The paperwork never ends The Archives
March 16-31, 2002 Archive Index CHFpatients.com

Derald 3-16     current decisions & future consequences - questions
 
Henry T 3-16     seek amiodarone & Coumadin experiences
 
Brandy 3-16     disconnected feeling - anyone else?
 
Jim T's 3-16 reply to Norma's 3-13     us old old-timers
 
Joy R 3-16     Coreg & body aches - anyone else?
 
Jon's 3-16 reply to Joy R's 3-16     Coreg & body aches
 
Joe S 3-16     after heart surgery, how to cope with chest pain?
 
Diane P 3-16     low blood pressure and pulse questions
 
Tom S' 3-16 reply to Henry T's 3-16     Coumadin and Coreg experience
 
Jack D's 3-16 reply to Brandy's 3-16     getting stoned on meds
 
Ruthie A's 3-18 reply to Jack D's 3-16     neurontin
 
Rob P 3-18     painful chest wall spasms - anyone else?
 
Tom S 3-18     home protime testing
 
Karen F's 3-18 reply to Joe S' 3-16     after valve surgery chest pain
 
Vee's 3-18 reply to Brandy's 3-16     that spaced out feeling and meds
 
Wendy 3-18     can a meds mix-up worsen CHF?
 
Gayle's 3-18 reply to Joy R's 3-16     statin drugs can make body ache
 
Karen K's 3-18 reply to Wendy's 3-18     checking our Rx meds before taking
 
Linda Oline 3-18     does anyone know about this surgery?
 
Derald's 3-18 reply to Jon's 3-16     foot pain experience
 
Jon's 3-18 reply to Derald's 3-18     foot pain
 
Shelby H's 3-18 reply to Wendy's 3-18     drugs one might avoid with CHF
 
Janet T B's 3--18 reply to Shelby H's 3-13     coping
 
Peggy's 3-18 reply to Henry T's 3-16     Coumadin and amiodarone experience
 
Raya 3-19     could pain be a drug side effect?
 
David A 3-20     flying with oxygen
 
Jon 3-20     BNP test results unit of measure
 
Bob 3-20     do I need a second opinion?
 
Jon's 3-20 reply to Bob's 3-20     yes
 
Pat L's 3-20 reply to Rob P's 3-18     non-heart chest pain
 
Joan 3-20     seek high blood pressure advice
 
Dudley 3-21     seek CHF doc in Thousand Oaks
 
Charles' 3-21 reply to Norma's 3-13     old-timer walking on needles right now
 
Joseph P's 3-21 reply to Raya's 3-19     NSAIDS and CHF
 
Jon's 3-21 reply to Joseph P's 3-21     NSAIDS and heart failure
 
Herbert L's 3-21 reply to Bob's 3-20     not such a bad trip
 
Joanne Kaysar 3-22     SS Disability finally approved
 
Tommie 3-22     is anyone else in this situation?
 
Jon's 3-22 reply to Tommie's 3-22     I think lots of us are
 
Joy's 3-22 reply to Raya's 3-19     Coreg, NSAIDs, aches & more
 
Jon's 3-22 reply to Joy's 3-22     Coreg's approval date
 
Raya 3-22     that should read 1997
 
Liz 3-22     should I take Zyprexa?
 
Jon's 3-22 reply to Liz' 3-22     Zyprexa
 
Liz 3-22     whoa! I am in shock!
 
Herbert L 3-22     check out the other side, please & more
 
Fred D 3-23     why do common illnesses knock us down so hard?
 
Jon's 3-23 reply to Fred D's 3-23     common illnesses knocking us down
 
Ralph H's 3-23 reply to Nancy B's 3-14     beta-blocker dose, stress & more
 
Jon's 3-23 reply to Ralph H's 3-23     beta-blockers
 
Don C's 3-23 reply to Dudley's 3-21     CHF doc suggestion
 
Shelby H's 3-23 reply to Liz' 3-22     meds doctors prescribe
 
Wendy's 3-23 reply to Tommie's 3-22     loved your post - thank you
 
Barbara's 3-23 reply to Herbert L's 3-22     nice post
 
Mike's 3-23 reply to Herbert L's 3-22     thank you for the reminder
 
Janet 3-23     are these PVCs? should I worry?
 
Julie 3-23     too tired to exercise & more
 
Ruthie A's 3-23 reply to Herbert L's 3-22     listen to the lady!
 
Dave K's 3-23 reply to Wendy's 3-18     pharmacist really blew that one
 
Joe S 3-23     pills with side effects & the medical profession
 
Jon's 3-23 reply to Joe S' 3-23     pills with side effects
 
Shelby H's 3-25 reply to Joe S' 3-23     Tylenol PM's main ingredient & more
 
Norma 3-25     suffering from flu & more
 
Jon 3-25     starting the move
 
Jim D 3-25     ACE cough questions
 
Nancy S 3-25     can diet drugs cause CHF?
 
Craig's 3-25 reply to Tommi's 3-22     miserable & would welcome correspondence
 
Charles S' 3-25 reply to Herbert L's 3-22     loved ones have it hard
 
Susan B's 3-25 reply to Derald's 3-16     Disability issues & more
 
Jon 3-27     forms will be back soon
 
Jim M's 3-27     was hoping for more improvement
 
Jon's 3-27 reply to Jim M's 3-27     EF as a measure of improvement
 
LeeAnn D 3-27     disability review
 
Wanda F's 3-27 reply to Norma's 3-13     the over 70 crowd and more
 
Jeffrey 3-27     feeling like a burden to family & more
 
Jon's 3-27 reply to Jeffrey's 3-27     families are made to weather trials
 
Jon 3-27     hey
 
Jon 3-28     hey again
 
Jon 3-29     still delayed but suggest this reading
 
Ralph H 3-29     drug taking, doctors, pets & more
 
Derald's 3-19 reply to Jeffrey's 3-27     feeling useful, coping
 
Scott B's 3-29 reply to Craig B's 3-25     coping
 
Jon 3-30     it seems like we're back
 
Joe S 3-30     seeking advice
 
Rob C 3-30     seek ACE inhibitor/angioedema experiences, advice
 


Derald, March 16, 2002 - Hi, I am very confused about my cardiomyopathy and my future. I'm a programmer. My EF is about 35 to 40% and I'm 44 years old. I can work but I tire out by about 2:00 or 3:00 in the afternoon. I have short-term and long-term disability insurance at work but also my company has had financial problems. If I have to get a new job I'm concerned about passing an employment physical. Also, will I be able to get a short-term and long-term disability policy since now it will be a pre-existing condition?
     I'm scared that if I don't try to make a disability claim now that I won't have anything to claim in the future if and when I get worse. Maybe I'm not sick enough to claim it at this time. Does anyone know what the rules are and how I can protect my family and myself? deraldg@earthlink.net


Henry T, March 16, 2002 - Hi, It must be the season for ICDs! After 3 1/2 years my ICD zapped me earlier this week. It seems I had been in a-fib for the better part of 2 months without knowing it and while out walking with two friends on Monday, the combination of exercise and the arrhythmia was too much and presto, I was cardioverted on the spot! We did finish our walk. I have now been put on Coumadin "for a few months," says my doc; and amiodarone (Cordarone). I'd be interested in hearing from folks who are on these meds about any special precautions, if any, you take before engaging in such outdoor activities as golf, boating, hiking, etc. I'm 55 with an original diagnosis of DCM and CHF. My EF has improved from 12% to 40%. I'm taking all the regular CHF meds. hrtick@aol.com


Brandy, March 16, 2002 - Hi guys, I am Brandy, age 22, and have PPCM with an EF of 50%. I am on Toprol-XL and Zestril. Lately, quite a bit I have had a "disconnected" feeling. I feel like I am walking on air and my head is just kind of floating above my body. I know some would describe this as lightheaded, but it feels so different. It sort of feels like I am just not all there, ya know? I was wondering if anyone else has had similar experiences. Thanks so much, Brandy. brandy@coupongals.com


Jim T's March 16 reply to Norma's March 13, 2002 - Hi Norma, Oh yes, there are a few of us "old" timers left. I am 72 and still doing pretty good. They say I am class four CHF and have an EF of 20 but I do not feel too bad! I don't do too much and cannot travel almost at all. I am on my 10th pacemaker with two leads and that seems to help.
     My family understands my not being able to travel and comes home to see dad a lot, so I am still able to see grandkids and great-grandkids. My wife and I had our 50th wedding party this year. That was really nice since I was not supposed to last this long! As you can see, the Lord had other plans and He is a personal friend of mine! We talk about it every day, Jim T. jcrichtontaylor@voyager.net


Joy R, March 16, 2002 - Hi, I have a Coreg question. I have been on 12.5mg Coreg twice a day since 1997. It was very hard to even adjust to that dose. I read a printout form the drug company that makes Coreg and they listed body aches as a side effect. I have had no problems until lately I have the most horrible body aches, bad enough that I have trouble walking. I am taking motin and darvocet with some relief but when the med wears off I'm back to hurting again. Has anyone else had problems with Coreg causing this? I had thought I'd ask since I go to the cardio doc in April and will ask to change meds if the drug is causing this. Any input will be appreciated. I sure hope I'm not getting fibramyalgia, Joy. pjrector@comcast.net


Jon's March 16 reply to Joy R's March 16, 2002 - Hi Joy, I have always suspected that Coreg is behind my foot and lower leg pain but have never been sure. Since stopping beta-blockers can be dangerous for people with heart failure, I am not taking the chance to find out although I have reduced my dose to 12.5mg BID from 50mg BID - with my CHF doc's cooperation. I do know that back aches are particularly identified as a Coreg side effect. Jon.


Joe S, March 16, 2002 - Hi, I just had my aortic valve and an artery replaced last Wednesday. Because of problems at the hospital I was discharged last Sunday with very little instructions or help. Everything seems okay except extreme discomfort in my chest. I have tried everything from sleeping sitting up, a recliner, bed, etc,..., to no avail. I still wake up in a ton of pain. Does anyone have any ideas what to do or take to alleviate this? I found a web site devoted strictly to this type of surgery which discusses exercises no one told me about before. Help? Joe S. jes@gbis.com


Diane P, March 16, 2002 - Hi, I am confused as to what my dropping pulse means. I was on 50mg Lopressor BID but my pressure got to under 80/50 so the Lopressor was changed to 25mg BID. My blood pressure came up to 117/71. My pulse dropped from 80 to 55 to 60 bpm. I was dizzy, which is one of the ways I discovered the blood pressure problem. I am a newy diagnosed diabetic to ice the cake. I feel like a melting ice scupture. I have had CHF after 3 MIs and a quadruple bypass in 1999. I am monitored by Shands at the University of Florida and have been in twice for special IV therapy. The last time was this past fall and I really felt great; well, everything is relative. I now can't follow the plot in a book. I wear support hose but the blood still has trouble on the way back up, Diane Page. fjpage@n-jcenter.com


Tom S' March 16 reply to Henry T's March 16, 2002 - Hi, My experience with both Coreg and Coumadin has been extensive, and pretty much a breeze with one and a pretty tough time with the other. I was on Coumadin for 4 years when my cardiologist thought that perhaps I could do okay off it and put me on 325mg enteric aspirin daily. That lasted for about a year until I had an echocardiagram in which the same cardiologist discovered my heart had prolapsed and a clot had formed in the prolapsed section. Sooo I went back on 10mg Coumadin per day. That was cut back pretty fast to 5mg a day, then upped to 7.5mg, then back to 5mg every other day and none on Sundays, then a mix of 5mg and 7.5mg. This is all based on blood tests, which for awhile I was getting once a week.
     Recently (within the past 3 days) I started feeling dizzy and there was a rather large blob of pooled blood in my bed from a back lesion that had popped.That was a pretty good sign that my Coumadin levels were too high so I went to the hospital lab and got my blood drawn. The results of the pro-time test confirmed it. So now I'm back to 5mg a day.
     As you can see, I have had a great deal of difficulty regulating my Coumadin. Actually, it has to do more with blood clotting levels. That is why I was taken off it to begin with. I am getting to the point where I would rather go without the Coumadin and go with aspirin alone again.
     As far as Coreg goes, I have been on 25mg twice a day and have noticed lower back pains around the right kidney and some leg pains, but nothing I can't tolerate. I have been on Coreg at that dose for over 5 years now. Good luck. bhigheart@hotmail.com


Jack D's March 16 reply to Brandy's March 16, 2002 - Hello Brandy, What you are feeling is commonly known as "being stoned." Whether it is from one of your drugs or from your condition is what you need to find out. I've just gone on neurontin and I have been stoned for over a week. The doc says it will go away but I think that people on it simply start to believe that this is the way they have always felt. maddjak@hotmail.com
 
Jon's note: Good luck, Jack. Neurontin's body stone almost killed me. <g>


Ruthie A's March 18 reply to Jack D's March 16, 2002 - Hi Jack, I have been taking Neurontin for over 2 years at almost the max dose. One of the primary side effects is sleepiness, which some can interpret as a stoned feeling. That's how I felt at first, too but now only rarely do I suffer from feeling sleepy or stoned. Rest assured it will go away. If it doesn't in a couple of weeks, check with your doc. Happy meds! Ruthie A. rlaba51@yahoo.com


Rob P, March 18, 2002 - Hi all, I am a 41 year old male and have been diagnosed with CHF and dilated cardiomyopathy for about a year. I have responded well to meds and have almost no symptoms. I am however, having one problem that no one can explain. I get chest wall spasms. I went to the emergency room the first few times because they felt like a heart attack. They took my blood gases and a cardiogram and told me that I was just having chest wall spasms.
     I have had episodes that have lasted up to 12 hours. They gave me Tylenol number 3 and said there was nothing they could do. Another doctor gave me an anti-anxiety pill which doesn't lessen the pain, but it does put me to sleep. Has anyone else had this problem? None of my doctors seems too concerned about it although when it hits I am in a lot of pain. emuseum@sympatico.ca


Tom S, March 18, 2002 - Hi, The ProTime Microcoagulation System is a device used to monitor protime or coagulation levels for those persons who are on continuing anticoagulation medications such as Coumadin. It is very much like the glucose monitors because it only requires a finger prick to draw a sufficient blood sample for testing in a "cuvette" device. I saw this device on a web site www.hometestmed.com/ while on a search for home protime testing devices. This company was very responsive and sent me a full package, including medical release forms for insurance purposes. At this point I am going to turn over the entire package to my cardiologist and see if I qualify for home testing. I for one would prefer it over the monthly and sometimes more frequent blood withdrawal techniques usually associated with lab blood tests. I just thought I would pass this info along to fell Coumadin "sufferers." bhigheart@hotmail.com


Karen F's March 18 reply to Joe S' March 16, 2002 - Hi Joe, Welcome to the Zipper Club! I've had my aortic valve replaced twice, once in 1986 with a pig tissue valve and again in 1990 when my body started rejecting the pig valve for some reason that was never ascertained. After the first surgery, I felt periodic pain running through my chest like someone jabbed me with an electric cattle prod. Is this the pain that you are talking about?
     When I reported it to my doc, he told me that to replace a valve surgeons have to actually slice into the heart muscle itself, not just operate on the outside of the heart like in bypass surgery. Doing so, they have to cut through a lot of nerve endings in your chest. Nerve endings don't regenerate, but sometimes it takes a while for the raw edges to lose their sensation. When I was feeling those jolts, what caused it was two raw nerve endings making contact. Eventually the sensations lessened and after about a year, they were gone completely.
     By the way, the fact that the surgeons have to actually cut into your heart to replace a valve also explains why the general recovery time for valve surgery is longer than what is needed for bypass surgery. Take care of yourself. Things will get better! ferhoodled@yahoo.com


Vee's March 18 reply to Brandy's March 16, 2002 - Hi Brandy, My guess is that it's the Toprol-XL that's putting you in the ozone layer. I felt drugged and like my mind was in a fog bank when I was taking metoprolol, which is the non-extended-release version of the same stuff. When I started complaining, they switched me to Coreg and my disconnected feeling got a lot better. However, it's kind of misleading. It just took me longer to realize that I'm still having a similar problem with paying attention, being alert,and remembering things. In other words, maybe I'm not feeling as spacy but I'm still acting that way. Unfortunately, I think that's just the nature of beta-blockers and affects some people more than others. maize2001@hotmail.com


Wendy, March 18, 2002 - Hi, I've had both CHF and anemia for at least 5 years now. In October, the pharmacy put zyprexa in my zyrtec bottle. I got very ill. Soon after that I started needing blood transfusions and am now on oxygen. I've been on CPAP for 3 years. Has anyone ever heard of a drug mistake exacerbating CHF? My health has gone totally downhill since the mix-up. I am class 4 and have awful SOB. wsm311@aol.com


Gayle's March 18 reply to Joy R's March 16, 2002 - Hi Joy, If you are taking a cholesterol lowering drug (statin), there is a good chance it is causing your body aches. It would be wise to call your doctor if you are taking a statin drug. gmholmes@cris.com


Karen K's March 18 reply to Wendy's March 18, 2002 - Hello Wendy, I hope that you notified the state board of pharmacy review of the error made in your prescription. I've been given the wrong refills twice by the same pharmacist. I reported him and found that they weren't the first mistakes he had made.
     This has shown me how very important it is that one checks their medication to determine if the correct prescription was received. I've had several meds that have come out in a generic and received the substitution once the generic was approved. One still must be very alert when taking medications, Karen. karenk@machlink.com


Linda Oline, March 18, 2002 - Hi, I have CHF and a leaky mitral valve that my study group wants to fix. The catch is a 50/50 chance of me being in the control group. The treatment group would get the Acorn net sock sutured around the enlarged heart. I read that in the next year or two they expect to do the valve surgery (the ring around it) without having to do the invasive open-heart, heart-lung machine surgery.
     Is anyone familiar with this procedure? I want to do what is best but the risks are much lower the new way. If this sock works well in trials then in general surgery everyone would get it if they need it and then not have to go back in for major surgery again if they didn't win the flip of the coin in the trial. I am trying really hard to put this off for now. My husband is not strong and I need to help him now. Linda, age 62, EF 24. norvalo@clarinda.heartland.net


Derald's March 18 reply to Jon's March 16, 2002 - Hi Jon, When I went to see my internist last December, one of my complaints was that my feet hurt. That's the day I found out I had cardiomyopathy. I put inserts in my shoes and started on enalapril (Vasotec), but no Coreg. Now I have no foot pain but I bet it was circulatory related. deraldg@earthlink.net


Jon's March 18 reply to Derald's March 18, 2002 - Hiya Derald, Those are both good points. I was sort of hoping my foot pain was structural, thinking it could be fixed. Unfortunately, all the usual causes have been ruled out for years. The pain travels almost up to my knees. Bummer. But hey, I am glad you got yours figured out. Signed, an envious Jon! Jon.


Shelby's March 18 reply to Wendy's March 18, 2002 - Hi, I strongly think Zyprexa can cause or worsen an episode of CHF, but none of the doctors agree with me. I only have my own anecdotal evidence. I had undiagnosed DCM probably for years, but I never had any CHF symptoms until 4 weeks ago, which was the exact time my doctor prescribed Zyprexa.
     I went on the Zyprexa (a new drug for me) and within days started feeling my first symptoms of CHF: fatigue, SOB, and chest pain. A week later I was switched to Seroquel, a similar medication to Zyprexa, and continued to deteriorate very rapidly in the heart department. Finally I got to the hospital and was diagnosed with CHF. The doctors insisted that the Zyprexa and Seroquel had nothing to do with the rapid, sudden onset of CHF but the timing is exact.
     Now that I read Wendy's note and it's one more person who went downhill after taking Zyprexa. It may be a really rare reaction but I would advise all heart patients to be careful of Zyprexa and Seroquel.
     Jon's Note: This came later in a separate post also from Shelby to Wendy - I've done some more research into Zyprexa and one of the rare side effects listed is CHF, so it seems probable that your CHF was worsened by Zyprexa. Good luck in your recovery. shelbyscout@hotmail.com


Janet T B's March 18 reply to Shelby H's March 13, 2002 - Hi Shelby, I too am a newly-diagnosed younger patient (age 39) and have had to deal with the roller coaster of feelings you described. I will tell you that you have come to the right place. There are many loving and knowledgable people on Jon's site who have been where you are now. I imagine you have heard from some of them privately by now.
     As far as how to deal with it, I think that each person copes with the plethora of feelings in their own way. I can only share with you what I have experienced. First, I would encourage you to not be afraid of those feelings - they are very normal for someone in your situation. However, I would also encourage you to try not to dwell too long in the dark valley because it can affect your condition. Seek support from those you love and who love you, and talk with them about how you feel. Learn all you can about your condition. That will give you a sense of control in an otherwise chaotic situation; and try to keep the "long view". Don't sell your future, but plan for it. If prayer is something you find comforting and sustaining, pray.
     Although there are no guarantees in this unfortunate game, if you take your meds, stick to your diet, exercise at an appropriate level (ask your doc), and follow the rest of your doc's advice, your condition may very well improve. If I set aside all the negative aspects of DCM and CHF, one of the positives is that I more readily recognize the many blessings in my life. Cherish those blessings. Know that there are many people out here rooting for you, including me! Many hugs to you, Janet T. B. jtitus@chestnut.org


Peggy's March 18 reply to Henry T's March 16, 2002 - Hi Henry, My husband is on Coumadin and was on amiodarone until last week. They took him off the amiodarone because his blood platelets went way too low. He's still on the Coumadin (warfarin) though. When he was on both he took no precautions nor was he told that he had any limitations. He was dizzy a lot and lightheaded. He also tired easily. We are hoping now he stays out of a-fib! Good luck to you, Peggy. RyoungAngora4683@aol.com


Raya, March 19, 2002 - Hi everybody, I am one of the oldies. I was diagnosed with idiopathic dilated cardiomyopathy in May, 1997. I have been on Coreg since July of 1997, first on 25mg BID and a few years ago decreased to 12.5mg BID. I've had no problems starting Coreg, and actually I felt much better for a long time. I also take 50mg Cozaar once a day, 0.125mg Lanoxin per day, and 80mg Lasix BID. I have not written for a long time, but have been lurking all these years.
     For about the last 3 days, I have developed pain on my lower left back and left upper thigh. I now take 600mg ibuprofen twice day for it and it seems to help. When the pain is there I have difficulty walking, it hurts so much. I am wondering if it could be side effects from Lopid (Gemfibrozil 600mg BID) or Coreg? I have taken both of them since 1997. I have my cardiologist's appointment on April 15th, but would love to have some input from you all. raija@juno.com


David A, March 20, 2002 - Hello to everyone here, This past weekend in our local Sunday paper I read some travel information, how it relates to COPD and use of oxygen. There are two web sites that deal with this subject and may be of assistance for people who use oxygen and for those that don't, but still hesitate to travel. I'd like to pass this information along to everyone here. The sites are: www.breathineasy.com and www.lungsandiego.org (click on the pop up scrolling link "How to Travel with Lung Disease"). Take care, everyone. DEZEN@worldnet.att.net


Jon, March 20, 2002 - Hi, Awhile back Tracey C had BNP test results reported in an unusual unit of measurement called femtomoles (a metric measure but unusual for this test). The manufacturer of the test kit - Biosite Diagnostics - did the unit conversion for us and reports that the conversion factor is 3.45098. So if your report is in fmol/mL, you can compare your results to the standard (shown in the tables here) by dividing your result by 3.45098. Jon.


Bob, March 20, 2002 - Hi, I was diagnosed with cardiomyopathy with a severely enlarged heart in March of 2001 and had an EF of 10%. Since then my EF has risen to about 40% and my cardiologist has more or less said I was better and the chest pains I am having are indigestion. They feel like a band or constriction across my chest and are now happening many times a day but only last a very short while.
     However, twice in the last week I felt like I was suddenly punched in the chest and the pain was much sharper. This lasted for a few minutes and was gone. I recently found out that the cardiologist thought I may have had a heart attack in the past, but I am not aware of that. When I was first diagnosed I did have a heart attack while I was hospitalized. I was not aware it was happening until the nurses rushed in and woke me up. I had no pain.
     My question is, if I seem to have heart attacks without having any pain or overt symptoms, should my cardiologist be paying more attention to the chest pains I am having? I am thinking about getting a second opinion but the closest CHF specialist is about 300 miles away. I would appreciate any input. Thanks, Bob. BobACP@tri-lakes.net


Jon's March 20 reply to Bob's March 20, 2002 - Hi Bob, Yes. Get the second opinion. Jon.


Pat L's March 20 reply to Rob P's March 18, 2002 - Hi Rob, A month after I was diagnosed with CHF, I experienced very bad chest pain while driving on an interstate and pulled off into the nearest Emergency Room. When you say chest pain, they do move fast. They did an EKG and said it was not a heart problem. Later I learned it was probably costochronditis, a muscular-skeletal problem which causes chest pain. You can learn all you want to know about it by going to a search engine and entering costochronditis as the search word, Pat. Patlat@yahoo.com


Joan, March 20, 2002 - Hi all, I must be the only CHFer with this problem since I never see it in the posts. I need advice from anyone who may help. I had quadruple bypass 2 years ago and had an arrhythmia as a result. My EF was 45% and I feel well enough but I can't find a doctor who will get my blood pressure down. I have a heart murmur and a slight mitral valve leak but I feel good. My pressure is in the high 180s in the AM, but drops to the 170s and 160s after meds, which are a calcium channel blocker (300mg Tiazac), 0.25mg Lanoxin, 50mg Captopril, 50mg Atenolol, and 40mg Lasix. Ideas, anyone? Thanks. MMeeks5821@aol.com


Dudley, March 21, 2002 - Hi, I am looking for a CHF specialist near or in Thousand Oaks, California. Thanks, Andy. dudley898@adelphia.net


Charles' March 21 reply to Norma's March 13, 2002 - Hi, I'm not quite 70 but I'm getting close at 65. My heart failure, diagnosed at age 62, just sneaked up on me. I was making plans for a one month trek in Nepal when my wife reasonably insisted that I get a general checkup. My EKG was abnormal. Thus I was sent to a cardiologist who discovered that my EF was about 21% and my cholesterol about 300. Since my main hobby for more than 40 years was hiking in the mountains I never worried about the condition of my heart - which was a serious mistake.
     Among the many tests I've taken over the last 3 years are included (about every 6 months or so) Vo2 tests for which my scores have been 22, then 18, then 16, then (gulp) 19.5. I have another such test scheduled for next Tuesday. I'm a little nervous, which helps explain why I'm back at Jon's site again. carvcove@aol.com


Joseph P's March 21 reply to Raya's March 19, 2002 - Hi Raya, I have a lot of heart problems too. I also take a lot of the same meds you take and more. When I had aches and pains I was told by my cardiologist not to take ibupropen because it could conflict with the meds I was currently taking. Has anyone else heard of this? Joseph P. joeandol@shawneelink.net


Jon's March 21 reply to Joseph P's March 21, 2002 - Hi Joe, NSAIDs - which ibuprofin is - are definitely bad for CHFers. See the following articles for more (let them load):

Jon.


Joanne Kaysar, March 22, 2002 - Hi, I just got notification on Friday that my Social Security disability benefits have been approved. It took exactly one year. I thought I might give hope to others who are still awaiting a response! JoKayser@adelphia.net


Tommie, March 22, 2002 - Hi, I'm a 45 year old female and have had CHF for 11 years. I'm really just tired, physically tired, but mostly tired of messing with this. I know I'm not the only one. Does anybody else feel that way? I have never actually met or even spoken to anyone around my age who is in my situation. It gets kind of lonely. I don't even know anyone who knows anyone like me! I think I just could use a little help here. Thank you. tommie@clearnet.net


Jon's March 22 reply to Tommie's March 22, 2002 - Howdy-doo Tommie, Welcome to Jon's Place. I am about to hit age 44 and was diagnosed with severe heart failure in 1994, so I am pretty close to you in all respects except that gender thing. <g> There are a lot of people in the same boat around here, so make yourself to home. ;-) Jon.


Joy's March 22 reply to Raya's March 19, 2002 - Hi Raya, It was a surprise to me that you had been on Coreg since 1977. I thought it was a rather new drug. Since being on it, I now have restless leg syndrome and pains in my legs at times almost unbearable, almost always while at rest. The rest of me just kind of aches, which I have been using NSAIDS for but after reading Jon's earlier post, I will change to Tylenol. It's amazing what we don't know that can hurt us. When I go to the cardio doc this coming month I am going to ask to decrease the Coreg dose down a little to see if it helps. Of course between heart failure and aches, twitches, and pain, I guess I'd take the aches and pain. I sure don't want to get in failure again - nofun there! Joy. pjrector@comcast.net


Jon's March 22 reply to Joy's March 22, 2002 - Hi Joy, I am assuming there was some confusion in Raya's post about her meds. I wrote the FDA and they tell me that carvedilol (Coreg) was approved in the USA by the FDA in 1995 for the first time for any illness. I left the 1997 date in her post because it was repeated 3 times so I assumed she meant it. Jon.


Raya, March 22, 2002 - Hi Jon, I'm sorry I must have made a mistake in my post. Bill D thankfully notified me per e-mail. The year, of course, should be 1997 and not 1977. A senior moment? Typo? Or medication side effect? Sorry about that. By the way, the pain is still there, and it isn't a disc problem. I have had that and it is completely different, Raya. raija@juno.com
 
Jon's note: I'll change it


Liz, March 22, 2002 - Hi all, I've been recently diagnosed with genetic emphysema, very mild right now, but am bothered by persistent chest heaviness as if someone is sitting on my chest. This causes SOB that doesn't go away with lung meds. I've had these symptoms for a few months. My family doctor just prescribed Zyprexa that he hopes will alleviate the heaviness. I did have a stress echo recently which was normal except for LV enlargement. My pulmonary doc thinks that I may have an underlying heart problem in addition to the COPD, despite the echo. My question is, aren't echos pretty solid evidence of no heart problem and should I take the Zyprexa, given what I'm reading on this forum lately? MaryAstor@aol.com


Jon's March 22 reply to Liz' March 22, 2002 - Hi Liz, I am not a doctor and can't give you a definite answer on what meds to avoid or take. However, readers have reported some real nasty problems with Zyprexa, Seroquel, Sporanox, and NSAIDs. Search The Archives for more on that. I would suggest seeing a CHF doc for a full workup before continuing on a bunch of lung meds. That's just my opinion. No single test is absolute, as so many of us here can attest. ;-) Jon.


Liz, March 22, 2002 - Hi all, It's me again and I'm in shock. Did any of you know that Zyprexa is an antipsychotic drug? Well, I just found that out and would've taken it without thinking if I hadn't stumbled on those previous posts. What does that have to do with my chest heaviness? What was my family doc thinking? I took the news of my emphysema really well, I thought! I am dumbfounded and clueless in Pennsylvania. MaryAstor@aol.com


Herbert L, March 22, 2002 - Hi, You know that little man at the bottom of the posts here? Well, I clicked on it for the first time and went to the other side (the family side) for the first time. All I can say is that I'm sure glad it's me with the CHF. At least I can feel what I'm feeling. Those poor good souls are the real victims of our illness. They think so much, while we don't have enough oxygen going to our brain to think like we used to. They worry about everything more than they used to because we are not there mentally to pull our share because we now refuse to stress or our antidepressant is working so well we are in la-la land.
     They want to help us and we don't know what we want. They watch us and when we are feeling the unusual stuff that's going on with us, they can only silently watch and worry because if they say too much it will make us feel bad or mad. Your lack of being able to do what you used to really makes you mad until you get used to it. Ah, I don't think you really get completely used to it! Imagine how they feel, not only watching you go through this, but having to do it for you, and the concern they have because they don't want to offend you because they did.
     But do you know what? They are most willing to be as much of your life as they can. After all is said and done, you're what they live for, just like you. I went to a yard sale last year and they had some really good stuff. Talking with the lady selling the stuff, she said her husband had died the year before from CHF. I told her I had the same thing. She then got right in my face and told me that I better take good care of myself - for my wife! It seems that her husband smoked to the last day, didn't exercise, and just gave up. She said that as much as she tried, she could not get him to stick around. She was a very lonely widow and said that I had a very nice wife and should take care of myself for her.
     You guys watch out for that little man button, you'll get a look at the real world you live in. God bless them. I do. the-honey-do@charter.net


Fred D, March 23, 2002 - Hi, I was diagnosed with CHF in 2000, and have been doing fairly well. SOB is my biggest problem but I can work around that. My question is, why are our immune systems not up to par since we take so many meds? If I get a cold that most people would shake in a week, I have it for 2 or 3 weeks. I am now battling an intestinal problem that most people shake in a couple of days. I'm not complaining, I am glad to be alive, but this ongoing sickness is starting to bother me. I did get my flu shot so I have avoided that. jdeal@alltel.net


Jon's March 23 reply to Fred D's March 23, 2002 - Hi Fred, Our meds don't make us well. They reduce the heart's workload by screwing around with the body's internal regulatory systems, artificially reducing the action of those bodily systems. Throw in a weakened heart moving less blood and thus less oxygen and fewer nutrients to our other organs. Toss into the mix some serious dysfunction in the lining of our blood vessels (endothelium) due to heart failure and it's no big surprise that we get sicker and stay that way longer. ;-) Jon.


Ralph H's March 23 reply to Nancy B's March 14, 2002 - Hi, Coreg is an adrenaline blocker with a dose-dependent effect occurring pretty fast after you take it. It can cause many side effects that I became aware of when I lowered the dose. I injured my hand with a power saw while on high doses. It caused disorientation and short term memory loss in me. I believe PVCs are also a side effect also. I believe taking the minimum dose, not the maximum dose is the key. Blood pressure and heart rate ranges are the key to dose administration. Don't let the rates go below the detailed directions. A blood pressure tester should be prescribed with Coreg but most doctors just push the pills. It appears more and more people are sustaining injuries from loss of balance.
     A book that was lent to me by a fellow heart patient is "Is it worth dying for?" by Dr. Robert S. Eliot (cardiologist) and Dennis L. Breo. It is about stress management and effects on heart. It is a alternative to the high drug doses. I am now on 3.125mg BID Coreg and soon will get my next echo test. My biggest improvement is getting a good night's sleep. I went from 25% EF to 55% EF on 1/6 the drugs I now take. Let me tell you if you are under 50 with idiopathic DCM, check stress factors because I haven't had a doctor do it yet. Education is the only way to maximize your indidual problem and this web site is the best. Jon, my hat is off to you. ralph_hartzell@hotmail.com


Jon's March 23 reply to Ralph H's March 23, 2002 - Hi Ralph, I'll be playing devil's advocate on this one. I am not trying to be contrary or smart-alecky, really. However, I comment sometimes to be sure that other readers - not the one posting - don't misinterpret what is being said.
     It pays to be careful using electrical machinery when taking a lot of Rx drugs. I'm not blowing smoke here. I am a journeyman cabinetmaker who worked in saw mills and lumber mills for almost 15 years. I was taking drugs - including beta-blockers - for migraines much of that time. Setting up and running machines with cutterheads full of razor-sharp steel whirling at 8,000 RPM taught me my limitations. Your injury may well have been partly the drug's "fault" and I understand that. However, it is mainly the fault of the person taking drugs but going ahead and handling the tools. I am very well trained (4 years of night school plus 8,000 on the job hours before becoming a journeyman) but am very cautious in my own wood shop for this very reason. I have stopped many a project partway through because I wasn't sure I was mentally up to doing tricky machining due to my meds. It's a real drag but I've seen what can happen to the unwary.
     Coreg is well known to reduce PVCs, so I am having a hard time with your comments on that one. My own CHF doc reduced my PVCs by raising my Coreg dose - for that very reason. Coreg is, after all, a class 2 anti-arrhythmic drug.
     Loss of balance is often from low blood pressure. Coreg certainly lowers blood pressure but so do ACE inhibitors, ARBs, calcium channel blockers and often diuretics as well. Dehydration also causes lightheadedness. Many CHFers are kept too "dry" by their non-CHF-specialists, resulting in dehydration to some degree. So while Coreg may be one culprit, it is not accurate to say that it is the culprit behind "loss of balance" injuries.
     A published CHF doctor that I personally know told me quite bluntly that there's "more proven survival benefit with Coreg at 25mg twice a day than at 12.5mg twice a day." It's a matter of what is proven. A lower Coreg dose might be of great benefit without so many side effects. However, we just don't know that.
     It is tremendously important for people like you to give their opinions so that we can get a "feel" for what is working for patients in real life. After all, that's the reason for this message board! I just want to be careful that other readers don't assume everything that is said here is proven fact. Even my ridiculously strong disclaimer at the top of the page goes unnoticed by some, so every once in awhile I reply in a negative way to make points. ;-) I hope you don't take offense - I value your input.


Don C's March 23 reply to Dudley's March 21, 2002 - Hi, Kaiser has a pretty good CHF doc in Woodland Hills. Her name is Joclyn Turnier. She's the only thing that kept me out of a pine box. pine32@pacbell.net


Shelby's March 23 reply to Liz' March 22, 2002 - Hi, I was about to say that Zyprexa is an atypical antipsychotic that has nothing to do with your chest pain, but it looks like you already found that out. I cannot imagine what your doctor was thinking prescribing it. The only thing that I can think of is that he mistook it for Xanax, which is an anti-anxiety medication that can alleviate SOB, chest pain and tightness during anxiety attacks, if you happen to be having anxiety attacks.
     In any case, if your pulmonary doc thinks you have heart trouble, regardless of what the echo says I would be very wary about taking any kind of new medication, including over the counter cold and allergy medications that raise your blood pressure. For each new medication you get, make sure you ask the doctor what it's for, what it's supposed to do for you, and what side effects to look out for. At the very least, make sure you read the printouts that you get from the pharmacy about each medication and look them up on the Internet. shelbyscout@hotmail.com


Wendy's March 23 reply to Tommie's March 22, 2002 - Hi, Having just been diagnosed with CHF this month, I can only imagine your frustration of dealing with CHF for 11 years. However, I've been living with MS for the last 17 years so I do understand the weight of dealing with a chronic illness. I just wanted to tell you that your post made my day. Eleven years? That's wonderful! These doctors make me feel like I'm going to fall down dead in the next 5 years! Thank you for giving me hope and making me smile. We'll hang in there together. :-) wendimail@aol.com


Barbara's March 23 reply to Herbert L's March 22, 2002 - Hi, That was very well spoken. Thank you. Scooty59@hotmail.com


Mike's March 23 reply to Herbert L's March 22, 2002 - Hi, I just learned yesterday that I have diastolic dysfunction and will begin meds on Monday. I was really depressed last night and was really feeling sorry for myself since I was 62 last May and retired on July 1, 2001, and was looking forward to very productive remaining years. After reading Herbert's post I guess I'll beat this thing for my wife and family, God willing. Thanks Herbert. mikejdad@westco.net


Janet, March 23, 2002 - Hi, PVCs? I had 2 incidents today about 5 minutes apart that felt like my heart stopped, then about 2 seconds later felt a hard thump and an increase in pace. Immediately after, I felt flushed and nauseous. It really scared me. I haven't felt any PVCs in more than a year since taking Coreg daily. The ones I had back then were pretty mild too. Does this sound like a typical PVC that others have experienced or should I be concerned? My EF is 49%, in recovery from PPCM. janetca1@email.msn.com


Julie, March 23, 2002 - Hi, I am 31, a single mom and have just been diagnosed with IDCM. I work 12 hour shifts at work and get really tired. When anyone asks how I am, the answer is always - tired! My EF is 30% and the doctor told me to exercise every day for 45 minutes. I am too tired. I do like to walk but the weather now is really snowy. I am on Zestril and HCTZ. Does anyone have any suggestions? If anyone wants to chat, I am always open to meeting new friends. :-) wrinklybuttwiper@aol.com


Ruthie A's March 23 reply to Herbert L's March 22, 2002 - Hi Herbert, I am so glad you put into words what I have been thinking about lately. I have many other illnesses and conditions besides CHF, so my life is pretty complicated. I have made it a point to thank my hubby periodically for all he does for me. I am completely disabled and hubby does all the work around the house in addition to working 55 to 60 hours a week at his job. What a guy!
     Just this evening, he told me I couldn't die before he did. He didn't want to be single again! He is afraid of having to go through the dating scene after over 25 years of being off the market. He is afraid of being left alone and lonely. So listen to that lady. She knows whereof she speaks! Ruthie A. rlaba51@yahoo.com


Dave K's March 23 reply to Wendy's March 18, 2002 - Hi Wendy, Not that it may be a big help and I am not an attorney but there may be a word for that pharmacist's error. It is malpractice, Dave. dkreifeldt@yahoo.com


Joe S, March 23, 2002 - Hi, Two weeks ago I had my aortic valve and an artery replaced. Other than being very spacy for 2 weeks everything seemed to be going all right until last night. They prescribed hydrocodone/APAP 5/500 (generic Vicodin) for pain. I took 2 and got so spacy I didn't know where I was so I switched to extra-strength Tylenol. Stupid me, yesterday I ran out and took Aleve. I had no problems with it until last night when I couldn't sleep so then I took a Tylenol PM. I became so spacy I couldn't get up. To top it all off, I couldn't breathe lying down. It is now 10 hours after taking the Aleve and I am feeling a little better. I hate feeling out of it so much.
     One more thing I have to get off my chest is the doctors call this major surgery, yet no one from either the hospital or doctor's office has bothered to contact me. I had to call and make an appointment to remove my staples. I don't think they care. What is wrong with the medical profession? All they seem to want is money : $45,000. I am convinced they would have let me die if I didn't have Medicare. Thanks for listening, Joe Stevenson. jes@gbis.com


Jon's March 23 reply to Joe S' March 23, 2002 - Hi Joe, About the pain killers, this is a common reaction to the first dose. If you keep taking it, this effect should go away and not recur. Jon.


Herbert L's March 21 reply to Bob's March 20, 2002 - Hey Bob, Think of it, 300 miles in one direction, 6 feet in another. It's nice to have a choice. the-honey-do@charter.net


Shelby H's March 25 reply to Joe S' March 23, 2002 - Hi Joe, Plese do not take Tylenol PM without asking your doctor. It contains benadryl, which can lower blood pressure. The Benadryl package advises caution if you have heart disease or high blood pressure, but I don't think the Tylenol PM package has that warning. Aleve is an NSAID, which we should also avoid. Tylenol PM contributed to my grandfather's hospitalization. He took it without his doctor's knowledge. shelbyscout@hotmail.com


Norma's March 25 reply to Fred's March 23, 2002 - Hi Fred, Misery loves company I guess, because I was very comforted when I read that you are experiencing the same drawn out illnesses that I do. Even though I have had a flu shot I still got flu this year, which in other people lasts 24 hours. I had it for over 3 weeks and was beginning to think my heart was at last giving out.
     After I recovered, I swore to myself I wouldn't get so depressed if it happened or should I say, when it happens again, because worrying that one's health is going backward is so negative and with this particular illness we have, a positive attitude is a must. I don't know if others get ill about 3 days after being in the sun but the sun does drain your immune system, so even though the pool and the beach beckon, I ignore their siren call. Still, I'm lucky to be in the Sunshine State and not having to face the cold up North. Lots of blessings to count. Norgreenbriar@aol.com


Jon, March 25, 2002 - Hi everyone, I begin the move to a new domain today, starting with The Archives and The Beat Goes On. Because I am not shutting down the message boards to make the move (it would mean a 2-week shutdown), this will create lots of broken links for a month or two. I apologize but have decided to completely rewrite the site without turning off The Beat Goes On, so it will be a messy process. Still, I get as much from these posts as you do - maybe more - so I want to keep them going. Thanks for your patience, Jon.


Jim D, March 25, 2002 - Hi, I am newly diagnosed with DCM and CHF. I also have a LBBB. I found out on 1/15/02 and was blown away. My meds are ACE inhibitor, Lasix, digoxin and Toprol-XL. I also take Effexor and Flomax. Since starting the ACE inhibitor, I have developed the "feathery itchy cough." I had a cold last week and now it is worse. My cough is no longer dry and unproductive but is now wet with residue from constant post nasal drip. The post nasal drip has been with me a long time. I was swicthed to Cozaar and Coreg for awhile but was taken off both, which did not help with the cough. It drives me nuts and keeps me awake too. Now I am on Altace ( Ramipril). Can anybody identify with this or offer a solution? Thanks, Jim D. sodevine@licadd.org


Nancy S, March 25, 2002 - Hi, I would like to know if anyone here has taken Redux or Phen-fen in the past. Since I don't know what caused my CHF, I am curious if this could be a possibility. Thanks, Nancy. ns1@alltel.net


Craig's March 25 reply to Ozzie's March 22, 2002 - Hi Tommie and Julie, I am 39 and was told I have idiopathic dilated cardiomyopathy after a one week spell in our hospital's CCU ward. I came out after losing 11 kilos (24 pounds) of fluid. They fixed my pneumonia, fixed my lung and chest infections, and started me on meds. Coming out of the hospital, and feeling really grateful to have a wife by my side, I felt lucky.
     Now everything has gone downhill rapidly in the past few weeks. Just as I was starting to get used to my new life and my meds, my wife has now left me and taken my beautiful 3 year old boy with her. Yes, I feel totally miserable, lonely, sad, upset and generally wondering what is the point? We are also right in the middle of a house move, and I have no job and no money. I do get a small amount from what is similar to your SSD but nowhere near enough to cover stuff.
     My wife and her family blame me for her worsening condition and her general high stress levels at her job, which she went to 3 times per week. She has recently lost a lot of weight and has been generally stressing about our difficult situation. They blame me for everything, as if I don't have enough worries. Believe me, both of you, I completely understand how you feel and I too welcome any and all correspondence. I am sorry to seem so miserable but I am. bayce@joynet.com.au


Charles S' March 25 reply to Herbert L's March 22, 2002 - Hi Herbert, Once when I was sitting on the pity pot, I said to my wife, "If you really hate someone, wish a heart attack on them." She replied without hesitation, "No, if you really hate them, wish it on their spouse." rschurick@seidata.com


Susan B's March 25 reply to Derald's March 16, 2002 - Hi Derald, When my husband first got sick about a year ago, we didn't know what we needed to do. He is a fire fighter and it was clear to me - not to him - that he was not likely to return to fighting fires. So I called some of my friends, attorneys who practice disability law. Get all the information you can get. Not just any attorney will do. You need to get one whose practice is mainly disability (75% or more). I don't practice that type of law and know nothing about it except what I have learned because of my husband's illness, and that information is limited because fire fighters don't pay or collect SSD unless they get it from their second jobs.
     No one can predict how you will do. My husband is doing very well. His EF has doubled in the first 6 months of treatment and he feels fine. He sometimes passes out if he stands up too fast, twice in the last 6 months. He wants to go back to fighting fires. That is the hardest part for him: not being able to fight fires for a living. He is working as a dispatcher but he has not eaten any smoke (at a working fire) for over a year and he misses it. After 25 years on the job, he still loves the work. Good luck, Susan B. gbracher@kc.rr.com


Jon, March 27, 2002 - Hi everyone, Sorry for any confusion. I forgot to have my web host set up my new e-mail addresses when he set up the new domain and I need the addresses for my forms to work. The forms will be back as soon as the address my scripts use is ready. Jon.


Jim M, March 27, 2002 - Hi, I'm 38 years old and was diagnosed with IDCM about 5 months ago. Jon, I've found your site really helpful. Thanks for all the effort you put into it. My question is about "typical" response to treatment. I know as I write this there is no typical response, but I'm looking for feedback anyway.
     My first echo after 5 months of treatment with Coreg, Vasotec, aspirin and exercise showed slight improvement in my EF from 20-25% to 25-30%. I'm glad to have some improvement but was hoping for something more dramatic. I see lots of people reporting dramatic increases in EF in this forum, but I don't know if it usually comes quickly after treatment starts or more slowly.
     My doctor is still increasing my dosages. I'm at 12.5mg Coreg BID and 10mg Vasotec now. That could certainly still have increased effect. As far as gauging my progress by symptoms goes, I had no symptoms to begin with except for mild fatigue and now I have no symptoms except for major fatigue from the meds. jim.murphy@renp.com


Jon's March 27 reply to Jim M's March 27, 2002 - Hi Jim, Some CHFers see EF improvement in the first 6 months. Others - like me - saw no improvement at all for several years, then a steady improvement. My EF went from 13% to 50% but it took 6 years to do so. I would like to point out, however, that EF is not a certain indicator of your prognosis or how you will feel down the road. It is strictly a measure of heart function. In that regard, it is extremely useful, but it's not a catch-all way to define improvement in your overall heart health. This is something non-CHF-specialist doctors (PCPs, internists) rarely understand. CHF docs almost always understand this. I felt much better with an EF of 13% than I do now with an EF of 50%. There are so many factors at play in CHF - many still undefined or not understood - that one measure means little overall. Everything plays a part but no one part overshadows the rest in heart failure to date.
     I strongly recommend that you take your exercise program and low sodium diet very, very seriously at this stage in your illness, and from now on. I believe these two factors play a large role in preventing disease progression. Stick with aggressive ACE inhibitor therapy as well, even if your heart function improves. These things may help you remain feeling well for a long, long time. Jon.


LeeAnn D, March 27, 2002 - Hi everyone, I read all the archives and recommended sites on SSD and although I feel more informed, there isn't much from people who have actually been reviewed and seen by an SSD doctor. I'm nervous about going. My regular (although new) doctor thinks I can work a desk job, so's he's no help at all. My problem is that if I do work I will be too exhausted to take care of - or even have a little fun - with my 3 young children. I'm thinking about going to bed very late and not wearing any make-up. That should scare anyone when they see those dark circles under my eyes and greyish lips! <g> DDavis1057@aol.com


Wanda F's March 27 reply to Norma's March 13, 2002 - Hi, I'm over 70. In fact, I'm 74 today. I was diagnosed with pulmonary embolisms in October of 1997 and with DCM and CHF in December of 1997 so I'll have a 5-year anniversary soon, going for 10! I'm on the usual meds: Cozaar, Lasix, Coreg, Coumadin, potassium and Lipitor. My new cardiologist thinks I am doing great and I am.
     My EF started out in the low 30s and would you believe in January of 2002 it was 63%! I have thought so often of Jon saying, "It's not the numbers, it's how you feel." I guess I really don't know how a 74 year old is suppose to feel, but I really have some spells when I must sit down and regroup since I still have my shortness of breath and periodic weakness. I feel sure there are a few over-70s out there that understand the feeling.
     I'm going to keep a positive attitude and strive for that 10th anniversary! This forum has been a blessing to me. Thank you, Jon. jpffsar@aol.com


Jeffrey, March 27, 2002 - Hello, I'm a 39 year old man with CHF for about 10 years now. I've been on disability for the same time. I feel so hopeless sometimes, I can't work and I'm tired all the time now. I have a wife and 2 kids and I hate being a bother to them. Am I alone on this or are there others out there? I would love to talk with you. Thanks, Jeffrey. jeffwheeler2@hotmail.com


Jon's March 27 reply to Jeffrey's March 27, 2002 - Hi Jeffrey, Hopefully this is a phase for you and you'll find light in your life soon. Light is always there, we just have to open ourselves to it. I answered a very similar e-mail once and here's what I said then. I think it still holds true.
     Families are designed for tough times as well as easy ones. My own family has grown closer since I got sick. Personally, I look at God as the original template for family: Father, Son and Holy Spirit (as teacher and comforter, God's Spirit must be a mother type). Design by God, based on God, is the strongest, most resilient design possible - literally. So try not to look at trials as putting your family through something. Look at the family as a cornerstone of strength for all members within it, both strong and flexible. Share and be comforted. Share and learn. Share and grow stronger. Share and make it through the hard times as a unit. If your wife was sick, would you consider her to be putting you "through" something? Of course not. If your child was sick? Of course not. You are seeing in yourself the instinct of man to be the strong one, the provider. That's how we're made, but Jesus makes us able to reach beyond that.
     Hopefully, others will reply as well. Jon.


Jon, March 27, 2002 - Hi everyone, If you see a serious problem in your browser while looking at any of the "new" pages, please e-mail me at misterbooboo@prodigy.net and tell me which page, what the problem is and what browser you use. I would really appreciate it!
     I am only checking the pages in 2 browsers and then validating the HTML. Although that checks out, there can still be things that really "break" on a page and I would never know it unless someone tells me. Links will be broken for awhile but that will steadily clear up. ;-) Thanks, Jon.


Jon, March 28, 2002 - Hi everyone, The forms are gone from all my pages that usually have forms (I hope). This is due to a delay in that e-mail address I mentioned earlier. Until I get that address up and running from my web host, I can't use my scripts. It's a techie glitch but I just have to wait. Sorry for the delay, and I hope to have all the forms back up within 24 hours. Jon.


Jon, March 29, 2002 - Hi everyone, Still no address to route forms through for posts. I am sorry. I hope to put the forms back up for posting in a day or two but so far my plans haven't panned out so as quickly as I thought they would. <g> Here are the few posts still on hand, though.
     Also, as I rewrite a zillion pages, I finally finished the FAQ and realized that any CHFer with diabetes really should read the FAQ guidelines for diabetic CHFers. There's some interesting beta-blocker info there. The other official guidelines are also very informative in very few words. Jon.


Ralph H, March 29, 2002 - Hi everyone, Coreg's benefits are certainly documented but since it has been approved for only 5 years in CHF patients, I am only trying to caution the people taking any medications that affect blood pressure and heart rate. These drugs are very good if closely monitored and Jon is well informed to the side effects. I am trying to educate others so that injuries can be minimized.
     CHF patients need to make a file of their records and organize it to make sure your doctor is paying attention to your specific problem. I have had to switch many doctors and will inform the medical board as to their improper care. To do this you must have your file. My previous doctor was informing me that my ejection fraction was 28% until I told him he was misreading the fractional shortening result. My EF was 55%. How would you like to have this guy prescribing you drugs with this type of mistake?! Coreg helped me get back on my feet but my hand injury was an adverse event I must contend with.
     I just think patients should be watching their BP and pulse, and tailor their drugs to the measurements. Each person is different and the drugs should not be distributed by the cook book method. Jon, I have such respect for you to allow this forum and play the devil's advocate. I was adhering to the book, "Is it worth dying for?"
     My pet dog, Sugar, died this past weekend and it is very difficult. Those of you who have a pet, take some extra time this week and give 'em a good big hug and tell them you love them. I treated my Sugar well but it still hurts and she died in my arms at 14 years, I think of heart failure. I just didn't get her to the vet in time. Hug your pet while you can; I did but it still hurts. ralph_hartzell@hotmail.com


Derald's March 29 reply to Jeffrey's March 27, 2002 - Hi Jeffrey, Jon is right on the money with his response. Look to God first and answers will begin to fall into place. You're getting close to 40 and that's a hard time for most people even if they don't have CHF. It sounds like you need to feel useful. It depends on how well you feel of course, but if you're well enough, a few hours a week try volunteer work.
     Help out your family with things you can do, study with your children. Help them use the Internet and the computer to do homework. Look up easy recipes for your wife. Clip coupons. Teach your kids some songs. Tell everyone in your family at least once a day that you love them. Kiss your wife every morning and every evening before bed. Say grace with your family before a meal. Make a big deal out of it when your wife comes home and your children come home from school - it makes them feel special. If you're well enough, help out with the housework. Bring your wife coffee in the morning or make her some tea without her asking.
     If you look for opportunities to help your family out and make them feel special you will be very needed indeed. Be their fan club and you'll be the highlight of their day every day, Derald deraldg@earthlink.net


Scott B's March 29 reply to Craig's March 25, 2002 - Hi Craig, As a 32 year old DCM sufferer, I can appreciate what you are going through. You have a right to feel sad about your situation. All of your feelings are very justified. It is very important that you try to heal yourself first, before you try to tackle all these other problems. Financial problems and relationship problems are hard enough for healthy people, let alone us.
     Is it fair? No! We know from experience that things are always the worst when you are feeling lousy. If you can improve your condition, you will have more energy to address the other serious problems in your life. I would suggest counseling for yourself. You need some support.
     You cannot change the decision your wife has made, but you will still be able to see your child. Who knows? If you show a positive attitude, your wife might come back (if you still want her). Not everyone can handle traumatic events such as heart failure. One thing is for sure: if you let all the negatives bring you down, it is a slippery slope. She will not want to spend time with someone who is completely negative. I was so sick when I was diagnosed, I thought I only had a matter of days left. Six months after diagnosis I have been feeling pretty good. I am back to the physical activity (team sports) I was doing before. I also decided to get married (next month). I plan to have children as well. You are so lucky to have a young child to make life worth living. Work to feel better so you can spend more time with him. Scott.Brown@clarica.com


Jon, March 30, 2002 - Hi everyone, Well, the forum forms are up and running, as far as I can tell. My e-mail is working and most - but not nearly all - of my pages are functional. The servers will be twitchy for awhile but should settle down as I get things organized and switched over to mainly just one server. Thank you all for your patience. ;-) Jon.


Joe S, March 30, 2002 - Hey, Are we all idiots? I went to the surgeon Thursday and all he told me to do was shut up and listen. Within minutes he determined I was having a problem, which was what I was trying to tell him, and he ushered me downstairs to the cardiologist. Well, I found out they still didn't want me to say anything. The surgeon kept telling me to shut up. I found out for the first time that they took arteries out of my left arm and legs - nice to know; that my condition was much more serious then I was told; that it will now take up to 6 months to get well. But every time I opened my mouth to ask a question, I was shut up. They added 25mg Aldactone (spironolactone) and 0.25mg digoxin (Lanoxin) to my meds and now I am so spacy I can't even remember my name half the time. The surgeon actually got mad at me for questioning him. Does anyone have any ideas? jes@gbis.com


Rob C, March 30, 2002 - Hello all, I had been taking an ACE inhibitor (prinivil) for about 9 months before having an angioedema episode causing swelling in the back of my throat. The docs temporarily substituted hydralazine/nitrate but after my latest echo, I'm not on that combo nor the ACE inhibitor. I'm concerned that not taking this portion of meds will eliminate improvement (beginning EF of 25% increased to 40% and I feel okay) shown while using them for the past year since being diagnosed a year ago, particularly since everything I read endorses the use of ACE inhibition or equivalent for the duration.
     Should I suggest an ARB such as Cozaar (losartan) as a viable alternative to the ACE inhibitor? Or is this so closely related or similar in make up to ACE inhibitor as to make a repeat of angioedema likely? If anyone can assist or has experiences related to this, it would be greatly appreciated. Thanks, Rob. robert40@home.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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