The paperwork never ends The Archives
September 16-31, 2005 Archive Index CHFpatients.com

Jon 9-16     Jon health update
 
Tom K 9-16     is bicycling an okay exercise?
 
Jon's 9-16 reply to Tom K's 9-16     yes it is
 
Tony M 9-16     does anyone have nightmares like these?
 
Rena B 9-16     seek Diovan information
 
Jon's 9-16 reply to Rena B's 9-16     low blood sodium
 
Richard M's 9-16 reply to Peter S' 9-14     stem cell therapy
 
Jon's 9-16 reply to Richard M's 9-16     stem cell therapy
 
Elaine F 9-16     what's next?!
 
Patricia P 9-19     symptoms after plane flight
 
Jon's 9-19 reply to Patricia P's 9-19     see a doctor right away
 
Margaret D's 9-19 reply to Tony M's 9-16     sure sounds like sleep apnea
 
Tony M's 9-19 reply to Elaine F's 9-16     what's next?!
 
Tom S 9-19     wanting to believe, be skeptical
 
Peter S 9-19     seek EPS experiences
 
Mary Anne's 9-19 reply to Mary's 9-10     experience stopping amiodarone
 
Mary Anne's 9-19 reply to Bill H's 9-9     foods and gout
 
Mary Anne 9-19     pacemaker implant coming
 
Jack H's 9-19 reply to Elaine F's 9-16     can my heart function really improve?
 
Glenn R 9-20     post-surgery skin problem
 
Lisa's 9-20 reply to Patricia P's 9-19     see a doctor right away
 
Julie B's 9-20 reply to Peter S's 9-19     EP study experience
 
Dale E 9-20     urgent prayer request
 
Chuck F's 9-21 reply to Jack H's 9-19     Dor procedure, improving heart function
 
Norma L's 9-21 reply to Dale E's 9-20     I'll pray for your dad
 
Joseph S 9-21     can EF improve but still feel lousy?
 
Candy B 9-21     ICD question and more
 
Jeannine L's 9-22 reply to Tom S' 9-19     further info on my stem cell treatment
 
Patricia P 9-22     will be seeing my doctor
 
David W 9-22     update, doing better
 
Steve W 9-24     update, doing better
 
Lisa's 9-24 reply to Patricia P's 9-22     immediate treatment needed for stroke
 
Jack H's 9-24 reply to Patricia P's 9-22     immediate treatment needed for stroke
 
Donna M 9-24     does anyone have a cough like this?
 
Dale E 9-24     thank you, and prayer request
 
Cathy D 9-24     update on my husband
 
Elaine F 9-24     you can get better, reversing remodeling
 
Lowell P 9-26     can I get a copy of my test results?
 
Jon's 9-26 reply to Lowell P's 9-26     getting a copy of test results
 
Peter S 9-26     official heart failure guidelines
 
James 9-26     how to beat a cold's congestion?
 
Debbie M 9-26     thanks for help and support
 
Jeffrey Z's 9-26 reply to Elaine F's 9-24     interested in pacemaker
 
Marty C's 9-27 reply to James' 9-26     saline solution for sinus relief
 
Beverly C 9-27     why does my EF rise during exercise?
 
Jon's 9-27 reply to Beverly C's 9-27     EF rise during exercise
 
Karen S 9-28     seek working and disability experiences
 


Jon, September 16, 2005 - Hi everybody, I got to the medical imaging center and discovered the CT scan orders called for dye. With recent kidney function tests showing reduced kidney function, I refused the dye. I also couldn't get a regular CT scan without dye because no one thought to ask me if I could hold my hands above my head for 10 minutes, which I cannot, due to past shoulder injuries. So I got a short CT scan with no dye. Whether that will do any good as far as seeing what's going on in my chest, I don't yet know.
     Also, apparently my insurance company won't pay for some of the drugs my doctor prescribed and after checking the online prices, I just won't be taking them. The prices are simply beyond my reach (about 2500 dollars a year US) so it looks like I get to put up with these symptoms for the long haul. Hey, at least I have practice! <g> Jon.


Tom K, September 16, 2005 - Hi, I was diagnosed with heart failure two years ago. My EF was 25 and now is back to 55%. I also have diabetes, which I think I control pretty well. I have neuropathy in my legs and sometime it is hard to walk, so I took up biking. I ride at least an hour a day, am 55 years old, and want to know if biking is okay. I have never seen it mentioned in any exercise routines here. I am also bothered with bursitis in my shoulder and hips. Thanks, Tom. tkkaczs@aol.com


Jon's September 16 reply to Tom K's September 16, 2005 - Hi Tom, Biking is fine for your aerobic exercise. It is mentioned at chfpatients.com/faq/exercises/exercise_endurance.htm#cycling. I know how you feel in some ways since I have bursitis in both shoulders and both hips, and have a condition very similar to neuropathy in my lower legs and feet. Sure makes it hard to motivate to do that aerobic workout every day, I can tell you! Jon.


Tony M, September 16, 2005 - Hi everyone, When I was first diagnosed with cardiomyopathy in 2001 my first cardiologist asked if I had nightmares and I responded yes. I was wondering since I have them a lot how many do you other readers get? Mine are usually about me choking and not getting enough air. I dream my throat is clogged with paper or food, and I can't clear it out. Or I will be stuck in a confined area where I feel trapped and cannot breathe because my chest feels confined and I feel I cannot breathe while these dreams are going on. My wife wakes up with me gasping sometimes from these dreams.
     I had a sleep test done when I was diagnosed in 2001 but I didn't have a sleep apnea according to the sleep clinic. I even feel like I pass out sometimes when I have these dreams and can't seem to breathe during the dream. They are so real to me that when I wake up I am sweating from the experience.
     Last year when my ejection fraction dropped from 50% to 25% or less, the dreams came back and got worse so I know they are related to my oxygen deprivation. Even when the ejection fraction had risen back up to 50% for awhile I still had them, just not as bad. Does anyone else get these kind of dreams or nightmares? Tony M. ynotmyrick@yahoo.com


Rena B, September 16, 2005 - Hi, My mother was put on Diovan HTC (I am posting for her as she is computer illiterate) for high blood pressure and since then, has been hospitalized twice in a one and a half month time frame for lack of sodium. She was wondering if Diovan HTC can rob you of your sodium.
     I've looked at the Diovan web site but found no information pertaining to my question. Of course, why would a product web site give information on something that would make you not use their product? Anyone with information would be truly helpful. stupid_thing@livejournal.com


Jon's September 16 reply to Rena B's September 16, 2005 - Hi Rena, Do you mean low blood sodium? I ask, because this usually indicates poor prognosis (further worsening of heart failure) if the cause is not corrected. For that reason, her cardiologist ought to be all over her looking for the cause, immediately. How did they spot this - through routine blood testing or because her symptoms got so bad they did non-routine testing? Jon.


Richard M's September 16 reply to Peter S' September 14, 2005 - Hi Peter, Very good post. I would like to add on that there are stem cell tests going on all over world and have proven so far that they are working to some extent. However, we must not forget it is too early to start jumping up and down. It is so far looking good. Right now all we can do is hope it works and there is nothing wrong with having a little hope.richard.malczewski@comcast.net


Jon's September 16 reply to Richard M's September 16, 2005 - Hi all, I agree that some stem cell trials have shown good results. I just wish there were better-designed and better-funded trials underway in more places. One problem with recommending stem-cell therapy is that there are many different kinds of treatment going under that name, and they are not at all alike in many ways. That makes it a confusing issue. I keep watching for some kind of breakthrough in the field or a more clearly effective way of using adult stem cells. The promise (hope) is indeed there but the actual methods to make it work in large patient groups reliably, just haven't appeared yet that I have seen. Jon.


Elaine F, September 16, 2005 - Hey Jon and all other readers, I got a good little sarcastic laugh out of your "What's next" sign-off on 9-14. I've been a reader and sometimes poster on this site since March of 1999. My diagnosis of IDCM and CHF in September of 1998 and then breast cancer in May of 2000, with all the surgeries, chemos and radiation that go with that. I got my BiV pacer in January of 2001.
     My last echo in July this year says my heart is good to go, having reversed the remodeling of a very enlarged heart back to normal size, EF up to 40%, working at a job being on my feet all day and almost feeling good and normal most of the time. Guess what? Distant breast cancer recurrance with metastases in liver, lung and bone! Back to the chemo lab after 3 months on Femara with no good results, my hair already coming out after one treatment, set up today for a Medi-port placement, (my veins are shot). This is all to try to control the cancer - curing it is not an option at this stage.
     Sorry for the venting, I just totally felt the "What's next?!" My prayers for all of you here, this site is truly an act of God by way of Jon. I know He is what gets me through. Elaine. heartfelt16e@aol.com


Jon, September 19, 2005 - Hi all, Sorry for a no-post weekend. I am having trouble sorting out symptoms caused by illness from drug side effects, so I have been chopping "miscellaneous" drugs out of my life. Week before last it was Celebrex for my arthritis and bursitis that I stopped taking. Last week, it was sleeping pills that went bye-bye so it's been tough keeping up on my exercise, much less the web site. I'm actually doing the unthinkable this week - eating packaged food. I'm just too tired to cook. Funny thing is that I think it's harder on my wife than on me. Jon.


Patricia P, September 19, 2005 - Hi Jon, I am from Louisiana. I have CHF and IDCM. I went to a conference in Las Vegas last week and had difficulty after landing at the airport. My face was tingling, I had slurred speech, confusion and knew what I wanted to say, but couldn't get some of the words out. It was scary. After a few hours, I felt better, but still had some confusion (forgetting things) for a day. I did not see a doctor. The flight home was okay and I am tired, but otherwise feel okay. What do you think? Thank you for all you do for us CHFers. Patricia P. pgp24815@aol.com


Jon's September 19 reply to Patricia P's September 19, 2005 - Hi Patricia, See a doctor immediately. You may have had a stroke. I am not saying that you definitely did, but these kind of symptoms are nothing to "put off." See your doc now - via a hospital emergency room if necessary. Jon.


Margaret D's September 19 reply to Tony M's September 16, 2005 - Hi Tony, I'm sorry to hear of your sleep problems. Even though you had a negative sleep test in 2001, I would bet a lot of money that you do indeed have sleep apnea! Was it a certified sleep lab that did the test? Not all sleep labs are alike! See if you can convince your doctor to repeat the test or at the very least, do an overnight oximetry to see what your oxygen levels are at night. I think you'll be glad you did. mdavis10@tampabay.rr.com


Tony M's September 19 reply to Elaine F's September 16, 2005 - Hi Elaine, Your letter about what's next is right on target for a lot of readers. I have had 6 surgeries since I was diagnosed with CHF and diabetes in 2001. Five of the surgeries were orthopedic, one was to remove 18 inches of colon (diverticulitis inflammation). I am recovering from a second neck fusion surgery done 6 weeks ago.
     I had a part time job two years ago taking cancer patients to and from their house to a cancer center for treatments. I knew many many people who were sicker than I was and it made me stronger and smarter about life and health. Last year while I was recovering from my first neck operation I had an uncle and aunt from different sides of my family die of cancer. They both lived just a few blocks from my house. I visited them almost every day. They died about 2 weeks apart. I had my yearly check-up right about the time they died and my ejection fraction had dropped from 50% to 25% and I too felt "What's next?!" when that happened.
     I am sorry to write so much but I know how you feel when you're fighting for your life and just when you think you're gaining ground, something else happens. You're are in my prayers Elaine. Tony M. ynotmyrick@yahoo.com


Tom S, September 19, 2005 - Hi everyone, It seems that a little humor in a CHF forum is less than appreciated by some. Too bad, I often heard that laughter is the best medicine and I am going to be one to chuckle himself all the way to the grave. Stem cell therapy is one of the "cure du jour" measures that desperate people who will try anything seem to gravitate toward. Believe me, if stem cells were really doing the job scientists say they will, there would be no need for the CHF forum except to tell you how to get the therapy!
     My mother went blind when I was 8 years old and I watched her blow thousands of dollars and suffer the tortures of the damned on cures that never would work, even given today's science.
     Jon himself said he has to forgo a $2500 per year medication that was working because of lack of funds. So in the very same forum we have a case of someone who either through luck of birth or good fortune of someone else, or extra disposable income, or maybe just blew everything on a last chance pie-in-the sky option. We can't advocate others do it based on that single experience.
     While I am very skeptical of any offshore miracle cures, if the person experienced some relief that is truly nice. However, personally I doubt it is as reproduceable as the salesmen she was dealing with really want the general public to believe. Be skeptical or you could end up on the end of a very short stick indeed. bigheart@muchomail.com


Peter S, September 19, 2005 - Hi all, Next week I have a consulation with an EP specialist referred by my cardiologist. I have been (and still am) reluctant to have an EP test due to its invasive nature, remote but possible risks, the trauma of inducing or trying to induce a potentially fatal arrhythmia (which would then be "corrected" of course), and perhaps nebulous results for someone with an EF of 38% and no history of arrhythmia. My doctor looks to the test as a prophylatic way to justify an ICD. I am not knocking the test, which clearly has its place in HF therapy, but would be immensely interested in hearing from anyone who has had the test done and who has any comments, pro or con. PeterSperl@cs.com


Mary Anne's September 19 reply to Mary's September 10, 2005 - Hi, I was on amiodarone (Cordarone) for about a year and knew of the possible side effects. I had had two transient spells of a-fib and V-tach (post-surgical in the operating room). I decided to take myself off the drug, but did it gradually. Anyone deciding to stop this drug, especially if you've been on it for awhile, might be wise to do it over a period of time. As I understand, it could be risky to just stop suddenly. mameredith@nauticom.net


Mary Anne's September 19 reply to Bill H's September 9, 2005 - Hi, There are quite a few foods high in purines which will contribute to an attack of gout. There are many sites on the Internet where this info can be found. Go to Google, type in foods and gout, and you will get lots of info. Dietary exclusions can certainly help but gout can be a result of decreased kidney function. Cherry juice concentrate (unsweetened) seemed to really help my husband. He hasn't had an attack of gout in years. mameredith@nauticom.net


Mary Anne, September 19, 2005 - Hi everyone, I will be going into the hospital 9/19 to start Lovenox prep for an ICD implant around Wednesday. I believe the surgeon will be implanting a Biotronik unit (as requested by my cardiologist and me). The surgeon wants to put in a Guidant unit. Don't I have some say in this? Initially, I was to receive a biventricular pacemaker but apparently I'm not sick enough to get this type. I guess that's a good thing. My EF is about 30% but I am able to do just about all normal activities. So, wish me well! I'll let you know how this goes. mameredith@nauticom.net
 
Jon's note: Yes, you have say in this. However, in today's medical community - often too arrogant to actually listen - you have to make yourself heard by everyone involved, not just one doctor. Your health insurer, all doctors, surgeon/operator, anesthetist, and everyone else needs to hear from you , the patient.


Jack H's September 19 reply to Elaine F's September 16, 2005 - Hi, Can one really reverse the remodeling? I was diagnosed with an EF of 30% eleven years ago. It is now around 15%. This dilated cardiomyopathy is a result of a 21-year-old MI with muscle damage the size of a quarter. I was forty at the time of the MI. I had CABG x 3 at age 52 and CABG x 4 at age 58. I am now 61. Any advice other than getting my affairs in order? I also rely on my personal relationship with Jesus Christ for comfort and freedom from anxiety. Jack. firstngoal@comcast.net


Glenn R, September 20, 2005 - Hi all, I had CABG surgery 7 weeks ago to bypass part of my LAD that dissected within a myocardial bridge while I was biking. I am 45, in excellent shape, and had no symptoms before my heart attack.
     I have one nagging issue that is driving me crazy. The skin around my chest, shoulders, and neck is very dry and sensitive. I cannot stand wearing a shirt because it feels like I have a severe sunburn even though my skin looks normal. I contacted the doctor's office because I thought the metoprolol I'm taking was causing it. They said what I am experiencing is just part of the normal healing process. Is this right? It really is driving me crazy. I'm sitting here at work totally miserable because the skin around my neck and upper chest feels like it has been chafed raw by my shirt.
     I have been putting Aveeno Ultra-Calming Moisturizing Cream on the problem areas (not on the incision), but that only helps a little. glennrey@mindspring.com


Lisa's September 20 reply to Patricia P's September 19, 2005 - Hi Patricia, My mother had symptoms like that in December, and it was a stroke. You need to be seen by a doctor immediately. Do not wait. The sooner you get treatment, the better. Good luck. zeigler@zbzoom.net


Julie B's September 20 reply to Peter S' September 19, 2005 - Hi Peter, I had an EP study done in July of 2004. My EF at the time was 13%. I had been experiencing a myriad of arrhythmias and could not be induced. I had no problems at all during or after the EP study. I was a little nervous at the time not knowing what the outcome would be until I woke up. They told me if I was induced then they would take me on to surgery to implant the ICD.
     In March of this year I did end up having a biventricular pacemaker implanted because of the low EF and a LBBB. The EP specialist told me at the time that they had done a report on EP studies and they can't be relied upon to induce the fatal arrhythmias. They go by EF. All that proved correct because 2 months after my implant, I was shocked twice in one evening. I had VF and my heart rate had gotten up to 300 beats per minute. They told me when I was interrogated that I would have died without the device. This is just my take on an EP study. jbeery827@one-eleven.net


Dale E, September 20 reply to Peter S' September 19, 2005 - Hello everyone. My dad who has struggled with CHF since December of 2001 is now on what appears to be our last option. His heart failure has progressed into what the doctors feel is either liver failure or cirrhosis. He is having a heart and liver biopsy Wednesday to find out how bad both are, and so the doctors can decide whether a heart valve replacement will help dry out the pressure in his liver so it can begin to function again.
     Currently he sleeps about 20 hours a day, is on a liquid (boost) diet because of no appetite, and he is totally out of it mentally from the liver toxins. We are hoping and praying that the biopsies will leave us with some options but it could potentially be the end of the road for my dad.
     I appreciate this web site and all the people here who put in the time to try to help others out. I ask if anyone can remember to pray for my dad (his name is David) tonight or tomorrow. He has only had CHF for a little over 4 years and he just turned 61 in July. We were hoping to have him a lot longer than this so the next few days are going to be tough on our family. God bless.
     1st Thessalonians 4 - "But I would not have you to be ignorant, brethren, concerning them which are asleep, that ye sorrow not, even as others which have no hope. For if we believe that Jesus died and rose again, even so them also which sleep in Jesus will God bring with him. For this we say unto you by the word of the Lord, that we which are alive and remain unto the coming of the Lord shall not prevent them which are asleep. For the Lord himself shall descend from heaven with a shout, with the voice of the archangel, and with the trump of God: and the dead in Christ shall rise first: Then we which are alive and remain shall be caught up together with them in the clouds, to meet the Lord in the air: and so shall we ever be with the Lord. Wherefore comfort one another with these words." homecapitaldale@hotmail.com


Chuck F's September 21 reply to Jack H's September 19, 2005 - Hi Jack, Make sure you are talking with a heart failure specialist for starters. I am 46 years old. I had an MI in 1996 and another in 1999. From these I developed class 3 heart failure as well as an aneurysm in the left ventricular and septal wall. My EF had dropped to a low of 17 but it averaged in the mid to low 20s. I couldn't even walk 50 feet and as a Nurse Manager, that didn't go with work well.
     I was so fortunate to be able to go to the Ann Arbor VA where the University of Michigan Medical School is also affiliated. I was able to be seen by Dr. Peter Vaitkavicius of the U of M at the VA and he referred me to Dr. Kirsh, a renowned cardiac surgeon. I met the criteria to have the Dor procedure (left ventricular reduction cardiomyopatchplasty). This is where they surgically remove the nonviable tissue (damaged muscle) and cover the area with either pig or Dacron grafts and reshape the ventricle to a more normal shape. This procedure has not been done a lot (a few hundred) but it is being done more all the time. Here is a web page about it: http://www.clevelandclinic.org/heartcenter/pub/guide/disease/heartfailure/dor.htm.
     I had this surgery on October 25th and seven days later I left the hospital able to walk 100 feet. I now can walk about a quarter of a mile (on a flat surface) and am back in Karate (No physical contact to my chest of course) and I don't go for more than 10 minutes without a break. My EF is now in the low to mid thirties.
     Yes one can have things reversed, however it all depends on all your conditions. Please discuss this option with your heart failure specialist. Without knowing your history I can't say if it would be possible. One last thing - live strong! and godspeed. chfrancis@adelphia.net


Norma L's September 21 reply to Dale E's September 20, 2005 - My heart goes out to you, Dale. It is so ununsual to hear people ask for prayer. Most people knock at you right away when you mention God and prayer. I will surely be remembering your dad David and family in prayer. In fact, I have Bible Study in my home and tonight is our night to meet. I am being lead into a prayer cloth ministry, where we anoint the cloth with olive oil and pray for the person the cloth is going to. It is a comfort to one who needs to have their faith uplifted and to have that blessed assurence God loves them and someone is holding them up in prayer. I was diagnosed with CHF in June of 2003, but I am 82 years young and am doing very well! nvl@pennswoods.net


Joseph S, September 21, 2005 - Hello everyone, I haven't posted in awhile but I am a faithful reader. I suffer from cardiomyopathy with an ejection fraction of 25%. I am on beta-blocker, ACE inhibitor, aspirin, blood pressure medication. Although my EF seems to be improving, I feel so terribly lousy consistently it's a way of life now for me. I am 37 years old.
     By talking to my counselor on a weekly basis I am gradually dealing with my situation (we know it is not easy). I have just been turned down for SSD and am now seeking reconsideration through my attorney. It is horrible the way we are treated by that system. They said, although you have some heart problems and some depression you can still do some kind of work like a cashier which you worked for 3 months - even after their consultative examining psychologist said I am markedly impaired to deal with day to day work stresses and pressures. The system is horrible.
     Anyway, is it unusual to have your EF rise significantly yet you feel horrible? Is is the meds or can I still have CHF? cdz25@verizon.net


Candy B, September 21, 2005 - Hi everyone! I am new to this site and am very glad I found it. Two years ago in August of 2003 I was diagnosed with CM and CHF and was shocked that at forty-five this was happening to me. Even though I have a great support group in my husband, family and friends, sometimes I feel very alone. Reading the messages on here and being able to post messages on here will help.
     In my situation they are linking my CHF to me being a carrier of Duchennes Muscular Dystrophy. My son died of Duchennes thirteen years ago in November. My sister, who is also a carrier, has a son with Duchennes who is twenty-two. When she had her son, she had CHF and almost died when she was 24. She had a heart transplant in 1991 now has a pacemaker and now she might be getting bypass surgery.
     Cardiomyopathy is associated with Duchennes patients and that carriers can have symptoms of Duchennes but not have the disease. I just had a doctor's appointment on September 15 and I am doing real well. My heart has gotten smaller and is a little healthier.
     I seem to be having more palpatations though and they want to put a defibrillator in me. I thought I was doing good because I feel better now than I have in the last two years. This is scaring me. What can I expect? I don't know if they link this to me being a carrier because they don't know how I got CM and CHF or that it is why I do. Does anybody have any ideas or are maybe in a similar situation? handy69free@yahoo.com


Jeannine L's September 22 reply to Tom S' September 19, 2005 - Hi Tom, It is not my intention to sell adult stem cells to anyone. My only desire was to share my experience with a very new medical procedure. This field is new and not everyone is medically eligible. My procedure was performed by American surgeon Dr. Amit Patel who spent four years doing randomized clinical studies in South America. He has now been approved by the FDA to begin trials in the US. I carefully reviewed his credentials and that of the company offering the procedure. I consulted with my personal cardiologist who investigated and gave me his blessing.
     My doctor did his own test at the end of August and concurred with the results from the MRI done in Pittsburgh a week later. I have gone from class 3 class one in three months. My EF has gone from 25 to 30% for 12 years to 41%. My cardiologist has changed his mind about my needing an ICD. I have had cardiomyopathy for almost half my life. I believe without a doubt that I prayed for a miracle and that is what I received.
     Yes, we had to mortgage our home to pay for it. But luckily, my husband loved me enough to take the risk. Now I may actually be around long enough to see my son grow up. I know that there are a lot of skeptics out there, luckily I have faith. jeannine_lewis@yahoo.com


Patricia P, September 22, 2005 - Hi Jon and Lisa, Thanks so much for your replies. I called my cardiologist and his nurse agrees that it could have been a stroke. She told me to contact my PCP. My PCP said that I could have had a TIA and to see her sometime this week. She said if it happens again to go to the ER. I have not been able to get an appointment for this week. I spoke to the nurse today and she will try to get me in tomorrow, because the doctor will be out on Friday. She will let me know. I hope to know something soon. Thanks again for the advice. I am now taking it very seriously. Patricia P. pgp24815@aol.com
 
Jon's note: Uh, this is just me, but if I thought I might have had any kind of stroke and my doctor didn't work me in to his schedule the very same day I called, I would be hunting a new doctor.


David W, September 22, 2005 - Hi everyone, I used to post quite a bit but have not had an e-mail address for over a year. I am doing pretty well. I am working part-time, which I never thought I would be able to do again. I had gastric bypass surgery two years ago and it has helped me tremendously. My EF and my heart are really not much better but losing over 100 pounds has made it so much easier on my heart. I can even climb stairs now. I have to climb stairs at my job. For anyone who is morbidly obese, have surgery or do whatever you can to lose weight, it will really help you.
     I am feeling a little worse since I started working, but I am hanging in there. I have a fairly easy office job where I can sit down. I mostly answer phones and sell theatre tickets at a show in Branson, Missouri. It seems like I have a life now and I don't feel so useless anymore. I have found a wonderful church with great people here in Branson. God led me here last year though I really didn't want to come. I sure am glad He is in charge because He knows what is best for us and guides us even though we can be a little mule-headed at times.
     For new people here, there is hope, you can get better. It took almost 5 years for me to improve but I did. I hope everyone is doing well. daveygbs51@msn.com


Steve W, September 24, 2005 - Hi gang, It's been a couple of years since I posted. When struck by heart failure, my ejection fraction was 25%. I was pretty weak for age 50. I began trying to cope with my heavy medication protocol (Lasix, Coreg, nitro, plendil, and Diovan) and diet. Well, recently I had another ejection fraction test and cath, and my score was 75! Please note a normal score is 55%. I attribute the improvement to my drugs. My new doctor took me off nitro because it made me nod off. Dr.William's photonutrient program (cardio-plus, cataplex, and A-C Carbamide) and Dr. Sinatra's Q-Gel Plus. I also walk 30 to 40 minutes 5 times a week. I also do beachbody exercise routines from time to time (videos from TV). I have also gone vegetarian, which also helps, although I feel a bit weaker. I plan on returning to work soon although I have been writing a screenplay, now in rewrites with a Hollywood Pro as an editor, during my sick years. I read Dr. Bruce West's newsletter, called Health Alert, and I suggest you do too if you want to enjoy similar results. mrwrightaide@yahoo.com
 
Jon's note: I don't want to pee on anyone's parade here, but too-high an EF is just as bad news as too-low EF. You are at the absolute upper end of normal - any higher and it could mean serious problems. If it were me, I'd ask for a re-check.


Lisa's September 24 reply to Patricia P's September 22, 2005 - Hi Patricia, I have to agree with Jon - I would be searching for a new doctor - pronto! I cannot express how serious this is. I have been through strokes with my mother and my father. My mom is 69 and my dad is 75 years old. My dad is also a CHF patient with DCM, diabetes, a defibrillator, and sleep apnea. When he had his stroke, I was with him, recognized the symptoms and got him to the hospital immediately, which probably saved his life.
     My mom's doc explained to me that there is no such thing as a mini-stroke. You either have a stroke or you don't, kind of like you are either pregnant, or you are not, with no in betweens. He said recovery and prevention of future, more significant strokes depends on how fast you get treatment and the proper medications.
     The day my mom had hers, her emotions were all out of whack, and she couldn't get her words out. She was very dizzy and saw spots. She was hospitalized for three days, and had loss of speech, vision, hearing, and use of her limbs on her right side. That was nine months ago, and we are very fortunate that she has recovered about 90% and is back to work. However, her reasoning and cognitive skills are still off and she is still not permitted to drive.
     I am not trying to scare you, but I plead with you to get examined and begin treatment. If you haven't been seen, get a new doctor or go to your local ER. I have been reading and posting to this board for over four years, and I can't even express what a blessing it is. I have learned so much here and I believe it has been life-saving information on more than one occasion. Good luck! zeigler@zbzoom.net


Jack H's September 24 reply to Patricia P's September 22, 2005 - Hi Patricia, Take heed of Jon's note. For several months I would complain to my cardiologist and my internist that I thought I was having occasional TIAs. Both of them continually would listen to my carotids with their stethescopes and reply that it was probably just my medicine dosage. Finally the cardiologist ordered a carotid study and sure enough, my left carotid was 100% occluded and my right 70% occluded. Several years later my right was 80% closed. Three months ago, I had my right side stented. Unfortunately, the 100% occluded carotid cannot be repaired. My advice, request strongly that the non-invasive carotid study be done. firstngoal@comcast.net


Donna M, September 24, 2005 - Hi, My sister was diagnosed with CHF a couple of months ago and has been undergoing treatment. Her CHF was caused (or complicated) by atrial fibrillation. She is taking Coreg, Aldactone, Cardizem, Coumadin (warfarin) and Lasix - no ACE inhibitor. For the past 4 weeks, she has been suffering from a persistent cough producing small amounts of green phlegm with large amounts of white phlegm. She awakens every morning with a coating of white mucous in her mouth. Has anyone had these symptoms or know what could be causing them? She has gone to the doctor about it, but he really has no clue. Any help would be appreciated. Thank you very much. dometilia@sbcglobal.net


Dale E, September 24, 2005 - Hi everyone, Thank you all for your prayers, and Norma thank you for your kind words. We got the results back on my dad and turns out he has myopathy and cirrhosis so its the double whammy we were praying against. Yet God has given us peace and there is still a tiny door open which might lead to a possible heart/liver double organ transplant. There have been very few in the USA but Cedar/Sinais does them so we are hoping to get an interview. If you all could pray for that, it would be much appreciated. God bless. Dale. homecapitaldale@hotmail.com


Cathy D, September 24, 2005 - Hi, It occured to me that it has been almost 1-1/2 years since my 48 year old husband was diagnosed with CHF and 2 years since we found out he has sarcoidosis. I just wanted to give you an update on him, since he's not one to "toot his own horn." Eighteen months ago he was fighting for his life in CCU, half dead with septic shock. He was one of the lucky ones.
     The news is good and bad. The sarcoidosis has invaded his brain and heart, and his thyroid now. His lungs show evidence of fibrosis, stage 4 sarcoid, and pulmonary hypertension. But his heart function is better than ever thanks to the 14 meds he takes. He has really benefited from his BiV pacemaker. Without it, he would probably be dead by now.
     As of September 6, he has officially gone back to work full-time, something we never thought we'd see. His stamina is still low, but he has accomodations and at times works from home. But he is so happy to be back at work! And he can help with laundry, cook dinner, and get my youngest son ready for school in the morning, that's how much better he is!
     The last 2 years have given us a lot of time to think about what we want to accomplish in life. My husband has decided to take life by the throat and give it all he's got. We have looked fear in the eye and lived to tell about it. We recognise that even though he will probably not live a long life, that a full life is more desirable. Our kids are important, and our church. This is not the life we envisioned, but one we have come to embrace. I'm very glad to have my husband for however long it may be. georgecd@worldnet.att.net


Elaine F, September 24, 2005 - Hi There, Regarding the inquiries about reversing the remodeling, I just know that at my diagnosis, my left ventricle measurement was 77mm, very large! My last echo this past July after 6 plus years, the measurement was 55mm - normal! I truly believe that my BiV pacer has made all the difference for my specific case. Fortunately for me, I was the perfect candidate for the BiV. I also was able to immediately begin seeing a heart failure specialist at UAB after my diagnosis. He put me on all the right drugs, all the right tests, and gave me all the right information.
     I also dove into researching and reading anything I could find to educate myself. I used to be a radiology technologist, so it helped that I had medical experience and understood the medical terminology. My cardiomyopathy was deemed idiopathic, no MI or any exact cause. I don't know if that would make a difference. Stay positive, believe me, it helps! Good wishes to all! Elaine. Heartfelt16e@aol.com


Lowell P, September 26, 2005 - Hi Jon, I had an echocardiagram this week and would like to see the data it produced. In the past with this same doctor he has only told me my ejection fraction. Since that first echo I have learned a lot of things to look for. Do I have the right to demand that I be given a copy of the test results or is it simply up to the doctor whether he wants me to see the full report? I will see him next week and would like to be on solid ground when I talk to him. Thanks, Lowell. Lpepper3m@aol.com


Jon's September 26 reply to Lowell P's September 26, 2005 - Hi Lowell, You have every right to obtain your medical record at any time. The easiest way is to just have the doc let you eyeball the report in the office at your appointment. You can also fill out a written request for your medical record, which should include the report. If the echo was done somewhere other than the doctor's office, such as in a local hospital, you can fill out a medical records request there and you will only get tests and visits done at that location. Doctors' offices can charge so many cents per page for providing medical records so be sure you know what they're going to charge.
     Unofficially, most doctors will get you a photocopy of a single report right there in the office for free if that's all you want. I have my cardiologist fax me a copy of all my test results but my PCP makes me go the official request route although he shows me all the reports at my office visits. Jon.


Peter S, September 26, 2005 - Hi Jon, Thanks for posting the new AHA/ACC treatment and definition guidelines for heart failure, both the full text and your short version. Because of my own reluctance to have an ICD, I reviewed that part of the full guidelines in great detail, including footnotes. I also checked out your summary and it was excellent; I hope everyone reading your guidelines page recognizes all the work you must have put into it. PeterSperl@cs.com
 
Jon's note: Actually, I spotted a glitch in the official treatment recommendations, which Marc Silver is forwarding to the committee for correction. I think the AHA ought to make a donation to us! <g>


James, September 26, 2005 - Hello everyone, I picked up my first autumn cold a few days ago and it's absolutely killing me. It's pure sinus misery, and I am yet to find anything I can take for it. I get a few of these a year it seems. It's been that way the last couple of years now that we have kids, of course. In the past, I'd do Nyquil at night but of course we're supposed to avoid products that have pseudoephedrine in them. Near as I can tell, there are no other decongestants on the market - pseudoephedrine or phenylephrine (which I'm told we also have to avoid) are it.
     All the doctors want to give me are guaifenesin (expectorant) and dextromethorphan (cough suppresant). That's all fine and well, but it misses out on the key problem, which is the sinus congestion and drainage. I'm not suffering chest congestion or a non-productive cough, so these are pointless. Others have suggested a saline rinse and/or steam, both great suggestions for relief of acute symptoms but these solutions only last for a short period and then you're right back where you started.
     This bug is one of the worst I've had in awhile. It's kickin' my behind up and down the lane. I can hardly breathe. If I breathe in through my mouth it dries up and becomes increasingly painful. When I try to sleep, I first fight the breathing, finally fall asleep, then wake up half an hour later with a chest, nose and mouth full of gunk. Then I cough that up, clear my sinuses, and repeat. There has got to be a better way of handling this issue. <groan> James. jnj@spamcop.net


Debbie M, September 26, 2005 - Hello, I have used this site for a few months. My husband had CHF and he died on 9/09 of sudden cardiac death. I wanted to take a moment and thank everyone on this site for helping me with encouragement and words of advice. Jon, I will be sending a small donation at the end of the month for all the support this site had given me. I still have guilt because there were no symptoms at all, and he had just worn a heart monitor three weeks before. We were told he was having arrhythmias, but nothing acute and he was placed back on Pacerone. He went to the bathroom and that was it. He was dead within minutes. I guess you can look at it a lot of different ways, but I'm still so shocked at the suddenness. Thanks for everyone's support, and goodbye. dmcconnell@unioncentral.com


Jeffrey Z's September 26 reply to Elaine F's September 24, 2005 - Hi, I was just diagnosed with COPD and I'm sure I'm having CHF symptoms, like fatigue and nausea after walking. I am interested in a BiV pacemaker. Thanks. jdjiminy@optonline.net


Marty C's September 27 reply to James' September 26, 2005 - Hi James, I understand the misery you so eloquently described with the sinus drainage, difficulty sleeping, etc. The best advice I've received with our limited options came from an old ENT doc. He advised me to do saline flushes. Not the simple one or two squirts people generally think of but a good 1 to 2 ounces per nostril. You pour the saline in a small cup, like the dose cup for NyQuil, then you block one nostril and sniff the whole amount into the other nostril. It's gross, but it does the job very well and gives some relief for quite a while. The rest of this is that you can make your own saline with recipes readily available online. Check out Google and you'll find them. I hope it helps. Marty. padre45@aol.com
 
Jon's note: Don't forget that you don't swallow this! You take it in through the nose and then bring it up through your mouth and spit it out. Salt is salt is salt, and can cause edema.


Beverly C, September 27, 2005 - Hi Jon, I have a question about my ejection fraction. The test I had was a stress echo. I got two results: 30% at rest, 60% during exercise. I don't remember getting these two results in the past. It went from 25% at the heart attack (2000) to 50% a year later and now 5 years later has dropped to 30%. One of my symptoms now is shortness of breath that I notice a lot more while sitting still. Why does my EF go up during exercise? Thanks. macmember@comcast.net


Jon's September 27 reply to Beverly C's September 27, 2005 - Hi Beverly, A stress echo is generally used to spot possible ischemia, areas of the heart which are not receiving enough blood flow. Exercise enlarges healthy coronary arteries, which allows the hard-working heart to get more blood and thus more oxygen. A heart imaged immediately after exercise will show areas that don't receive enough blood or where heart wall motion is abnormal.
     You should see a rise in EF with exercise. If you don't, that indicates a serious problem may exist. Please note that a-fib, LBBB, COPD, or a pacemaker can all pretty much ruin the effectiveness of a stress echo.
     Why your EF has dropped at rest from 50% to 30% I don't know. If it were me, I would certainly be talking to my heart failure specialist to find out why, and to plan treatment options to improve my heart function. Jon.


Karen S, September 28, 2005 - Hello all, I was diagnosed with CM and CHF on 8/29/2005. On 8/30, I had a biventricular pacemaker/ICD implanted. I am age 46 and the damage to my heart muscle was caused by chemotherapy. I am a four-year breast cancer survivor. My question is about going back to work.
     How much are you all working? I am a single mom and I was just wondering if I will ever work full-time again and from what I have read, getting SSA disability is not easy. Thanks for your help. cowgirl94952@yahoo.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, 2005 Jon C.

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