat and are here for you. Vent your feelings, regardless of how down you are. We are praying for you and will try to do our best to help you. Eighteen is so very young to have any disease. Read all the info on this site and you will be surprised what you can learn to help yourself and your parents to understand the disease process. Linda O. norvalo@clarinda.heartland.net


Libby, May 15, 1999 - Hi, I have been diagnosed with a slightly enlarged heart and an abnormal amount of pressure inside it, through a heart cath. I was sent home without even knowing the formal name of the condition, cardiomyopathy. Much to my surprise, I found out through television that mine is a serious condition. I see the heart doctor again for my yearly check-up in July. I have so many symptoms I am worried about being able to get a good doctor. I am a single mom and am graduating with my bachelor's degree next June. I have worked so hard to get it. In this, my last year, I am finding it hard to walk across the floor and still be able to get a good breath of air. I also have gained an unusual amount of weight for me and my body is so disproportioned, I look as if I am 9 months pregnant. My doctor saw no need to see me any sooner than the once a year appointment already scheduled. I was desperate and just typed cardiomyopathy in at Yahoo search and found this site. I really need to know that I am not imagining the symptoms. Sometimes my doctor makes me feel like a big cry baby and I wish he could feel like I do for just one day! Although you can't help with that, I would like to share with someone who feels like I do just for a little encouragement. Thanks. Libby_007@hotmail.com


Robin W's May 15 reply to Phyllis A's May 12, 1999 - Hi Phyllis, In response to your question about chemo causing heart problems, there are several of us here who have chemo related CHF. This is most often caused by a drug named Adriamycin. It is known to cause CHF in some patients. This was explained to me and most of us at the time but what choice do you have, die of cancer or live and deal with the associated problems as they occur? Hang in there, it's frustrating but hopefully everything works out in the long run. Robin W, age 31. jwilson@nb.com


Pat D's May 15 reply to Claudia S' May 13, 1999 - Hi Claudia, An angiogram and a catheterization are the same thing. Sometimes you only have a left heart cath and sometimes only a right heart cath, and occasionally they do both sides. To determine your heart and pulmonary pressures, it's necessary to have a right heart cath. I am also allergic to iodine but I've had several procedures since developing the allergy. I always tell my doctor and all personnel involved, and they give me Benadryl for a couple of days before the procedure and I've never had any problems with it. I believe steroids can achieve the same thing, although I'm not sure of that. If you are having a right heart cath only, no dye is used. Good luck and let us know how it turns out. If you'd like to e-mail, my address is in this note. Pat. patj98@yahoo.com


Pat D's May 15 reply to Robert H's May 13, 1999 - Hi Robert, I don't think anyone on the board can really give you a definite answer to your question about working with your condition with such limited information and us not being doctors. You need to discuss it with your doctor, who has all your records and the information necessary to make that decision. It does sound like a very stressful career and you're right to be concerned. Generally, stress is very bad for anyone with heart failure so please, for your sake, check into this before returning to work. You may find a new career would help you to live a more normal and longer life. Pat. patj98@yahoo.com


Pat D's May 15 reply to Melissa's May 14, 1999 - Hi Melissa, I'm not your age but my heart went out to you when I read your post. You have a tremendous burden to carry at such a young age. I'm so glad you found this web site. Please keep coming back and communicating, it can make a world of difference. It feels good to know you're not alone. Meds can be a real pain but without them, you would decline much more quickly. It's important to stay as healthy as possible, so you'll be able to get a new heart when one becomes available to you. Because of your youth, there's every reason to believe you're a prime candidate and will do very well after transplant. If you would like to e-mail me, I'd love to be your friend and give you whatever support I can. Even though we're from different generations, we share a disease and that creates an automatic bond. We also share dealing with a weight problem. Good luck with your weight loss efforts. I've been working on my weight for awhile and have lost about 40 pounds. So far, I've kept it off. We can talk about it through e-mail if you'd like. Pat. patj98@yahoo.com


Robin W, May 15, 1999 - Hi all, I'm just keeping everyone updated. I am still waiting but am not going crazy yet. Jamie S lives nearby and came to visit last night. It's nice to finally get a face to associate with the posts. The other transplant patient here, Jeff, went into V-tach this morning and had to be moved to the CCU. He was not happy! Hopefully, he will come back to this floor in a few days. I keep getting encouraging news that it won't be much longer but in the end, no one really knows. I'll talk to you soon, and thanks for all the e-mails and support. Robin W, in hospital waiting for transplant. jwilson@nb.com


Joy R's May 15 reply to Melissa's May 14, 1999 - Hi Melissa, I'm not 18 but can only imagine how you feel. No one wants to be sick and disabled. Sometimes it's really hard to adjust to being sick. You have found this site, which is a good beginning since it is full of support and information. My prayers will be with you. Joy R. wapalaremi@home.com


Ben B's May 15 reply to Jan ?'s May 14, 1999 - Hi, I think cath is the most accurate measurement, so if you had a measurement of 45% in May and it went up to 52%, that's improvement. Personally, I am coming to the conclusion that measurements of EF which don't vary by 15% or more really don't mean all that much. Look how your measurement changed by 5 to 10% with exercise. Plus, you have near normal EF and are very tired, and there are people with EFs of 10 to 15% who feel fine! Mine has varied from 10 to 35% over the course of a year and I feel exactly the same. I am a person who normally loves numbers but this one just doesn't seem to mean anything, except when looking for big trends. bdbrinkman@juno.com


Anne C, May 15, 1999 - Hi everyone, I'm new at this DCM thing and reading all the info on these posts has really helped. Thanks for the much needed info on my condition. I've read everything I can get my hands on. I'm 59 and have never been sick a day in my life. I thought I was so tired just because I was getting older. They found my problem while I was having an EKG for an unrelated procedure. I am on 10mg Lipitor, 5/20mg Lotrel once a day, and 3.125mg Coreg twice a day. I just started taking the second dose of Coreg 3 days ago and am feeling very tired and out of it. My doctor also has me on a long list of supplements; B100 Complex, 1g vitamin C twice a day 400IU vitamin E twice a day, one gram L-arginine twice a day, 50mg CoQ10 twice a day and one gram Niacin Inositol Hexanicotinate twice a day. This seems over the top to me. Any comments from anyone on these supplements? Thanks for the good read. Anne. Achitw4617@aol.com


Bruce S' May 15 reply to Melissa's May 14, 1999 - Hi Melissa, I was told I had CHF in December of 1997 because of a virus. I also am a little overweight, by 120lbs. You are taking almost the same meds I was taking; 50mg Coreg twice a day, 80mg Lasix twice a day and 10mg Zestril twice day. I know about the dizziness, lightheadness and sick feelings but I was 41 at the time. I never let myself stop even walking to the mail box would kill me, trying to work for a minute and breathe for a minute to catch my breath. The first 6 months were hard but they did get better and easier. I did get back to the golf course. My score has not improved but I can play all day if I want. You are a very young woman to have no hope and I believe it will be slow but you can improve. Today, I could not run a track but maybe a very short distance but I could walk all day. The doctors told me a couple of weeks ago I had returned to normal. It doesn't happen overnight but you can improve and the first thing to remember is that you can't feel bad about yourself. You are not junk, because God doesn't make junk. Also, I prayed a lot and others did too. I will thank the doctors but I will give God all the praise and glory for my recovery. Melissa, I hope this will help you and God bless you. baspencer@rtelco.net


Roger ?, May 15, 1999 - Hi, I had a massive heart attack January 23, 1999. Since then, I have developed an enlarged heart and they put me on a heart transplant list. They say I am a good candidate for a high risk left ventricular aneurysmectomy but I have searched the Web and cannot find anyone who has had this operation or any stats on it. I feel quite good right now and have even returned to half days at work. I am desperate for some info. Thanks. Roger. lfeniuk@magnet.com


Tracy M, May 15, 1999 - Hi, Tonight I attempted suicide - a bag of corn chips and bean dip. I can't seem to get my eating under control. I have an appointment at the University of Michigan CHF program on the 25th and I think (I'm too afraid to get on the scale) that I've gained weight. I seem to find my self control at an all time low. Please pray for me. I've got to find some help for my eating disorder. tsmadden@cpuinc.net


Roger C's May 15 reply to Bill D's May 13, 1999 - Hi Bill D, There are 2 ProTime Microcoagulation Systems being made that I know of. The one I have cost me $2,000 and does not have to be calibrated before each use. There is one made by another company that cost $1400 but has to be calibrated before each use. You have to go to their training classes before you receive your system. Insurance will usually pay if you have a perscription saying you need to test weekly. Be well! rdconnel@bellsouth.net


Jon's May 15 reply to Roger ?'s May 15, 1999 - Hi Roger, There are articles about this surgery in Medline. You can also ask at the other heart forums listed on my Links page. I hope this helps. Jon.


Doris R, May 15, 1999 - Hello friends, It's been about a month or so since my last post. This is only my second post. I am the "There Is No Mayo Clinic Diet" Doris. Thank you Jack, for that fine bit of direction. I am watching what I eat now. I've lost 8 of the 50lbs I need to lose. I have been on 25mg Coreg twice a day for about 6 months now. On May 26th, I am going to have an echocardiogram. Before the meds, my EF was 10%. It is my hope that my EF is at least 40%-50%. Is that realistic? I know I feel better since starting Coreg. I want full recovery from Coreg! That's saying a lot because at first, I didn't think I would be able to take 25mg. It made me feel so sick and crazy! Now, so long as I eat before I take it, I am fine. Otherwise it causes severe chest pains. In other areas of my life, I was disapproved for the first time by Social Security. They say I am not sick enough. I know I must file for a hearing but is it attorney time? Or, should I file first and then seek help? Thank you all. I can't make a move without you. RoughGoing@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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