The paperwork never ends The Archives
Loved Ones - January, 2002 Archive Index

Karen S 1-3     questions - ventricular septal rupture after effects
Roy 1-5     question about warfarin and aspirin together
Andrea's 1-7 reply to Roy's 1-5     warfarin and aspirin together
Debbie J 1-7     intro, valve problems, diabetes & more
Jon's 1-7 reply to Karen S' 1-3     possibilities
Daphne 1-8     seek some advice about mom
Teresa 1-9     hopeful story
Richard M's 1-9 reply to Daphne's 1-8     obesity and CHF
Julie L 1-15     husband awaiting transplant & more
Andrea's 1-15 reply to Daphne's 1-8     losing weight is critical & more
Karen S' 1-15 reply to Jon's 1-7     seeing cardiologist Friday & more
Susan B's 1-16 reply to Karen S' 1-15     a CHF doc makes all the difference!
Lauri 1-18     what should we do?
Davida S' 1-21 reply to Lauri's 1-18     possibilities
Molly 1-21     what should I ask dad's doc?
Sandra R 1-24     what do we do now?
Jon 1-24     sorry
Tammy M 1-24     mom has HCM, won't get treatment - help!
Susan B's 1-24 reply to Molly's 1-21     questions to ask & more
Donna 1-24     venting about my dad
Davida S 1-24     wishing more caregivers would post
Jon's 1-24 reply to Davida S' 1-24     hidden characteristics
Brenda N 1-24     my mon's story, this phase over
Mike W's 1-25 reply to Tammy M's 1-24     maybe this will help
Peggy's 1-25 reply to Davida S' 1-24     getting and giving help
Maria's 1-26 reply to Tammy M's 1-24     helping your mom & yourself
Annie 1-26     my dad died, thank you for the info
Roy's 1-28 reply to Davida S' 1-24     I do wish more people would post here
Nora 1-28     seek others in the same boat to talk to
Lisa E 1-29     acromegaly causing cardiomyopathy info
Tammy M 1-29     thank you all so much
Donna H 1-29     our experience, any thoughts?
Jon's 1-29 reply to Donna H's 1-29     I hope other also reply
Anita Silvey 1-29     replying to posts & more
Walter K's 1-29 reply to Rick's 12-22     Flomax and diuretics
Peggy's 1-30 reply to Donna H's 1-29     Coreg dose, support & more
Sandy H 1-30     doctors disagreeing, questions, & more
Tammy M's 1-30 reply to Donna H's 1-29     CHFer's moods, doctors, children & more
Roseanne S 1-30     update on my husband & his transplant
Donna H's 1-30 reply to Jon's 1-29     update, thanks & more
Roy 1-30     questions about mom's treatment

Karen S, January 3, 2002 - Hi, One year ago my husband's heart ruptured after a heart attack. The ventricle septal rupture was repaired using a bovine pericardium patch and another patch was placed on the back of his left ventricle, which is now made up largely of the patch. I cannot find much info on this subject. I understand that most people die instantly from such a rupture; however I know there must be someone out there who can tell me something.
     For the first 7 months there was steady improvement. The next 3 months he seemed to level off. For the two months his symptoms have increased: shortness of breath, more frequent and more severe chest pain, more swelling in his face and abdomen, and headaches. I want to know if the patches - which I understand will cover with scar tissue - make his situation any different than the "average" CHF patient. He takes Coreg, prinivil, Lasix, micro-K, nitroglycerin; and for polymyalgia rheumatica, he takes prednisone.
     I know that there are ups and downs with CHF but would like input on your ideas or thoughts. Thanks, Karen.

Roy, January 5, 2002 - Hi, I want to ask a question regarding warfarin and aspirin. Mum takes 15mg warfarin a day and 75mg aspirin a day. Does she need to take both types of tablets, or are the tablets doing exactly the same job - thinning the blood? I would appreciate any information. Sincere best wishes to all on this site and the caregivers, Roy.

Andrea's January 7 reply to Roy's January 5, 2002 - Hi Roy, So long as her doctor and pharmacist are aware of her taking both, I think its safe. You definitely should speak with both of them to ensure that this isn't an oversight. Aspirin does "thin" the blood (like warfarin) but aspirin also has anti-inflammatory properties. Her doctor may want her on it for arthritis, etc. Definitely double-check with her physician to be 100% sure he is aware of her taking both.

Debbie J, January 7, 2002 - Hi, My husband has DCM, CHF and a-fib. He had a CABG in 1985 after a heart attack at age 43 (then). He is presently age 59. He decompensated in January of 2000, coded twice, and was in critical care for a week. He did "okay" till a couple months ago. His lymphocytes and granulocytes have been out of whack for at least 6 months. In November he was in the hospital again with a-fib, CHF, pnuemonia, and cellutitis in the elbow.
     His legs have severe edema to the point that he is getting blisters and fluid running down his legs from the knees down. His meds are Lasix, zaroxolyn, Aldactone (spironolactone), amiodarone (Cordarone), digoxin (Lanoxin), Isorbide, captopril, Coreg, folic acid, B-12 and B-6. Plus, I think I am forgetting something. In January of 2000 his EF was 40. It is now down to 30% with 2 bad heart valves. He had a leaky one but now another is stenotic. Like many he is on a constant quest to feel better but seems to be going downhill slowly. He sits in his bedroom for the most part. The docs told him his heart is too weak at this time to try and do valve surgery so they put him on Coreg to see if they could build him up.
     Being diabetic with his immune system screwed up is of great concern to me. We have an HMO, Kaiser. I am not so concerned about his leaky valve as the stenotic one. This seemed to happen all of a sudden and I wonder if he had some sort of infection that hit his heart valve. Debbie.

Jon's January 7 reply to Karen S' January 3, 2002 - Hi Karen, I asked a CHF doc about your husband's situation and he gave a very brief reply, since he knows no details and has not seen your husband. He said that possibilities include advancing heart failure independent of patches, a leaking patch, or something else going on. He also said that, "The gentlemen's next office visit to his cardiologist could be a very valuable visit, probably the sooner the better." Jon.

Daphne, January 8, 2002 - Hi, My mother was just diagnosed with CHF on Friday last week and I am scared for her. She is very obese - at least 350 pounds - and has been suffering from arthritis for many years. She is only 63 but I think that she is in danger of losing her life soon.
     For the last 2 months she had been dealing with irregular heartbeats and she went on meds for that. When her heart did not convert, they shocked it last Wednesday. Then on Friday she went back in because of chest pain. They drained about 10 pounds of fluid from her. Her heart rate initially very high and then it dropped too low (40s). She is finally stable but she thinks that she is going back to work the day after she gets out of the hospital. I live 2+ hours away and she has no local family or close friends so I am really worried about her ability to cope with this. I am also worried about her losing weight, if that will be a stress on her heart. I really don't want to lose my mom. Can anyone give me any words of advice? Thanks.

Teresa, January 8, 2002 - Hey everyone, Last March (2001), my 48 year old mother had a stroke and was then diagnosed with idiopathic cardiomyopathy. Upon her arrival at the ICU, she had an EF of 10% and the doctors were focused on preparing us for a heart transplant. She had wonderful doctors who put her on a battery of medications including Coreg, which I believe is a miracle drug. She also followed her low sodium diet very strictly (only had to take her diuretic once or twice the whole time) and exercised faithfully, first in a cardiac rehab program and then she continued on her own.
     She went back to the doc in June for another echo and her EF was up to 35 to 40%. She had gradually felt better and better, and went back to work in mid-July. She went back for an echo on January 9 of 2002 and her EF was 60 to 65% - the best belated Christmas present ever. Needless to say, we are all thrilled. Although she will continue on Coreg at least for the time being and will still have to monitor her sodium intake she has been removed from all other medications and is considered 99% cured.
     I wanted to share her story with you because when she became sick I immediately began researching the web and books for all the layman's info I could find on her disease and what her prognosis was. I was immediately plunged into a mass of depressing information and statistics. It really began to depress my hope and optimism for her recovery. I wanted to contribute some good news and hope to someone out there who may be going through a similar situation. Please feel free to contact me if you have questions or want to discuss this.

Richard M's January 9 reply to Daphne's January 8, 2002 - Hi, All I can say is that I am age 63 and I weighed 425 pounds with arthritis, and also have CHF and had irregular heart beats. I lost 150 pounds and worked out, and cut my salt intake and took my meds, and am now out of heart failure. I can walk again without pain and just today had my heart shocked into proper rhythm. I believe being obese compounds the illness. If you need any more information feel free to e-mail me.

Julie L, January 15, 2002 - Hello, My name is Julie and my husband Rob had a massive heart attack on October 15, 2001. I watched his heart fail to the point he was not going to live without either a heart transplant or LVAD. We got a call for a heart and waited but it was no good. We were running out of time. He barely made it through the surgery for the LVAD but he made it and was making leaps and bounds every day! We have had many many setbacks, like now he is back in the hospital for the long haul. He cannot come home until he gets transplanted. He is depressed but his heart is leaking blood and he cannot come home, being a ticking time bomb.
     I have so many phases of emotions I go through everyday but I feel I am strong and can handle it, but sometimes no one understands, ya know. He is only 33 and I am 28. It has been a long haul and I don't believe the worst is over, Julie.

Andrea's January 15 reply to Daphne's January 8, 2002 - Hi Daphne, I can only second Richard's response to you. I am also obese. I now weigh about 280 pounds and am still working to lose more. I was over 350 pounds when I was diagnosed in April of 2000 with idiopathic cardiomyopathy. Your mother is in for a battle. There is nothing easy about CHF.
     She needs to lose the weight. Losing it will not stress her body so long as she doesn't starve herself. I'm on a 1200 calorie a day diet with 2 grams or less sodium daily (that's less than a teaspoon of salt) as well as restricting my fluid intake. If there is any way possible, you should hire someone or get a friend to check in on your mother. She'll need someone to lean on and to encourage her. If she has a computer, direct her to this site. It is truly a great place for us CHFers. Let us know how she does. :-)

Karen S' January 15 reply to Jon's January 7, 2002 - Hi Jon, I can't tell you how much I appreciate you taking your time to ask your CHF doc about my husband's situation. We are seeing his cardiologist on Friday, although I am not optimistic he will tell us anything. I really believe he needs a CHF specialist. The ones closest to us are 3 or more hours away and require a referral. We are in the process of trying to get a referral. Again, my heartfelt thanks. Your web site is invaluable, Karen S.

Susan B's January 16 reply to Karen S' January 15, 2002 - Dear Karen, I am so glad that you are taking Jon's advice and going to a CHF doctor. It makes all the difference in the world. We drive about one hour from our home, passing by many other doctors' offices, to get to the CHF doctor. It is worth it! We have to make arrangments with the insurance company every time we go to the doctor - but it is worth it. The differences are major.
     You will be glad that you drove the 3 hours to get the CHF doctor. After we went the first time, it was such a relief to get a game plan to fight the CHF and to get off some of the meds with long-term side effects. My husband's CHF doc tracks quality of life issues and has dealt with those too. The first docs did not even spend 20 minutes with us in the first 6 months of this illness and that included in the hospital for 2 stays. We spent 45 minutes with the CHF doc on the first visit for a second opinion. We changed docs that day.
     If I had not found Jon's Place, I would have lost my mind because the first docs did not explain anything. The nurse blurted out, "You know that he is in heart failure, don't you?" No, we did not! Nor did we know what heart failure was. I got the on the Internet so that I could understand. My mom understood but did not want to upset me. However, she kept telling to get more information. I don't think that my husband would be doing as well as he is today if I had not found this site. I cannot say enough good things about it and about Jon and all of his hard work putting this together. One of the best things that I found on this site is the CHF doctor. Good luck, Susan.

Lauri, January 18, 2002 - Hi, My name is Lauri and my brother recently had an ICD implanted. There is a possibility that I may have the same problem he has but I do not have the financial means to even see a doctor. The onset of my brother's problem was very sudden. He went in for surgery on his shoulder and came out with an ICD. We both were adopted so we have no history of previous family members. My brother directed me to this site and I am very interested in information regarding his condition and possibly mine, and what I should do. I love my brother very much and am very worried about him. Thank you, Lauri W.

Davida S' January 21 reply to Lauri's January 18, 2002 - Hi Lauri, Check with all the local hospitals and find out if they have low cost clinics. Some charge based on your ability to pay. Our main hospital in Richmond offers such a clinic. The first appointment is usually one month or more away. Also, call your local social service department and explain your situation. They may be aware of options to help you out.

Molly, January 21, 2002 - Hi, My dad was diagnosed with CHF at the age of 52. He is 69 now, and I have to say that until I stumbled on this site while researching his disease on the Internet, I had no idea what my father's diagnosis entailed. Right now he is in the hospital with an extremely enlarged heart, with severe fluid retention in his abdomen, and his legs and feet. His blood pressure is 87/45, and they cannot give him meds until they figure out a way to raise his pressure. My mother is acting like he is spending a few days relaxing in a spa and my dad does not seem particularly concerned, but this seems quite serious to me. The nurses will not talk to me and insist I contact the doctor directly. What exactly should I ask his cardiologist when I am finally able to track him down?! I would greatly appreciate any response. Thanks.

Sandra R, January 24, 2002 - Hi, My sister was diagnosed with CHF by her PCP. She is with Kaiser and also has a cardiologist through Kaiser. I have been surfing the Net to look for information for her because what was and was not told her by her PCP scared the tar out of her. I read The Manual and copied it for her. Today she called Kaiser and was told that the cardiologist does not treat CHF patients - that her general physician does and that the PCP would give her the meds to prevent any problems. My sister is overweight and has been having related heart problems for awhile. She has a pacemaker and irregular heart beat that is controlled with meds. She was given an Rx for an ACE inhibitor. When she asked her PCP about the new pacemakers, he said that was beyond him. Help! california_red

Jon, January 24, 2002 - Hi everyone, I'm sorry for the gap in coverage, so to speak. My e-mail server died (caught on fire) and apparently I lost all the posts and messages sent to me for almost 2 days. I am still trying to get everything set back up in working order (configured) with my web host. So it goes, running a site on the cheap. <g> Jon.

Tammy M, January 24, 2002 - Hi, My mother was diagnosed with HCM (IHSS) approximately 10 years ago. The condition was discovered when she started having headaches, attacks of claustrophobia, and panic attacks. She told my dad she didn't feel right. They went to the hospital and her blood pressure was dangerously elevated. She was in the hospital for a week, while the doctor tried to reduce her blood pressure. For many months after her initial hospital visit, if my parents weren't home when I came home I would go to the hospital. These trips to the hospital happened about 2 nights a week for several months, until her blood pressure was under control. She was referred to a cardiovascular group out of Springfield, Illinois, and they discovered the IHSS.
     After about 5 years of treatment she began to have difficult breathing and was referred back to the cardiologist. He ran an echo and a catheterization to measure the pressure in her heart. The pressure in her heart was much higher than the reading on a blood pressure cuff and her heart muscle was significantly thicker. He suggested and she agreed to dual-chamber pacing. This was approximately 5 years ago. This gave her much relief but after a few years she began to see symptoms return.
     She thought that if she dieted she would feel some relief. She is about 240 to 250 lbs. She and my dad decided to do the so called "Mayo Clinic Diet." She lost 50 lbs but her condition continued to deteriorate. I personally blame it on the diet although I have no evidence. Then last year she developed pneumonia and went to the ER, barely able to breathe. Simple examination of the chest x-ray revealed that her heart had significantly increased in size. She was immediately transferred to a larger hospital. Echocardiograms revealed that the wall thickness of her heart had doubled in size in 5 years. The doctor recommended a septal reduction. However she is scared and has avoided going back to his office, which is understandable. However, it has been almost 9 months and she hasn't returned to his office. My mother has also convinced herself that she doesn't need the surgery and that the doctor "didn't really mean that."
     My mother and I are best friends. However, when I try to talk to her about seeing her doctor or about the surgery, she becomes defensive and gets extremely mad at me. She gets mad when I tell her that she shouldn't be bucking bales of hay for their two horses, cleaning the horse stalls or helping do repairs on the barn with all of the dust. I live over an hour away so I can't help on a daily basis, and I am an only child, so it is just mom and dad.
     My dad does not push my mom about what she is and is not supposed to do because he has to live with the silent treatment if he does. I really don't know what to do. I was hoping that someone who has faced a similar situation, might have some suggestions for me. I am really desperate. Her dad died at her current age (48) of this disease and he didn't present any symptoms prior to his sudden death. I am really scared. I am waking up with night terrors screaming because I have just witness her death in my dreams. I have insomnia and depression, all associated with this situation. If anyone has advice, please, please post it.

Susan B's January 24 reply to Molly's January 21, 2002 - Dear Molly, I am sorry about your father. You are at the right site to learn about CHF. Jon's site is great! If I was in your shoes, I would want to know why my dad had CHF, which is caused by many different illnesses. I would want to know if the underlying illness is being treated, then I I would want to know what steps dad needs to be taking.
     For example, does he need to do rehab or new drug treatment, or just what can he do to get better? For example, exercise is a big help to my husband so I would see if and when your dad could exercise. The American Heart Association has a list of questions to ask doctors on their web site. Those may help you too. You and yours are in my prayers. Good luck, Susan.

Donna, January 24, 2002 - Hi All, I was diagnosed with diastolic dysfunction a few months ago and posted to the other side for info. Now my 69 year old dad is in the hospital with CHF. I found out that 2 of my uncles and my grandpa had or have CHF. Dad has one kidney because one was removed 5 years ago due to cancer. He also has emphysema, CHF, and had a heart attack last week, in which he "blew out his largest main artery."
     The docs say they can't really do anything for him surgically because of all of his problems, and are trying to find meds to get rid of fluid around his heart and lungs, as well as meds to remove plaque from all over his heart. He has 30% use of his heart. Until a couple of weeks ago he smoked 3 packs of unfiltered Camel cigarettes a day and has for over 50 years; he eats very "country cooking" with lots of fat, calories, and salt; he doesn't exercise at all and his legs fall out from under him when he walks.
     The docs are doing their best but say it's really up to him. He said if he had access to a cigarette right now, he'd smoke it. :-( I wonder how long I'll have him around. I'm back at work after staying with him for 6 days, but it's hard to concentrate. Thanks for listening. I write because I know you understand.

Davida S, January 24, 2002 - Dear Caregivers, I am sure you appreciate the wealth of information that Jon's Place offers. Sometimes I read posts from the caregivers who are desperate for any advice or information we could offer them from our own life's experiences. Many of there requests for information go unanswered by other caregivers here. I am not sure why. There may be many reasons some of us don't reply, from not knowing or just not up to it because of our own challenges at the moment. The patients on the other section have way more posts and provide information to each other more than we do. I know from living with a husband who has heart failure that I have learned a whole lot about the heart and I can help others in this situation from what I have learned and provide a tiny bit of moral support, if nothing else. So what I am asking is if you read a post and you have an idea or suggestion (put yourself in the position of the poster and what you would do in a similiar position) please reply to the posts on this side. I like to contribute back and help other newcomers to the site.
     Many of our friends on both sides of Jon's Place have helped me. When my friend suggested I go to a doctor for my severe depression surrounding my husband's health, I turned here and met other wives in the same situation. My friend said I needed more than a web site. Well, there was nothing a psychiatrist could do other than drugs and standard protocol. Many times you have to have been in a similiar situation to truly understand the disbelief, fear, and grief that comes along with CHF. So let's continue to help each other. Remember how much you have gained from visiting this site.

Jon's January 24 reply to Davida S' January 24, 2002 - Hi, I appreciate your request and hope it's taken to heart by all the readers here. I used to worry about the lack of constant posts here but over time I learned a few things that greatly reduced that concern. One thing it's easy to forget is that e-mail answers flow underneath this site constantly. An "unanswered" post may have been answered 10 times via e-mail. Not everyone is a public person, inclined to share deep feelings and experiences in front of others.
     Comparing the 2 message boards here is sort of like comparing ping-pong balls to medicine balls, excuse the pun. ;-) CHFers usually have a lot more time. Many of us are out of work, while many caregivers and loved ones not only have to work at a full time job but also have to provide the very caregiving you mention: labor intensive low sodium cooking meaning more shopping, plus house cleaning, running errands, getting meds from the pharmacy, dishes and laundry, and on and on - you know what I mean. That really makes it tough for a lot of caregivers to get here each day, much less reply. Many CHFers can't help with these things, leaving them with more time on their hands.
     We CHFers also are less able to pursue hobbies and activities that require physical action so we are in front of the pooter a lot more than caregivers, who might like to go to the beach, play tennis, engage in local clubs and committees, and so on. Caregivers' situations can really differ a lot as well, depending on whether their CHFer is compliant with meds and life style changes, their age, location, type of doctor, other illnesses they have in addition to CHF, and so on. CHFers all personally experience pretty much the same symptoms and that bonds us more closely as one group, regardless of the differences. Caregivers tend to naturally subdivide into more subgroups.
     Anyway, like I said, I appreciate the post. It's well spoken. I just wanted to lend some of my hard won experience on this, since many of these things are really not self evident at all.

Brenda N, January 24, 2002 - Hi Jon and everyone, I found out that if your aortic valve isn't working properly, then meds may not help you because you have another problem causing the symptoms - something mom's previous cardiologist of 13 years didn't know. Taking advice from this site, we got a second opinion from a CHF doc. To recap my previous posts, my mom had her aortic valve replaced on November 20, 2001. I had been down visiting her since September 1 per her request and feared that her health was getting worse.
     Surgery went well although I found out later that the surgery was very high risk for her, and the doctor hadn't expected her to live through it. She had her minor troubles recovering from surgery and developed a fever that just wouldn't go away. We were making plans for her to go a rehab hospital to wean her off the ventilator and nurse her back to health and get her meds regulated. Days went on, up and down with the fever, and they wouldn't move her to rehab until they had it under control. They finally had a culture grown and took a scope down her throat to look at her aortic valve. They thought they saw some kind of growth. The fever persisted. She wasn't responding to antibiotics. All signs pointed to infection at the aortic valve.
     She just lay there day after day. She wasn't very responsive. She would squeeze your hand but she was mostly without expression. She was this way for 5 weeks. Her EEG was normal. Surgery seemed to be the only possible hope if she could make it through it. You listen to the doctors and together you try to make the best decisions, not knowing what the outcome will be, because you care for your loved one. Mom was in the hospital 6 weeks after surgery when we decided to operate again, December 26. The surgery was to go in and clean out the infection and replace the aortic flaps again.
     Can you believe it? They got inside and found no infection. What they saw was inflamation. We were excited and thought this meant it was just a long road to recovery. Actually, it had been a long road to recovery. Mom died during surgery. There at the end her blood pressure dropped. There was nothing they could do. As we wrote in her obituary: Janet E. Stovall entered the gates of heaven to be with her Lord on December 26, 2001. She was age 62.
     I am still very thankful to God that I had the opportunity to visit with my mom for 12 weeks plus the 6 weeks in the hospital. I had a desire to home-school my children this year which allowed me to travel from Illinois to Texas to be with her and dad. My husband was very understanding back in Illinois. Mom is in heaven because she trusted in Jesus as her Lord and Savior, and I know she is no longer in pain. Even so, I grieve over her death. I think of her daily and cry often. Not only was I able to spend the last 4 months of her life with her, but she lived 14 years after her triple bypass surgery. My children had the opportunity to see their grandparents more then than they had in the past 13 years. And of course, I cry for my dad. He has his work to keep him busy. I thank you for listening. Thank you Jon for this site and to you for offering insight, encouragement and prayers.

Mike W's January 25 reply to Tammy M's January 24, 2002 - Hi Tammy, It sounds like you're doing a pretty good job of communicating with your mom, except for one thing. Although it is really hard, I think you need to confront (I don't mean angrily) your mom with how her behavior is affecting you! It would help if your could get your dad (maybe together with him) to do the same. It is not a guilt trip, it's what is really happening.
     Sometimes people who are sick and scared (I have CHF) get so self-involved that they kind of forget the people around them - this is not really acceptable. Being a caregiver is stressful enough without the sick person not taking into consideration how the caregiver feels!
     Talk to your dad, or even see a therapist for a short time, to help you do this with your mom. It may or may not help your mom "fess up" but I really see it as your most likely option. Your mom may or may not "wake up" to the pain she's contributing to the family but you owe it to yourself, and to her, to try. Peace, Mike Wafkowski.

Peggy's January 25 reply to Davida S' January 24, 2002 - Hi, I am a caregiver also, to my husband, who has DCM and CHF. Although he is almost back to normal, I still love to read the posts here and on the other side! Most of the time I don't have answers but if I do I definitely post here so I can help someone.
     I remember the day this all happened to my husband, which was November of 2001. What a scary time, not knowing what was going on! All I can remember is that the Dr. said "heart failure" and "heart transplant" and possibly death! That first night I came home from the hospital and got on the computer to get all the information I needed and somehow stumbled on this site! This was the news I needed to hear and I got all the answers I needed from people, although I still felt he would die in 5 years.
     Every day being on this site (which I never miss) gave me more hope! So I just want everyone to know that I do look at this caregiver site every day and hope to help anyone that I can. I never got this information from the doctor and told him that I found a wonderful site and learned a lot from it. He said don't believe anything you read on the Internet. I printed out a lot of this information and gave him it and now he lets his patients know about it in case there is anything he missed!
     I just wish I could help more people with their problems and wish everyone could get well like my husband has. Remember, there is hope! We prayed a lot and had lots of prayer for us and it worked. God bless! Also, thank you to all who have given us answers to our problems with DCM and CHF.

Maria's January 25 reply to Tammy M's January 24, 2002 - Hi Tammy, You might try printing out some of the information Jon has on this site and giving to your mom. Maybe if she sees herself in some of the materials, it might make her realize that all this time you have only been trying to help. Also, I know from my experience with my husband that people have to come to terms with these things in their own time. The more you try to cajole and coax, the more stubborn they can become.
     Your mom may have decided that this is how she wants her life to play itself out and all your pleading with her to change and get help will not change her mind. Do the best you can and be at peace with yourself that you have done so. Sometimes we don't agree with how a loved one chooses to handle something but we have to respect that it is their life whether it makes sense to us or not.
     Mike W is right: Tell her you love her and hope that she will start to address her issues because you want her to be around for a long time, but that this situation is starting to really affect you. Then, start taking care of yourself. Best wishes.

Annie, January 26, 2002 - Hi, We have just buried our daddy. He was a textbook CHF case. He suffered very much in these last few months and we find comfort that he is at peace. This site has been an enormous resource for me and my family, and I wanted to thank Jon and anyone else involved. God bless!

Roy's January 28 reply to Davida S' January 24, 2002 - Hi Davida, I just wanted to say that I agree with your post and I also wish more caregivers would participate on this site. My mum has heart failure and sometimes I would like to send out a post just sharing my fears or the positive things that happen. I don't do this at present because it does feel like a kind of rejection if I receive no replies.
     Somewhere on this site Jon said that one of the most important things for a CHFer or their Loved Ones to do is to concentrate on living, not dying. I try to live by this but when I'm really, really tired or I see mum looking unwell, I panic. It would be great to be able to have support at times like these. Sending positive vibes to all at Jon's site, Roy.

Nora, January 28, 2002 - Hi, My mom has CHF and just had her aortic valve replaced with a mechanical one. In the begining she was sick for about 4 months and docs just thought she had a bad case of the flu. Mom decided to go to the ER where she was told she had an aortic valve problem that needed surgery right away. They gave her 3 days to get a bit stronger and then she had the surgery, which took 3 hours. She needed a few pints of blood, went to ICU for 3 days, and was transfered to a telemetry ward for 3 days, then was released.
     Mom came home with IV antibiotics for 5 weeks to make sure that the bacteria did not come back. She is also on Coumadin (warfarin) and a few other meds. She is also on a restricted diet that consists of low fat and low sodium. By the way, she is only 48 years of age. Our family is trying very hard to understand everything that is happening but it is a lot to take in all at once. I just need to talk to others in my situation who can be of some inspiration to our mom and family. If you can help, please reply. Thanks.

Lisa E, January 29, 2002 - I just wanted to share some info about my husband that might help out someone else. In January of 1999, my husband was 37 years old and was diagnosed with CHF. His EF was 16 to 17% and he was told he had idiopathic dilated cardiomyopathy.
     Fast forward 3 years: His EF stands at 40 to 45% and he is discovered to have a pituitary tumor. This particular pituitary tumor was producing growth hormone, causing a very rare condition known as acromegaly. People with acromegaly may see enlargement of the hands, feet, head and facial features. Gigantism is the result of this condition in a young person who is still growing. What we found most interesting is that this condition sometimes causes heart enlargement, actually refered to as cardiomegaly. That caused my husband's cardiomyopathy. Acromegaly is very rare, only occurring in 5 or 6 out of a million people but we wanted to share our experience in case there is someone out there suffering as well.
     His tumor was removed on 1/17/02 and we are already starting to see his facial features returning to a smaller size. Thanks and God bless. Jon's Place was a was such a great site for info in the early days of my husband's CHF.

Tammy M, January 29, 2002 - Hi, Thank you to all. My mom has an appointment with her doc scheduled in about one month and my dad will be going with her. I am also checking into counseling for myself. I don't know why, but facing my mom's IHSS has been more difficult than facing my own struggles with COPD.
     I am really thankful that so many people took the time to reply to me, both on and off the messag e board. It is amazing how a sympathetic word from someone in a similar situation can be so uplifting. I think I have overcome one hurdle in that I definitely don't feel alone anymore. Thanks so much. I will keep you in my prayers and I will try to pass on my experiences as all of you have so kindly done for me. Again, thank you so much.

Donna H, January 29, 2002 - Hi, My husband had his first episode of CHF in September of 2000 at the age of 50. We thought it would be something that would be treated and our life would return to normal but so far that hasn't happened. When he was released after an 8-day hospital stay, the doctor told him he could go back to work but he would be on oxygen. Since he was in law enforcement, that was not feasible and he has not been able to work since. He was also tested for sleep apnea at that time and now sleeps with a CPAP machine every night.
          In September of 2001, a cardiologist diagnosed him as having cardiac Syndrome X instead of CHF. This upset my husband a great deal because the doctor made it sound like he was just imagining his heart problems. Because of this, he didn't go back to the doctor when he started feeling worse in November. By Christmas, he was on oxygen daily because he could not breathe. When I took him to the emergency room at the end of December, the doctor on call said that he was in CHF with constant a-fib, prescribed Lasix and sent him home.
     A week later he was no better, so I took him to the emergency room of a different hospital (we were visiting family in a different city). They kept him for 4 days and changed his medication. When the doctor came in to tell him the results of the tests, he just said that he might as well go home because his heart was worn out and there was nothing they could do except treat him with medications.
     When we went to his regular cardiology appointment, we again had a different cardiologist. This one was very concerned about the a-fib and wants to do a heart cath in February to see why he is constantly in a-fib. This doctor also adjusted his medications, reducing his digoxin (Lanoxin), but keeping him on the same dosages of his other meds. Currently he is taking Coreg, Lasix, digoxin, potassium, Coumadin (warfarin), Lisinopril, and Aldactone (spironolactone). The doctors also would like him to take an antidepressant and a cholesterol-lowering drug but he refuses because he feels he is taking enough medication already.
     He feels bad all the time: tired, confused and angry. Does anyone else see this in their loved ones? We still have a child at home and I am working full-time plus. He tries to help me but he feels terrible. The Coreg makes him very sleepy and the doctors started him out on 50mg per day three weeks ago. We were told that he should have started with a small dose and worked up to 50mg but now that he has been on it for this long, the doctor said to just keep taking it. Will his tiredness and irritablity decrease as he gets used to the Coreg?
     This is a great site and I wish I had more time to read over it. I did print out The Manual for my husband since he feels the doctors don't ever give us enough information, and we don't know what to ask. herdrich@grm.nets

Jon's January 29 reply to Donna H's January 29, 2002 - Hi Donna, Let me say that I am only going to address one issue and I hope others respond to the rest of your message. About my response, I am not a doctor! My opinion is only what I would do if it were me. I am not suggesting that you follow this as advice, I am merely stating an opinion. If it were me, I would do 2 things immediately:

  1. If still seeing the doctor who started a CHFer on 50mg Coreg, I would fire him right now, before even reading the rest of this message. In my non-lawyer, non-doctor opinion, that is pure malpractice
  2. Reduce that Coreg dose by 50%. Try to get a decent doctor to okay it first but get that dose down. Later, it can go back up (slowly) if necessary.

Sorry to be so disclaimerish but giving an opinion that runs completely counter to a doctor's advice is touchy, even though I do it more than I'd like. <g> Jon.

Anita Silvey, January 29, 2002 - Hello, I have been reading the posts about why more caregivers don't reply and try to help more. I appreciate what Jon wrote about some of us being busy but I guess that is no excuse in some cases. I know when I post, I certainly want someone to answer.
     I have had a lot of family sickness in the past few years. My brother died in December of 2000 and then my father has have several heart attacks due to the loss of his son. Sometimes life is so full of our own troubles that we don't seem to be capable of doing anything for anyone else.
     Maybe another reason some of us don't reply is because we have become used to our situation and have learned how to cope, and have forgotten how it feels to just find out that our loved one has this disease. I am not sure how to word this to get across that we still care how the new caregivers feel but we just don't know how to answer sometimes.
     Feel free to e-mail me at any time or just post, and I will try to answer. I will leave the medical questions to the CHF experts but I will try to help with the emotional questions. Phil has had CHF since 1994 and life is still an emotional roller coaster sometimes, depending on how he feels. Write me anytime. Take care of yourselves, Anita.

Walter K's January 29 reply to Rick's December 22, 2001 - Hi Rick, I'm sorry I did not reply sooner but I haven't been as diligent about reading all the posts as I should be. Anyway, I am also on Flomax; it is supposed to help with urinary dificulties if one has a non-malignant slightly enlarged prostate, but I am pretty sure it is not a diuretic in the usual sense. If your father needs a conventional diuretic, it probably should be Lasix or something like that. I am not a medical doctor so don't take this as definitive advice. I am on regular diuretics as well as on Flomax. Walter K from Pennsylvania.

Peggy's January 30 reply to Donna H's January 29, 2002 - Hi Donna, My husband was also in a-fib and they did what's called a cardioversion on him to shock his heart rhythm back to normal (sinus rhythm). Have they done that or talked to you about it? The doctor also explained that my husband would be very tired and probably not able to do a lot until his heart rhythm was back to normal.
     Your husband should no way be on 50mg of Coreg right away! Did you read the section about Coreg? If not, read it right away! Our doctor said you have to start at a very low dose and work your way up slowly. My husband started at 3.125mg and worked his way up to 25mg twice a day. A lot of people can't make it to 50mg BID. Also, it goes by weight on how much they prescribe. It sounds like you need to get a better doctor. No wonder your husband is wiped out! My husband does great on Coreg but he had a very positive attitude after he became sick. Have your husband get on this site and read the posts. He might feel he is not alone with his health problems.
     I wish you luck. There is no other place where you will get support through all of this except for here. Thanks to Jon for all of this. When my husband got sick I found this site and this is the place where I got all my information from and support. You finally realize that you are not the only one with problems. God bless!

Sandy H, January 30, 2002 - Hi, After 3 months of waiting, Bill has finally seen all the specialists. The ENT doc said he had mild sinus problems and that if he got a sinus infection, the doc would just authorize a longer dose of antibiotics so that his problem of reoccurence would be less. The doctor for sleep apnea said he would not recommend the test because the last test showed only a mild form and with the questions he asked Bill and the answers provided, indicated that a CPAP machine was not necessary at this point.
     Bill saw the cardiologist today and he said that Bill should have a heart cath. With the information from Bill's file and the information Bill gave him through his questions and answers, he said without the heart cath Bill would remain on his medications and would steadily get worse. What made me mad (and Bill said there was nothing to get upset over) is that the cardiologist who saw him 3 years ago and did the stress test said there was no indication of any problems. The cardiologist today said the stress test could be read two ways and he thinks Bill has blockages in his heart.
     Obviously, if that is the case it can be corrected, and hopefully the damage that has occurred over this 3-year period will start correcting itself. Dumb us should have gotten a second opinion a long time ago. I just don't see how two doctors can read a test result in two different ways. Has anyone else run into this? Also, the cardiologist said Bill had a very enlarged heart. If there are blockages and they are corrected, how long does it usually take for the heart to repair itself? He put Bill on 0.25mg Lanoxin daily to help with his breathing problems.
     I read this site every other day. I am one of the people who don't respond to other people's posts, not because I am insensitive but because I don't know much about CHF and the diseases that lead to it. I usually read to keep myself informed because I am still trying to figure out how to cope with my own situation without feeling sorry for Bill and me.

Tammy M's January 30 reply to Donna H's January 29, 2002 - Hi, You said he feels bad all the time and is tired, confused and angry. Does anyone else see this in their loved ones?
     I am new to the list and I wish I had more answers but I don't. I can say that I have seen my mother go through numerous stages in the progression of her HCM. She is young too, only 49. She seems to go through fear, anger, depression and then she usually becomes as comfortable as she can with the pursuit of treatment. This time however, she has been stuck in a cycle of denial which is fueled by her doctor's unresponsiveness and by the lack of information. A good doctor, from my experience, is an equally good doctor and teacher. A good doctor can make the difference between fear and comfort.
     Anger and frustration are very understandable. Your husband's mind is still good, his body is just not behaving the way he wants it to behave. Further tiredness is not only a symptom of the CHF, but also of depression. My suggestion would be to get a new doctor. Interview the doctor first so you can begin to understand their educational background, bed side manner and treatment philosophies. Further, talk to people in waiting rooms and at doctor's offices to find out their experiences there.
     I know nothing about Coreg but it can't hurt to get a second opinion from a specialist outside the current cardiology group - one you have interviewed and are comfortable with.
     I also have a small child. I don't have CHF but I do have COPD, a respiratory disorder. It can be really difficult to explain health problems to him. I explained to him that I was born with this owie on the inside and that sometimes I feel good and sometimes I feel as yuckie as he did when he got the flu and the food came "out his mouth." I try to make sure that no matter how bad I feel he is always able to cuddle with me, even if that just means laying his head on my lap or making up a bed time story to tell me when I am feeling bad. The hardest thing has been to tell him that I couldn't promise that he won't have the same owies. I hope this helps.

Roseanne S, January 30, 2002 - Hi All, This is an update on my husband. He received his heart on November 15, 2001. He was home on the 20th and walking on the treadmill on the 22nd of November. What a Thanksgiving blessing! He will be returning to work February 18th - one year after a massive cornary, followed by CHF, an LVAD and heart transplant. I am concerned about him returning to work in a gravel pit but the transplant doctor signed the release. His union contract allows him to be off one year. Prayers and blessings to all of you, Roseanne.

Donna H's January 30 reply to Jon's January 29, 2002 - Hi Jon, After reading your post and talking to our family doctor, we have cut his Coreg dosage in half. As far as the cardiologist that prescribed the Coreg, we lodged a complaint with the hospital. It wasn't just because of the over dosage of of Coreg but also his opening statement to my husband, which was, "Sometimes hearts just wear out and there is nothing we can do, just like sometimes a car breaks down and can't be fixed." Thanks for encouraging us to do what we thought we should do.

Roy, January 30, 2002 - Hi, Something's going on with my mum that the doctors aren't taking too much notice of, but is concerning me. I hope that you may be able to provide some help. Mum has severe CHF and is taking all the regular meds, including furosemide, spironolactone, warfarin, aspirin, bisoprolol and candesartan cilexetil. She has started to get pain in the lower part of her leg. The doctor has said that a small amount of fluid has started to build up, but there's nothing to worry about. She suggested keeping the leg raised when resting and taking an extra furosemide every other day.
     Does this sound okay? Is there anything we can do about the pain? Has anyone else experienced this? Should I be doing more? I would be really, really grateful for any information, advice, or feedback. Thanks for listening. Best wishes, Roy.

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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