The paperwork never ends The Archives
Loved Ones - March, 2004 Archive Index

Dina R 3-1     seek CRT pacer or ablation experiences
Karyn 3-2     are all these feelings normal, please?
Renee 3-4     coping, husbands, prayer request
Jeanette B 3-4     stressed out, please help
Carol's 3-5 reply to Karyn's 3-2     I know just how you feel
Kelly 3-5     web site for CHFers and loved ones in UK
Susan B's 3-6 reply to Jeanette B's 3-4     coping with heart failure
Mike W's 3-6 reply to Jeanette B's 3-4     doctors and statistics
Roy's 3-6 reply to Kelly's 3-5     online resource for UK
Ben B's 3-6 reply to Jeanette's 3-4     ignore stats & stick with the program
Renee's 3-8 reply to Jeanette's 3-4     our experience
Sandy 3-9     coping with a CHF spouse
Elaine 3-9     seek New Jersey CHF doc & more
Susan B's 3-11 reply to Sandy's 3-9     possible sinus remedies
Dotty 3-11     seek heart transplant experiences
Robyne 3-23     seek others' experiences with recovery
Lorraine's 3-24 reply to Robyne's 3-23     ignore the 5-year statistic
Robyne's 3-24 reply to Lorraine's 3-24     breathing problems questions & more
Annie G's 3-26 reply to Robyne's 3-24     breathing problems and anxiety
Carol's 3-27 reply to Robyne's 3-24     CHF clinic possibility
Hope M's 3-27 reply to Robyne's 3-23     develop treatment plan that works
Sheri's 3-29 reply to Jeanette B's 3-4     caution & educaton pay

Dina R, March 1, 2004 - Hello, I have not posted in a long time. I read all the posts on both sites tonight. My husband is now 35 and was diagnosed with IDCM and CHF December of 1998. He got a pacemaker/ICD in April of 1999. He takes Coreg 50mg, Lasix 80mg, Avapro 150mg, Lanoxin 0.125mg, spironolactone 25mg, Coumadin 10mg, Valium as needed, and Ambien as needed. He did take amiodarone 800mg daily for 3 years. He had AV node ablation September of 2002 and now his heart is set to beat at 70.
     This Monday he goes in to have a third wire placed to hopefully make him feel more energetic. He is on SSD and hates not being able to work and being at home. If anyone is home and bored, and would like to e-mail him, feel free. It may give him something to do while I am at work all day.
     I have never read anyone else here having a third wire placed into the pacemaker or of anyone having an AV nodal ablation. We'd be interested in hearing any of your experiences with this.

Karyn, March 2, 2004 - Hi, My husband is 39 and was diagnosed 9 months ago. He is also diabetic and since being diagnosed with CHF has suffered a stroke, bleeds in his eyes resulting in visual impairment due to medication he is taking, his kidneys are also deteriorating and he has had to give up work. He had an ICD implanted last October and is starting/trying to adjust.
     We lost the right to adopt a baby we were adopting because Social Services say he doesn't fit the health criteria, we nearly lost our home because he was self-employed and he regularly gets tired. I worry about him. He often goes for a nap in the afternoon. Is this okay or should he be forcing himself to carry on as "normal?"
     We live in the UK and can't find any decent well informed websites such as this. Any advice will be greatly appreciated. I worry about him all the time. I wake up in the night just to check he is still breathing. I work full-time and try my best to care for him. My father has given up his home to come and live with us and look after Garry while I'm at work.
     I sometimes feel I can't cope and want to run away, but I can't. I love Garry so much, but our relationship has changed. Is this normal? I am really scared for the future and sometimes can feel myself getting depressed. It is hard to stay optimistic. Are all these things I'm feeling normal? Does anybody else share similar feelings?

Renee, March 4, 2004 - Hi, My husband was diagnosed with DCM and CHF in January, 2004. I am learning all I can to help us get through this. His EF is 18%. His doctor says that he can improve so that's what we're working toward.
     I understand what Barbara and Susan say about their husbands. Mine, Frankie, also leaves all the details to me. He has a positive attitude (he says that he will get better) and he follows his diet. However, it's up to me to fix the menus, learn the recipes, refill the meds, and talk to the nurses that call. He's 38 and it took him a few weeks to face that this could happen to someone his age. They don't know why this happened. I think that's the hardest to take. He was self-employed in construction and had to quit. We have 2 teenagers and now no income - that is also a major concern for us. Thank God that we have great family and friends to help see us through! Please keep us in your prayers as I will pray for you.

Jeanette B, March 4, 2004 - Hi, My sister (40 years old) had a heart attack in November of 2003. She has been diagnosed with CHF. She left the hospital with an EF of 15% and an echo last week showed an EF of 25 to 30%. The rest of the report might as well be written in Greek. I'm not a dumb person but I can't begin to decipher these test results. She is seeing a PCP. We live in rural Maine and have no CHF specialists here. Our family is trying to figure out what this means for my sister's future since she has 3 minor kids and very important, she's our sister and we're finding it hard to believe she may not live much longer. The cardiologist that treated her in November told her that her life expectancy was 6 months to 5 years. We are all very stressed out. Please help. Jen B.

Carol's March 5 reply to Karyn's March 2, 2004 - Hi Karyn, Please read my post from February 25. I don't know if the feelings are normal or not, but I can tell you I am feeling exactly the same. When I am at work, sometimes I don't want to go home because at work I can forget for awhile about John's CHF. I think about running away. My husband is older than yours, he is 68. I imagine it is harder to accept such a devastating situation at age 39. I love my husband too, but there is a big gulf developing between us as his health deteriorates. It is harder to get away from the patient and just be with the man. Any time John is asleep and I am not, I am checking for sounds of breathing. So, no, you are not alone. Carol.

Kelly, March 5, 2004 - Hi Jon, What a great place you have here! I'm in the UK and my husband has dilated cardiomyopathy. We are in the process of building a site that will support DCM sufferers and partners, family and friends. When my husband was diagnosed I couldn't find anywhere to give me support or information, hence the new web site: There is nothing in the UK for support with this illness. Keep doing what you are doing - I am sure it's a great comfort to so many people! Keep smiling, Kelly.

Susan B's March 6 reply to Jeanette B's March 4, 2004 - Hello Jeanette, Welcome to a whole new world. My husband has DCM. At age 45, he was diagnosed with CHF and his EF was 15 to 20%. Now at age 48, his EF is 50 to 60% and has been for the last year. So I understand the shock of the low EF.
     This first thing you need to do is turn to The Manual! Education is required to deal with the doctors. Does your sister understand her doctor? She may be too overwhelmed to hear what the doctors have to say. Someone, if not her then someone she trusts, needs to sit down with the doctor and get a handle on where she is and what can be done. However, I would start reading The Manual so you can begin to understand what the doctor will be saying.
     Now a big deep breath! The world has changed forever with CHF. This is not to say that your sister will or will not get better. If you cannot get a CHF specialist, then get a cardiologist that you can work with to start. I strongly believe that it is worth it to travel to see a CHF specialist but if you cannot get one your sister must have a cardiologist that she can understand and work with. Then her education on CHF will be even more important.
     With my husband's former doctor, who was a good doctor, I would bring in to the appointments questions from what I learned here. I started out by saying that I know not everything in print is true. However, I want to ask if (for example, cardiac rehab) would help my husband. I also said that I know everyone is different - how would this or that information apply to my husband. I don't believe that my husband would have had cardiac rehab if I had not asked about it.
     I would also get a second doctor to get another point of view. It is not an insult to see a second doctor. Doctors are not perfect and they make mistakes.
     If your sister is up to it, I would have her read all she can and learn what questions to ask. If she is not up to it or if she is like my husband and wants someone else to do that part, I would find someone in the family or a close friend who would do it. Maybe that person should be you. It is hard work to be the caregiver of anyone. However, it can be very rewarding. My husband is doing much better. It is a daily fight and I am here part of most days reading, learning, venting, and I hope sometimes helping people.
     Jon has most tables of test results here so that people and understand them. If you know the name of the test then you will likely find it. If you don't, then ask and hopefully someone can point you in the right direction. You have come to the right place to learn. I read for days just to start to understand all of this. It takes time because it is a lot to take in and Jon has so much information. I learn something new every day here.
     If your sister is in such bad shape, are they talking about a heart transplant? I would look for more information. You and your family are in my prayers. Good luck. Susan B.

Mike W's March 6 reply to Jeanette B's March 4, 2004 - Hi Jeanette, Take heart. First, for a PCP with no CHF or even cardiology expertise to be handing out such a prognosis is almost criminal, and it's certainly irresponsible.
     You may not have any CHF specialists around but there is certainly a competent cardiologist within reachable distance. I obviously don't know how sick your sister is but I strongly suspect it's not as grim as you're being told by this PCP! Many of us got the same statistic about CHF but that was usually at least 5 years ago when info about CHF and treatment was still somewhat scarce, especially from general practitioner docs. Get your sister to a cardio doc who know what he's doing - now!
     I was diagnosed with CHF 6-1/2 years ago and I'm more than hanging in there. You will hear from others with the same story, some who were also given the 5-year "death sentence." Peace, Mike Wafkowski.
Jon's note: Mark Twain said, "There are 3 kinds of lies: Lies, damned lies, and statistics."  ;-)

Roy's March 6 reply to Kelly's March 5, 2004 - Hi Kelly, Are you aware of The Cardiomyopathy Association. They are based in England and provide support groups and information for people with heart failure. Search for them on Wishing everyone on this site peace and happiness.

Ben B's March 6 reply to Jeanette's March 4, 2004 - Hi, I was diagnosed with CHF and DCM in 1997 with an EF of 10% and a heart size approaching 7cm. I was told I had to go on disability immediately and would likely never work again.
     My doctor was wise enough not to give me any stupid mortality prognosis, but after reading about my 5-year death sentence almost everywhere on the Internet I fell into a funk that I am certain hurt my physical health and cost me about six months of enjoyable life as I walked around in a daze thinking I would go at any minute. My then fiance couldn't take the whole situation (mainly my attitude) and gave me the boot. I used to get furious about this stupid statistic but now, after just celebrating my one year back in the full-time work force, I am a little too grateful about everything else to get too mad. Maybe I'm just tired after working a year as a man who has technically been dead for 2 years according to all medical statistics. <lol>
     I had an echo 3 weeks ago and my heart is back down to normal size. My EF, though a little low at 50%, is almost normal. I know not everyone has had my good luck but I also know that an awful lot of people have. I'm not sure what the statistics are, but I know they are better than this stupid five year thing, and getting better all the time.
     The main thing is, although you cannot guarantee your recovery or improvement by anything you do, you can surely improve your odds by following orders - taking meds, getting a good doc you visit regularly, cutting sodium, quitting smoking or drinking, losing weight, forcing yourself to exercise, watching fluids if you have to, etc. Although this will not guarantee anything, I feel falling short in one or more areas will really hurt your chances, or your sister's in this case.

Renee's March 8 reply to Jeanette's March 4, 2004 - Hi Jeanette, When my husband was diagnosed 7 weeks ago we were told the "6 months to 5 years" as well. I fell apart and cried for 2 weeks. Then I started reading everything I could find and talking to people. The more I read, the more confidence I got that he could still have a meaningful life and that we could have years together. No one but God knows for sure how long any of us will live.
     Definitely get your sister a very good doc, one that will answer any question. After our specialist gave us the doom and gloom, he started talking about how to get the heart stronger. For some reason I believe that doctors think they have to tell you the very worst first. I've read of patients that are living 9 years with CHF. That and this site have given me the hope and knowledge to help him fight harder.
     Your sister will definitely need someone to help her stick with the program - it's not easy on any of us. CHF has affected our whole family, between monitering blood pressure and weight, and learning how to cook low sodium foods. My kids say that I forgot how to cook while daddy was in the hospital - they've hidden salt shakers in their rooms and real potato chips! Just hang in there! Tell your sister to start learning all she can. There is power in knowledge! May God be with you and your family.

Sandy, March 9, 2004 - Hi, Well, I have some questions and some revelations. The questions first: What can CHFers take for sinus, and what can they take for a nasty cough? Hubby had a very bad sinus cold in January. The CHF nurses told him to only take plain Robitussin and plain Tylenol. Currently, he has a very nasty cough. It's basically just a tickle, but it tickles him all night long and for half the day. Still they tell him, to only take plain Robitussin and plain Tylenol!
     He is not retaining fluid. This is not heart-related as far as I can tell, just a regular winter cold/flu thing. Today, with the nasty cough they said they did not want to order him anything because it would cause heart rate and blood pressure to go up, but what does the continual coughing from his toes do? It must cause a rise in blood pressure and pulse!
     Okay, the revelations: We are coming up upon the 2 year anniversary of hubby's CABG. I was a basket case. Feel free to read back on the posts. I guess what I have learned so far in this journey is that if he kept his head in the sand about major things before, don't expect any different now! If you were always responsible for appointments and meals, you still are. If anyone can be blamed for weight gain, blood sugars, etc,..., it will be you. About that 5-year survival thingie, it was one of the first things I found when searching the Net. It's a lie!
     It's not easy being the spouse of a heart patient. None of us ever bargained on this but we follow our hearts and do what we can and let the rest go. At some point we have to acknowledge that we can lead the horse to water, but we can't make them drink.
     I strongly recommend the book "Heartmates" by Rhoda Levin, a very well written book with lots of feeling and understanding. Please, anyone, feel free to e-mail me and please put "Jon's Site" in the subject line or I'll just delete it! I received so much support from people here 2 years ago, I'd love to give some back. :-) Sandy.

Elaine, March 9, 2004 - Hello, Would anyone recommend a CHF specialist in the northern New Jersey vicinity that you are very pleased with? Please e-mail me if you have a recommendation.
     My father was hospitalized 3 weeks ago. He arrived at the ER with shortness of breath and in a very weakened condition (kidneys, liver, heart, all poorly functioning) thinking he had a cold or virus. Fortunately he has just arrived home (he is very happy about this) with a CRT device, lots of meds, trying to gain the 20 to 30lbs back he lost, and he makes the effort to exercise. He is a fantastic fighter.
     Thank you in advance and thank you so much for this site, it has been extremely helpful to understand all that is involved in his care.

Susan B's March 11 reply to Sandy's March 9, 2004 - Hello Sandy, My husband also has major sinus problems. He has DCM. My husband also gets a nasty cough from the drainage. His PCP gave him Flonase, Astelin and Clarinex to stop the sinus headaches and drainage. He also uses saline nasal spray. Of couse, I don't know if these meds will mix with your husband's meds, but it would be worth it to ask. I get sinus headaches this time of year from it being too dry and the saline works wonders for that type of headache. We don't know if my husband has allergies or not but his sinus headaches are seasonal. So I hope this helps.

Dotty, March 11, 2004 - Hello, My name is Dotty. My husband has had CHFsince before we were married. My sister has terminal cancer. I have a back disability and I always thought it would be nice to be with someone who has a disability. When we first met, his heart was stable. Then 1-1/2 years later it started to give him trouble. Now he is off work and staying at home. They have already warned him about a heart transplant and I'm wondering if he should be on the list. I want it to be his decision and the doctors, and I'd like to have a part in it.
     Can anyone tell me how long they usually are on a heart transplant list? The success rate of it? What percentage gets turned down? Is heart transplant painful? What they go through? I'm madly in love with this man and I want to share part of his pain. We have been through very much since we've known each and I'm not about to give up now.
     It's so hard when I hear him apologizing for putting me through this. He's always been there for me. I don't know, it's difficult for me at times. Does anybody have any words of advice and stories that you've experienced for me to relay to my husband. He is very stubborn and I think he's in denial. He goes to the doctor next week but I think he should go now. He might even have a lead loose on his difibrillator/pacemaker. Sometimes I feel like all of this is a bad dream. I'd appreciate any tips.

Robyne, March 23, 2004 - Hi, I just found this CHF Caregivers support forum. I live in Victoria, British Columbia, Canada and I am just desparate to speak to someone who has gone through this before. Three weeks ago I rushed my husband to the emergency room because his feet and ankles were swollen up. I thought it was a blood clot since he had just returned from a fishing trip and had been sitting down for a long time.
     Anyway, to make a long horrible story short they told us that he was in heart failure. I nearly went into it myself at that point. My husband is 32 years old, 6'5", 250 lbs, fit and strong. Seven days later they released him with a diagnosis of viral cardiomyopathy. The only real information I have found so far is on the Internet and most of it is pretty bleak.
     He is at home "recovering" now on a variety of meds, including 2 diuretics, an ACE inhibitor and a beta-blocker, as well as aspirin. We get to see his PCP for his first checkup tomorrow, and believe me, I have some questions for him, but I know in my heart that he will not be able to give me the direct answers I want to hear. We have a follow-up with his cardiologist in 2 weeks. The only outpatient instructions they gave us were to cut back on salt, don't have sex, and take it easy (do as much as you feel you can).
     His EF was 22%, his baseline blood pressure is 100/80, but drops to 90/65 after his meds. His heart rate is very quick at around 100 bpm. My own doctor said, "When in doubt, look at the patient." All I see is that he is so tired. He wakes up feeling good and then the meds kick him in the butt. He can walk around, up and down stairs, comes to the store with me, etc,..., but he really tires so easily. Am I expecting too much for 3 weeks?
     Anyone out there with a similar story, please tell me a little about your husband's/friend's recovery process - how long does it take to regain any energy? I know this is a long process, but I just need some hope to cling to. Sometimes all I can think about is the stats that say that most cardiomyopathy patients die within 5 years.
     Blessings to all of you.
Jon's note: That stat is incorrect. See Let it load.

Lorraine's March 24 reply to Robyne's March 23, 2004 - Hi Robyne, Don't pay attention to the 5 year stat about CHF. My husband lived 16 years after he was diagnosed and he was 61 years old at the time, more than 100 lbs overweight, had other health problems and did not always follow doctor's orders. Most of those years we were able to travel and do things we wanted to do. We even made it to Victoria, British Columbia, and it is beautiful. You can learn so much at this site and get lots of support. Just know you are not alone and don't give up. May God bless you both. Lorraine.

Robyne's March 24 reply to Lorraine's March 24, 2004 - Thanks Lorraine, We are still in the shock stage of this and are very much needing to hear from others. We went to his PCP today for his first visit since the hospital, almost one month now. He seemed to be somewhat surprised that Paul is sooo tired! Then when Paul mentioned breathing problems, like realizing he is holding his breath sometimes and rapid breathing at night time along with apnea, the doctor suggested this could be anxiety related.
     Thank goodness we see the cardiologist who treated Paul in 2 weeks because his PCP seemed a little out of his comfort zone. The medical system in Canada is quite different than in the United States from what I gather. Our care is "free" but we don't have all the options that some of you seem to have in regards to hiring the doctors and tests that you want.
     Has anyone out there seen their loved one experience breathing problems that weren't CHF related? He is able to take deep breaths, but seems to "forget" to do so. It is also quite rapid. I know that I am having anxiety problems from this - good thing for Xanax.

Annie G's March 26 reply to Robyne's March 24, 2004 - Hi Robyne, My husband was also assumed to be anxious, due to his breathing pattern. What they eventually found out was that his oxygen level was dropping very low and every time he started to fall asleep, the low oxygen level would wake him. He didn't sleep worth anything for 6 weeks after diagnosis until they got his CHF under control. Even during that time it was assumed that it wasn't the CHF because they couldn't hear rales - a lung sound that is often, but not exclusively related to fluid in the lungs and a sign of worsening failure. If you are worried about him, take him to your University hospital emergency department. See if you can get a CHF doctor there.

Carol's March 27 reply to Robyne's March 24, 2004 - Hi, I found a web site for Canadian CHF Clinics Network. At the site, there is a list of CHF centers in Canada. I am not sure how close any of these are to Victoria. I have recently found that relying on a PCP and a cardiologist not specializing in CHF has meant that my husband, 7 years since diagnosis, is only now having the test to measure his EF.
     Because Jon's web site exists I found out about the tests, and found that Ottawa has a CHF Clinic. I was able to get our PCP to refer my husband. Maybe the Surrey Clinic is close enough to help you out, Robyne. Ask for a referral. See

Hope M's March 27 reply to Robyne's March 23, 2004 - Hello Robyne, In 1994 at the age of 42, I had the mitral valve in my heart replaced with an artificial valve because I had severe regurgitation. Actually, that valve had been leaking since I was a child but I didn't have significant symptoms until early in 1994. By then my heart had sustained some damage from the stress related to the regurgitation and my surgery wasn't as successful as it might have been had it been done 4 to 5 years earlier.
     Anyway, my EF went down to 38%, then to 30%, and one time it was 14% and another time 26%. For the last few years it has been around 30%.
     My doctors have been good about trying me on different diuretics, beta-blockers, ACE inhibitors and drugs related to ACE inhibitors. Some made me extremely tired, some made me feel sick like I had the flu or a low-grade fever, some made me unable to sleep well, some made my kidneys hurt when I went to the bathroom, some made me cough incessantly. Through many trials we have come up with a set of meds that seem to make me feel pretty normal, although I am never quite sure if the fatigue I do have is due more to the CHF or to the meds. My cardiologist is surprised that the low dose I take of the beta-blocker has the good effect that it does, because most people take a much higher dose - but that's me.
     Encourage your husband to work with his cardiologist to find the right combination of meds and the right dosages, that make him feel like his day is enjoyable. Try not to worry about how long he will live with CHF. CHF is caused by so many different things and people live for years and years and years, waaaaay more than 5. I have 6 children and 7 grandchildren, work part-time as a legal secretary, and have been living successfully with CHF for 10 years. All the best, Hope.

Sheri's March 29 reply to Jeanette B's March 4, 2004 - Hello Jeanette, I would like to applaud Susan B and Mike W for their great responses and advice! A cardiologist or CHF specialist is very critical, as well as a second opinion. Also, your sister must educate herself and research what the doctors tell her: medicines prescribed, etc. Please be sure to look up all prescribed meds before trusting a doctor's prescription.
     I'm sure my mother-in-law's cardiologist meant well when he prescribed amiodarone for her atrial fibrillation after she was diagnosed with CHF in May of 2003. However, he failed to warn her of the risk of fatal lung damage. After 3 months he took her off the amiodarone and still he failed to mention that the x-rays showed the beginnings of lung scarring and cloudiness. Five months later when shortness of breath began and she couldn't walk 10 feet without losing her breath, along with the pressure on her chest, the same cardiologist ordered more x-rays and a CT scan. He has yet (3 weeks later) to notify her of the results.
     We learned of critical damage to the lungs that progressed in those 5 months (because the Amiodarone remains in the tissue for an undetermined amount of time) when she went to see a pulmonary specialist. He wanted all x-rays and scans to accompany her to the appointment. The pulmonary doctor put her on oxygen that night. Her lungs are critically damaged. We think her cardiologist is too cowardly to tell her.
     If we had searched amiodarone (Cordarone) on the web in May, my wonderful mother-in-law never would have taken one dose of it. Every site I found - in March of 2004, 10 months too late - warned about the fatal lung risk. We trust a caring God who is more than able to reverse the irreversible, who is faithful when we are not. So now we pray all the more.

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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