The paperwork never ends The Archives
January 1-15, 2006 Archive Index CHFpatients.com

Jon 1-1     here we go again
 
Tom S' 1-1 reply to Pay Y's 12-29     driving with heart failure experience
 
Carolyn B 1-1     update on my daughters
 
Sandy N's 1-1 reply to Isabella K's 12-29     Florida CHF docs
 
Scott Brown's 1-1 reply to Ryan A's 12-27     it's just not possible to say
 
Scott Brown's 1-1 reply to Jimmy R's 12-27     driving with heart failure in Canada
 
Anil M 1-1     surgery reduced my EF, what does this mean?
 
Carol B 1-1     son just diagnosed, need advice
 
Jon 1-3     update
 
Jacky B 1-3     snail mail donation address change?
 
Jon's 1-3 reply to Jacky B's 1-3     snail mail address change
 
Anita S' 1-3 reply to Carol B's 1-1     check with the VA for possible eligibility
 
Sandy N's 1-3 reply to Carol B's 1-1     coping with heart failure
 
Scott B's reply to Carol B's 1-1     coping with heart failure
 
Carol B 1-3     questions for Jon
 
Jon's 1-3 reply to Carol B's 1-3     information, education are keys
 
Linda C 1-3     thank you all
 
Frances P 1-3     could this be heart failure?
 
Tom C 1-4     Coreg doesn't work for me
 
Jack D's 1-4 reply to Jimmy R's 12-27     to drive or not to drive
 
Anil M's 1-4 reply to Jon's 1-1     any ideas?
 
Jon's 1-4 reply to Anil M's 1-4     I'd get a second opinion
 
Jill M 1-4     any old-timers still around here?
 
Jon 1-5     note on posts
 
Jacky B's 1-5 reply to Jill M's 1-4     good to hear from you
 
Karen K's 1-5 reply to Jill M's 1-4     old timers
 
Roger H's 1-5 reply to Jill M's 1-4     old timers
 
Tom S' 1-5 reply to Jack D's 1-4     governmental madness
 
Carol B 1-5     thank you
 
Kirk S 1-5     thank you
 
Bob M 1-5     seek CHF doc in New York City
 
Charlotte N 1-5     scared of what lies ahead
 
Curt H 1-6     should I change from the ACE inhibitor?
 
Bonnie B 1-6     EF back to normal but very tired - anyone else?
 
Susie M 1-6     seek advice about increased symptoms
 
Susie M 1-6     please pray for Jon and his family
 
Jacky B's 1-6 reply to Charlotte's 1-5     take care of yourself too
 
Joy V 1-6     seek replies by e-mail
 
Jon 1-6     time for me to move
 


Jon, January 1, 2006 - Hi everyone, What's left of me crawls into another year still refusing to give up anything I love: God, family, this web site, or the joy of doing just about anything well.
     I'll be starting to pack the last room left unpacked later today, if I survive my workout first. <g> I finally got my meds updated on my bio but haven't gotten to updating my workout info yet, which has radically changed in the past 3 months. Soon, maybe. With this immune system problem that causes inflammation everywhere, I'm on a one-man mission to develop some muscle density to support my joints! Jon.


Tom S' January 1 reply to Pat Y's December 29, 2006 - Hi, I used to believe in being honest but frankly being honest with the state of North Carolina doesn't pay. In fact, it may well cost me my collision insurance and two automobiles. The automobiles would go bye bye if I can't find a collision policy after the state of North Carolina suspended my license because a doctor failed to submit a medical form on my condition within a specified period of time. The reason it was late was the clinic I was going to had been purchased by a hospital and the records were all in disarray. I was not informed of the changeover until it happened and it was almost two months before I even got a notice my license was suspended for lack of the medical paperwork.
     That is all by the way of telling you about my experience of driving with CHF. It started when I went for a road test to renew my license and the tester asked me a by-the-way question of why I had a handicapped license plate. Rather than tell him I had a bad back or hip, I said I had congestive heart failure, which was the wrong thing to do.
     Before they gave me my license (provisional for 30 days pending the paperwork) I was handed a packet of papers, 34 pages in all, that needed to be filled out by my cardiologist and so called family doctor, of which I have none. The first time things went fairly smooth and I actually got my cardiologist to fill in as my family doctor and he took care of that paperwork. Well, because now I was on the books with a medical condition, my license came up for renewal every two years and the paperwork had to be filled out each time I went for re-examination. The exam not only included an eye exam at the DMV, but a signs and road test.
     Then I was given the pile of papers to be filled out again, only this time I did not have the same cardiologist and I was having a heck of a time getting my family doctor, which I assumed is now the Veteran's Administration doctors where I get my meds and checkups from time to time. It gets a lot more involved than that but I can say my honesty has caused me nothing but trouble. The irony of the whole situation is that I bet I don't drive more than 10 miles a week and that's just within a three mile area.
     The VA doctors were on vacation and suddenly no one filled out any papers in a timely manner and I got a license cancellation notice in the mail. Not long after that I got a cancellation notice for my insurance and I am really disturbed more about that because push comes to shove I would drive without a license. I would almost recommend to anyone faced with the same question from their state DMV that they respond they have a bad hip and leave it at that. bigheart@muchomail.com


Carolyn B, January 1, 2006 - Hi Jon, I have not really sitten down at length for some time to read or make a post. My 2 daughters, who were diagnosed 10 years ago with DCM are now aged 19 and 21, and are doing well, although the older has declining function in heart but her heart size is remaining the same. Her doctor uses FS, which is at 15%. Wonderful, wonderful site. littleone@integrity.com
 
Jon's note: I hope that FS comes up some but it's good to hear that they are functioning well day to day!


Sandy N's January 1 reply to Isabelle K's December 29, 2006 - Hi Isabelle, I have a great doctor with the Heart and Vascular Institute of Florida. If you would give them a call, I'm sure they will put you in contact with a good CHF specialist. Call 727-724-0425. Their url is www.havi-north.com/North_Center/. Good luck and happy new year to you and everyone on this wonderful site! bleuskiiisgrl@yahoo.com


Scott Brown's January 1 reply to Ryan A's December 27, 2006 - Hi Ryan, I don't think anyone on this board would be able to suggest how long your grandmother has to live from the limited amount of data you were able to provide. I will that suggest her condition sounds serious, but meds could make a big difference. Perhaps she has had a blocked artery for years and it just caught up with her. We just don't know. Scott B. kitchenerguy@rogers.com


Scott Brown's January 1 reply to Jimmy R's December 27, 2006 - Hi Jimmy, My information is based on the cardiologists in Canada. They seem to suggest taking a license away when their patient has unexpectedly lost consciousness. Obviously, they do not want you driving a motor vehicle if this is an issue. Have you lost consciousness or become dizzy to the point you have become disoriented?
     If the cardiologist thinks he has addressed the conditions which caused problem, they should not have a problem supporting the decision to allow you to drive again. Your EF is relatively low, so perhaps that is the main concern? Scott Brown. kitchenerguy@rogers.com


Anil M, January 1, 2006 - Hi, I entered Cleveland Clinic with an LVEF of 20%. A major surgery with four bypasses along with a Dor procedure was done in November with the expectation that this would provide ample blood to the heart muscles and also help improve the efficiency of the left ventricle. I recently had an echocardiogram done which recorded an LVEF of 10%. In 2 months this had dropped by 50%! So the procedure instead of improving the LVEF had managed to reduce i! Is that normal? Does anyone have a similar case? What is it due to? Does an LVEF of 10% and this sharp drop indicate a rapid decline with possible imminent mortality? anil_malhotra@hotmail.com
 
Jon's note: How long ago was the bypass surgery/Dor procedure done? Who are your surgeon and cardiologist?


Carol B, January 1, 2006 - Hello all, I feel like I am in a nightmare but can't wake up from it. My 26 year old son in the Navy has been found to have heart failure and he is being discharged. January will be 6 months since he enlisted. He is on Toprol-XL only. Today I found out he will have no insurance. Can this be true? He has a wife and little baby. What should we do now? We are all so scared. Please advise. cbarber77@bellsouth.net


Jon, January 3, 2006 - Hi everyone, I'm done with all but that last-minute computer/food prep/clothes/bathroom stuff packing now. Honestly, I'm just gonna rest for a few days since I am absolutely worn down, then I have to drive to St. Louis, back to Kansas City, then back to St. Louis, loading a pickup full of stuff on that last trip that I will then have to unload - so I'll then be resting again. <g> We'll be living in St. Louis January 10th. Jon.


Jacky B, January 3, 2006 - Hi Jon, Shall I use the same address as before for my check? Best wishes to you and Linda in the new year and with your move. Jacky. jackymwb@earthlink.net


Jon's January 3 reply to Jacky B's January 3, 2006 - Hi Jacky and everybody, Just before our move, I'll change the company contact information online. The Post Office will be forwarding all postal mail sent to us at the old address to our new address for awhile. Beginning the 10th of January, 2006, our new street address will be

CHFpatients.com, Inc.
4 Castlewood Court
St. Peters, MO. 63376-2408

All electronic donating will remain unchanged, although our letters of receipt will show a different return/company address. The changing phone numbers and address changes are as big a pain as moving - literally. To those who have my cell phone number, please be patient - as soon as I have the new cell number, I'll pass it along. Jon.


Anita S' January 3 reply to Carol B's January 1, 2006 - Hello Carol, I'm sorry to hear about your son's heart failure. He should be able to go to the Veteran's hospital for his care. Find out if he has any service-connected disability. If he is 100% service-connected, his wife and baby will have champ VA insurance. Have him call the VA hospital and ask for the eligibility department. Someone there should be able to help him find out where he can get medical help. Take care. Anita. dreamersila@netscape.net


Sandy N's January 3 reply to Carol B's January 1, 2006 - Hi Carol, I'm so sorry to hear of your son's troubles but first, "Don't, give him a death sentance just yet." As everyone on this board had to learn, heart failure is an illness that can often be controlled. Then have him sign up for SSD.
     He can get the help he needs. It's all scary when you first hear of this but then, time will take care of everything. Invite your son to join this board and he will learn all he needs to know, to keep himself healthy enough to enjoy his wife and baby for a long time to come. bleuskiiisgrl@yahoo.com


Scott B's January 3 reply to Carol B's January 1, 2006 - Hi Carol, Congestive Heart Failure is all too common in young people. I was 31 years old when I was diagnosed. It is not a death sentence. There are some important things I would suggest he needs to do right away.
     He should feel better when he can get rid of the fluid retention. Right away, he needs to cut out sodium consumption until he gets the right meds to get rid of the fluid retention. He should also cut back on fluid intake right away (unless he is still working out and sweating a lot). These are things he can do on his own.
     Your son needs to get a cardiologist so he can get on the proper meds right away. This will likely include a beta-blocker and an ACE inhibitor. He may need to get on a water pill such as Lasix. This may be the biggest relief of symptoms in the short term. If he has swelling, shortness of breath or fatigue, this will really help. A Navy doctor should at least prescribe the water pills.
     There are some things to keep in mind. Up to 50% of HF is due to a virus. Many of these CHFers will regain heart function. If he is one of the other 50%, there are good meds which work well for most people to manage the disease. For example, I was 31 years old when diagnosed and I will work a 40 to 60 hour week (in an office). I play sports recreationally in competitive leagues, although I have some limitations.
     It's normal to be concerned. It can take about a year to adjust to the new meds. Please let me know if you have any questions. Best of luck to your son. I hope he qualifies for a program to help pay for the medical bills. Scott Brown. kitchenerguy@rogers.com


Carol B, January 3, 2006 - Hi Jon, Thank you for this great service to some of us who would be totally lost in the great maze and confusion of this diagnois and what lies ahead. I read in one post of yours that you have 3 different insurance providers. Is that the only way to be able to receive the right doctors? What about high risk insurance for people with this condition? What did you do to get your insurance? I guess it's quite expensive.
     My son in the Navy has been diagnosed with this disease and of course they are discharging him and possibly with no insurance. Are there any insurance companies that will want to take him on with this condition? I am so worried, I can't think straight. Can you advise? Thank you very much. Carol B. cbarber77@bellsouth.net


Jon's January 3 reply to Carol B's January 3, 2006 - Hi Carol, When I lost Social Security Disability, I also lost my Carpenter's Union disability and 2 of my 3 health insurances so for the last year I have only been covered by my wife's insurance plan. This will degrade a bit further in March when I start on her new health insurance, which puts me in an HMO with zero out of plan coverage. Although I won't qualify for the CHF specialist my current CHF doc wants me to see in St. Louis, I'll find one I can deal with, I am sure.
     You use what you have - that's why it's absolutely critical to self-educate and stay up to date on all heart failure developments. This allows you to steer your own treatment, regardless of the current provider.
     The first thing to do is follow Anita's advice (she's on the ball and has been dealing with CHF in the family for years). Find out if the armed services have any legal obligation to help your son and if so, exactly what and how, then get the process started.
     At the same time, talk to your son and go over his medical records with him. What exactly caused his CHF? Has the cause been addressed? If it occurred during his service, does the service have to pay to correct that underlying problem? What are his current symptoms? Can he work an office job? If so, does he need extra training? If so, does the service owe him that training? It's an information chain that you have to follow from link to link to know were he stands, as well as where he is likely to stand. Then, where does he want to go and how best can he get there? Don't forget that both state and federal congresspeople work for you - make them earn their money finding further options for your son. Especially at the federal Senatorial level, pressure can achieve wonders.
     Information and education are powerful tools for living with heart failure. Jump in and gather the information while you self educate on the illness. As a last resort, there are high-risk state insurance pools, but they are expensive and enrollment is limited to a certain number of eligible applicants annually. Jon.


Linda C, January 3, 2006 - Hi everyone, I want to thank everyone for their generosity during this past year in supporting CHFpatients.com, Inc. I know that God has blessed our family so much with the support from all those who come to this web site. Through financial donations, just over half the Social Security benefit that Jon lost almost a year ago was replaced with these generous donations.
     And the wonderful notes that we have received through the year have been so encouraging and such a blessing. It is good to know that this site has brought heart failure patients and loved ones all over the world together to help each other!
     Thanks again to everyone, and may your new year be filled with God's blessings. From Linda, Jon's wife (and company treasurer). linda@jonsplace.org


Frances P, January 3, 2006 - Hi all, Can anyone give me advice? I think I have HF but my doctor says definitely not. Since most of you have HF, I trust your responses. This is kind of long but I don't know where else to turn. Thanks in advance for your responses.
     I was diagnosed with cancer last year and had 4 months of chemo, the kind that can cause HF. I am through with treatment and am considered cancer free but I began to feel worse instead of better. Since August I have been getting more and more fatigued to the point that I have to adjust my life around my energy level. I wake up terribly swollen every morning in my hands, feet and legs. Lately, I have been feeling like I have something sitting on my stomach that makes it hard to breathe. I used to work out hard every day, even during chemo, but now I can barely do a brisk walk.
     I never had high blood pressure before but all of a sudden it is dangerously high. I have had episodes of SVT (supraventricular tachycardia) for 20 years but I could control them and they were infrequent. Suddenly, they are unmanageable. I had a normal echo and stress test, so my doc says I definitely do not have HF. He put me on a beta-blocker for the high blood pressure and tachycardia and I felt much better - not great, but better. He took me off them and I feel horrible again. I am afraid to ignore this, but my docs think I am a hypochondriac by insisting that I have HF. I am too young, too healthy, and didn't get enough chemo to cause it, they say. Also, they claim an echo would show everything. I am 48 years old, and I was thin and in great shape. I now have a big belly and have gained 15 lbs in 4 months. Any advice? Feel free to e-mail me. frannysue@aol.com
 
Jon's note: Have you had a BNP blood test?


Tom C, January 4, 2006 - Hello, I have given up on Coreg. It makes me feel awful and never gets better. My doc says some people just don't tolerate it and I'm one of them. tomcam333@cavtel.net


Jack D's January 4 reply to Jimmy R's December 27, 2006 - Hi Jimmy and other drivers, I also got the paper saying I needed doctor's permission to drive simply because I used a walker to go to the driver's license window. The bozo pulled out this form and I read it carefully. It said that I had experienced bouts of unconsciousness and must have a doctor's permission to get a license.
     Well, I just couldn't figure out how this government clerk had ascertained that I had experienced bouts of unconsciousness simply because I used a walker. I mean, he was a government employee because he couldn't pass the test for McDonald's. So I went to work - I called a lawyer and sent copies of the paper with my detailed explanation of this moron's actions to several people in the state government. I also explained how I was going to initiate a class action lawsuit against the DMV because its lowly drooling clerks were practicing medicine.
     I got several calls explaining that I could ignore the paper, just go back to the DMV and get my license. The clerk was to call the Director to verifiy that the restriction had been removed by him. This worked fine. I have problems walking/standing up because my abdominal muscles are pretty much defunct but sitting is no problem. Now as far as CHF goes, well I quit driving of my own accord for an entire year at the onset because I had problems, but the problems went away.
     Whether you drive or not is a matter of personal responsibility. If you feel you are having a problem, then you should forget about driving completely. I mean, who really cares if you happen to kill yourself? Not me! But when you kill someone else, there is a problem. You see it on the news a lot; some idiot who is just too proud to quit driving plows into a crowd of people, killing many and the driver walks away. Hey, why should the driver care? There's insurance, right? It's all about personal responsibility, but that is pretty much lacking in today's world. maddjak@hotmail.com


Anil M's January 4 reply to Jon's January 1, 2006 - Hi Jon, Both the procedures were done on October 31st last year. The surgeon was Nick Smedira, whom I believe is one of the best in the region, while the cardiologist was the director Patrick Whitlow, who certainly seemed stumped at this development. He proposed that I move to a heart transplant possibility! This seemed so unlike their reassurances before the surgery that I am really confused. Any ideas? anil_malhotra@hotmail.com


Jon's January 4 reply to Anil M's January 4, 2006 - Hi Anil, This is one of those situations where I have to first point out that I am not a doctor, and that it can take months after heart surgery to get full benefit. However, a quadruple CABG should have increased your EF quickly. I'm assuming you had an extremely distorted left ventricle to merit a Dor Procedure. Is your current heart size and shape pretty close to normal? If so, perhaps more time and proper meds may make an improvement. However, I'm about as stumped as your current doctors so I resort to my usual message when unsure of your options - get a second opinion! I'd do it soon. Try for someone like James Young and if you talk to another surgeon, try Patrick McCarthy if possible. Jon.


Jill M, January 4, 2006 - Hi Jon, My sympathies on your move. I've been in the same house for 35 years and heaven help those who have to clear it out one day! I'm wondering how many really old-timers like me and you who go back many years - I think I first posted in 1997 - are still in touch. Back in those early days we were a close-knit group and Coreg was the new wonder drug - and about the only effective treatment.
     I'm happy to say that I'm fine. With medical approval, I've been off Coreg and Lasix for quite awhile and have cut my digoxin dose by half. I've been told that I must stay on Ramipril and Aldactone (spironolactone) for the rest of my life.
     I'm now 66 (nearly 67) and have met a wonderful man. We'll get married once we have sorted out who will live where. He is a widower with his own house, as I have mine. We each have a dog with the same name, which complicates matters somewhat.
     You and the others were a real godsend in the early days. My cardiologist says I'm one of those who made a remarkable recovery. He admitted that when he first saw me he didn't think I'd last a year. I'd love to hear from anyone, especially those from the old days. Jill M. jillm@iafrica.com


Jon, January 5, 2006 - Hi everyone, Just a note that I'll be tearing down my computers Saturday so tomorrow (Friday) will be the last day for posts until roughly the 15th. Jon.


Jacky B's January 5 reply to Jill M's January 4, 2006 - Hi Jill, What a great post! It is so good to hear such good news. Thank you for posting. The fact that both your dogs have the same name certainly means you are the same wavelength! I wish you every happiness. Jacky. jackymwb@earthlink.net


Karen K's January 5 reply to Jill M's January 4, 2006 - Hi Jill and all who read this, I think that I may be one of the "old" ones. I was diagnosed in 1991 after going into congestive heart failure. I also received the "wonderful" prognosis that appears quite common. I will admit I was very scared and became very depressed.
     It is now 2006 and I'm still around. I really believe God has a plan for me and some day I'll know what that plan is but for now I thank Him regularly and take my blend of meds every morning. I've only been hospitalized for heart-related reasons once in the past 15 years. I am seen at the University of Iowa Heart Failure Clinic but for now it's only twice a year. I have access to a nurse 24/7.
     I very much recall when Coreg was newly approved. I had read about the medication on Jon's site and as soon as it was approved by the FDA, I downloaded as much information as I could find and took it to my doctor. I believe it's highly possible I was the first in my hometown to be put on the medication. I do remember that at each dosage increase, I had to sit for nearly two hours in the doctor's office with nurses monitoring my blood pressure every 15 minutes.
     My situaton has changed a lot over the past two years. In February, it will be two years since my divorce was finalized. I've been doing quite well on my own. I work part time at my church. There are days I think about not working any more but I would lose the people contact that I really need. Living alone takes a bit of adjustment, to say the least. My first grandchild wasn't even born when I was diagnosed and he (Christian) is now a freshman in high school. I don't know how that is possible as I'm really not old enough to have a grandchild that age. ;-)
     I'm told my condition is idiopathic since a cardiac cath and heart biopsy showed no blockages and they weren't able to detect evidence of a virus. I sometimes question this as my father died when he was in his late 50s of congestive heart failure supposedly a result of a virus.
     I think I've rambled long enough. I read all posts to this site and write occasionally. Karen K. karenk@machlink.com


Roger H's January 5 reply to Jill M's January 4, 2006 - Hi Jill, I guess I am an old timer, having been diagnosed with CHF in May 1997. I don't remember when I found this wonderful forum, but have been blessed many times over for having found it! I visit this site most every day although I seldom post unless I can add specifically. Jon, are you a Cardinal fan by chance? I am and have been since 1958 and I am now 55 years old. See ya at New Busch. God bless all. rjdhugh@mtco.com
 
Jon's note: My wife is the sports fan in this family. She's into NFL football.


Tom S' January 5 reply to Jack D's January 4, 2006 - Hey, It's good to see that " Mad Jack" is still alive and kicking hard. I too agree with the personal responsibility angle and the DMV goes completely amok putting on restraints for conditions that don't even exist and deluge the poor taxpaying slob with paperwork they can't even start to comprehend.
     I believe the average person knows when they need to quit being a danger to the motoring public. I for one have only had one bout of dizziness and that occurred because I had just started mixing ibesarten with Coreg. The two don't like each other and need a little time between pills. Otherwise I do just fine partaking in the insanity on our public highways.
     I am now once again in limbo with my driver's license because the VA failed to send some kind of chart with "spots all over it", in the words of the person at the medical review unit of the North Carolina DMV. I don't ever recall the VA doing a test which included a chart with "spots all over it."
     Until they get the chart with the spots all over it, even though the DMV has been reassured by a medical doctor that my visual accuity borders on that of a eagle, I could endure yet another suspension of my driving privileges once again. bigheart@muchomail.com


Carol B, January 5, 2006 - Hello, I just wanted to thank everyone for the helpful suggestions and encouragement. God bless you. cbarber77@bellsouth.net


Kirk S, January 5, 2006 - Dear Jon, Thank you for all of the information I've gotten from this site. I was diagnosed with CHF 19 months ago and I was scared bad. The info on how to care for myself and eating right has been a life saver. I think my wife was on more than me. I had a doctor's appointment today and I've gone from a 20% EF to a 25% EF on Coreg, quinapril, aspirin, low sodium diet, and a lot of information (we've learned how to cook and eat from your site) and a lot of knowing I'm not alone. Thank you, Kirk. ksimmons04@snet.net


Bob M, January 5, 2006 - Hello, Please help me finding a CHF specialist in New York City. I had bad luck at New York Presbyterian, where they are too busy now and the place is in chaos, so I need another. I was discharged back to my internist. Thank you. hawkdog86@aol.com


Charlotte N, January 5, 2006 - Hello, I am new to this site. I am a caregiver to my husband, who has CHF, rheumatoid arthritis, an ICD (his 6th one) and has had over 20 surgeries for his heart since 1986. He has extreme weight loss (from 265 in 1990 to 127 this week), more than 30 pounds in the last year. He has no appetite so his doctor is trying steroids to give an appetite. He just had to go in a hospital to get fluids off of his chest, which made it hard to breathe. They got over 2 liters of fluid out. I just need to talk sometimes, you know. I am scared about what lies ahead. Charlotte. bcnegley@aol.com


Curt H, January 6, 2006 - Hi all, I mostly lurk but I do have a question. I just had an ICD implanted 12/05/2005 after 3 years of HF following a heart attack which left me with low EF numbers around 25 to 28%. My question is this: I have been taking quinapril for about two years and I have always had somewhat of a cough, however for the past two months it has gotten much worse, I will say terrible. I went to an ear/nose/throat doctor today because of the cough and she could find no other reason and believes as I do that it is caused from the quinapril. She suggested I have my HF doc change this med. Is this ACE inhibitor so good that I should stay and just put up with the cough or change to that drug (can't remember the name) for people who have problems with an ACE inhibitor? Everyone take good care and God bless. Curt. chammock@houston.rr.com
 
Jon's note: I'd switch to an ARB.


Bonnie B, January 6, 2006 - Hi Everyone, I am just wondering if anyone has experience with an EF returning to normal 60% within one year of HF episode, but still having symptoms of extreme fatigue and exhaustion following normal activity (painting, cleaning house, reading, etc.). Thank you for any help or advice you can give me. bonniejbryson@earthlink.net


Susie M, January 6, 2006 - Hi, I have a few questions about my husband with CHF. I have written before. These symptoms are new or have increased in the past month: increased fatigue, having problems even picking up our chihauauh or taking the trash can out to the curb, increased shortness of breath, insomnia, loss of appetite, constipation, and his voice has weakened. His swelling is always just in his abdomen. I am also considering asking his doctor for a handicapped sticker since by the time he walks from the car now to the Walmart entrance for example, he is worn out. After reading about other experiences about handicapped stickers, I am a bit scared to ask.
     He drives to St. Louis (an hour away) to work 2 days a week, which pays all our bills and he loves his job. He has a pacer/ICD with an EF of 27% a year ago. He takes Coreg, Demadex, amiodarone, advicor (lipitor with niacin), monopril, and aspirin. We also watch the salt and fluid intake. He has been on these meds for two years with no problems.
     He had a triple bypass 2 years ago. He is spiritually and emotionally great through all this. Does anyone have any advice on any of these issues? I know it is a lot. I want to do the very best for him. I would appreciate any advice. Thank you Jon and everyone else! smiracle@showme.net


Susie M, January 6, 2006 - Hello, I am so appreciative for Jon's site. It has helped us so much. It helps me also to know what to ask the doctor. I also feel for Jon in his moving endeavour right now and I am asking every person that reads this right now to lift Jon and his wife up in prayer for strength, guidance, peace, and joy through this move. This is one of the best ways we can bless them, for Jon has surely has blessed us with his CHF site. I have moved a lot and it can be very tiring and stressful. God does answer prayer and why would God being the loving God He is, not answer each of us as we come together for Jon and his wife? From Susie, wife of my darling husband with CHF. smiracle@showme.net


Jacky B's January 6 reply to Charlotte's January 5, 2006 - Hi Charlotte, Welcome. This is a fantastic site, Jon has any info you might need and we are here for your support. Just let us know how your husband is doing and take of yourself too - caregivers are very important for CHF patients, as Jon will tell you. He has Linda so you need to take care of yourself. Jacky. jackymwb@earthlink.net


Joy V, January 6, 2006 - Hi, I'm a producer for ABCNews.com. I'm working on a story and looking for sources, advice, and help. A group of doctors and ethicists recently issued a report on an interesting fact: People who do not have health insurance generally cannot get heart transplants. However, people without health insurance make up to 25 percent of those who donate hearts, even though they wouldn't be eligible to receive a heart if they needed one.
     I'm looking for people who can talk about how much money and having private insurance plays an important role in whether someone can be listed as a recipient in need of a heart. Please e-mail me at joy.n.victory@abc.com. Thanks, Joy. joy.n.victory@abc.com


Jon, January 6, 2006 - Hi everyone, Tomorrow morning I tear down and pack our computer network so I'll be offline for at least a week, maybe 10 or so days. The site will be here but the forum won't allow posts until I have the network up and running in our new home. Oh goodie - now I've packed it all and it's almost time to unpack it all. Ouch! ;-) Jon.


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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