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

Davida S' 6-3 reply to Sandy's 5-30     sounds like good progress
Davida S' 6-3 reply to Millie's 5-29     hang in there & keep us updated
Davida S' 6-3 reply to Kathryn's 5-24     diuretic dose, fluids
Nat's 6-3 reply to Millie's 5-29     good luck
Anita S' 6-3 reply to Russ' 5-31     CHF docs in Ohio & more
Millie Andrews 6-3     ICD test went okay
Sandy 6-3     meds/lightheadedness and CABG scar questions
Davida S' 6-4 reply to Sandy's 6-3     meds/lightheadedness and CABG scar
Kelly's 6-4 reply to Millie's 6-3     glad it went well
Heather Angus 6-7     is it better to just let her go?
Jon's 6-7 reply to Heather Angus' 6-7     my opinion on treating elderly CHFers
Shelby's 6-7 reply to Heather Angus' 6-7     improving quality of life
Heather Angus' 6-7 reply to Jon's 6-7     mom died this afternoon
Kelly's 6-8 reply to Heather Angus' 6-7     condolences
Kelly 6-8     prayer request
Susan B 6-8     good news update & more
Kelly's 6-10 reply to Susan B's 6-8     that's great news!
Millie's 6-10 reply to Heather's 6-7     condolences
Ginger 6-11     have CHF & am a caregiver too
Roseanne S' 6-12 reply to Ginger's 6-11     the hard part about being a caregiver
Jan's 6-12 reply to Ginger's 6-11     prednisone, weight, fluids, sodium & more
Davida S' 6-14 reply to Ginger's 6-11     taking care of others
Susan B's 6-14 reply to Ginger's 6-11     taking care of others
Donna 6-15     seeking advice & suggestions
Ginger 6-15     thanks to all
Susan B's 6-15 reply to Donna's 6-15     coping
Kelly's 6-17 reply to Ginger's 6-11     caregiving, following the program
Kelly's 6-17 reply to Donna's 6-15     coping
Kelly's 6-17 reply to Susan B's 6-15     thanks for your post
Annie G's 6-17 reply to Donna's 6-15     coping
Donna K 6-17     trying to cope
Tiffany J 6-18     seek others young with heart failure
Jon's 6-18 reply to Tiffany J's 6-18     finding others
Marsha H's 6-18 reply to Donna K's 6-17     antidepressant experience & more
Kelly 6-18     url suggestion
Kelly's 6-18 reply to Donna's 6-17     coping
Karen S' 6-18 reply to Ginger's 6-11     coping with caregiving
Roseanne S' 6-18 reply to Donna's 6-15     I took antidepressants
Donna K 6-19     update and a thank you to all
Diane 6-19     still in shock
Susan B's 6-20 reply to Diane's 6-19     coping with the suddenness & more
Roseanne S' 6-20 reply to Donna K's 6-19     the road to Social Security Disability
Anita S' 6-20 reply to Diane's 6-19     coping, finding information & more
Roseanne S' 6-20 reply to Diane's 6-19     coping, tests, doctors, & more
Kelly B 6-22     what can we do for my dad?
Jon's 6-22 reply to Kelly B's 6-22     possibilities
Diane 6-22     doctors & more
Donna K 6-22     update
Kelly B's 6-22 reply to Jon's 6-22     thanks and more
Jon's 6-22 reply to Kelly B's 6-22     learning is critical
Judy's 6-24 reply to Diane's 6-19     what do I expect with end-stage CHF?
Sandy 6-25     what should we ask?
Susan B's 6-26 reply to Sandy's 6-25     our experience
Donna K's 6-26 reply to Tiffany's 6-18     our experience
Kelly S' 6-26 reply to Diane S' 6-19     our experience
Carolyn 6-27     trying to cope
Kelly S' 6-27 reply to Judy's 6-24     end-stage illness experience
Rita 6-28     very sad about my dad, venting
Donna K 6-29     stopping meds - confused

Davida S' June 3 reply to Sandy's May 30, 2002 - Hi Sandy, That is great news about your husband. It is possible that his EF has increased since he tolerated rehab so well and is doing more. My husband's EF was below 15% and in about 18 months it is back to normal. The best advice is for him to listen to his body. Think of his heart as an injured muscle (which it is) and you don't overwork injured muscles, because you can do more damage. Remind him he may be in a healing process. Remind him it would be foolish to overdo it and undo all the good that has developed. Tiredness and fatique are loud warnings that need to be taken seriously when CHF patients overdue it. My husband did really well in Rehab also and continued to exercise daily even when they kicked him out. He rarely misses his daily walk or light hand weight exercises. There is hope, and your husband's progress is a great example. Hang in there and keep the faith. Take care.

Davida S' June 3 reply to Millie's May 29, 2002 - Hi Millie, How did it go? Hopefully very well. My husband was more scared then I was but I just wanted answers and I prayed that the tests would help. His symtoms were scary enough, so I was relieved when the doctor said the test could give conclusive answers as to what may be going on. I just prayed and put my faith in God and asked my husband to do the same. Please let us know how everything went and I will keep you in my prayers. Take care.

Davida S' June 3 reply to Kathryn's May 24, 2002 - Hi Kathryn, In the back of my mind I am drawing some previous information I remember reading or hearing. Kidney stones can develop from not drinking enough water also. With this in mind, if your son is watching his fluid intake, taking diuretics, and has improved heart funtion, there may be something to the kidney stones. With improved heart function, his kidneys may function better with less fluid retention. When my husband's EF went up, the doctor lowered his diuretic. He now takes 20mg Lasix every other day. Some days, if we are traveling, he may not get a dose for up to 3 days and take it on the fourth day. He doesn't seem to retain any extra fluid because the scales always read the same in the morning when we get home. Talk with the doctor and ask if your son could reduce his diurectic. As far as the increase in fluid, make sure he drinks nothing but water, which flushes out of the body the best. Have him weigh himself every day to make sure he is not retaining the extra fluid he takes in. Tell him to ease up on all salt. It should work out fine if he keeps an eye on his daily weights. If they go up, then he knows to increase his diuretic. He may be losing too much water with the diurectic and creating kidney stones. Keep us informed. The outcome could be helpful to others. Take care.

Nat's June 3 reply to Millie's May 29, 2002 - Hi Millie, Good luck.

Anita S' June 3 reply to Russ' May 31, 2002 - Hello Russ, My father goes to a CHF specialist in Columbus. His name is Dr. Bruce Auerbach. He is located downtown close to Grant Hospital at 423 E. Town Street. His number is (614) 464-0884. He also has an office that he uses on some days in Grove City on Kelnor Drive. That number is (614) 317-0022. I know that he sends his patients to Mt. Carmel West Hospital but I am not sure if he goes to any other hospital. He seems to be a really good doctor and his assistant is John. He will explain more to you than the doctor does if you ask.
     My husband usually goes to the VA in Cincinnatti to a heart doctor, but when he really needs good care he goes to Dr. Keith Pattison, a D.O. who has a new office at 750 Mt. Carmel Mall by Mt. Carmel West Hospital close to downtown. The number is (614) 299-1234. He took care of Phil when he had his heart attacks in 1994. We really like him and Phil has an appointment next month to see him since he is having some problems but can't get the answers he needs at the VA. Phil hasn't seen him for a couple of years and I am not sure if he is listed as a specialist but he seemed to be up on all the new meds. I hope you find the right doctor for you. Take care.

Millie Andrews, June 3, 2002 - Hi All, Dave had his ICD unit tested Thursday and all went well. It didn't fire the first time, it took twice, but then it did. They tested it again and it fired the first time. The doctor said all is well. He is not any better but he is not any worse either. He has heart failure, but no sign of congestive failure. Thank God. Thanks for the prayers, Millie.

Sandy, June 3, 2002 - Hi, I have a couple of questions for all of you. First, hubby had a couple of lightheaded episodes a couple of days ago. His last med increase was lisinopril, doubled from 10 to 20mg a day. He takes this in the morning. Will taking it in the evening make things any better? Incidentally, when these episodes occured, he was outside bending over putting screws in a patio table, then standing up.
     My second question is regarding his CABG scar. When he sweats, it irritates the scar. He's always been a heavy sweater so I don't see this as a sign of CHF. Now the sweat runs down the scar and makes it itch and be uncomfortable. He mentioned it to our doc and was told that if it got too bad that they could inject the scar with cortisone. Does anyone have any comments or experience with this? His CABG was done 3/28/02 so this is a "new" scar. Thanks so much. :-) Sandy.

Davida S' June 4 reply to Sandy's June 3, 2002 - Hi Sandy, I am not familiar with that med. You may want to go to a drug info page to read about details or symptoms; or drop by a pharmacy and ask for the manufacturer's literature from the package (package insert). It sounds like a drop in blood pressure when rising. I don't know if taking it later will help but especially when getting out of bed at night to use the bathroom, he doesn't want to get dizzy in the dark.
     If this is a recent increase in dose, his body may adjust in a few weeks. Tell him to rise slowly and stand for a second before proceeding. This may help. It helped my husband when he had similiar experiences.
     Regarding the scar and sweating, try Vaseline day and night until the scar toughens up, including after showers. It should stay covered in Vaseline. When he can, suggest that he go shirtless and let air get to the scar without the vaseline on, at least a few hours a day a few times a week. The sweating is not helping the healing process. Vaseline and occasional airing migt help. The Vaseline will also protect the scar from the sweat, which is irrating. I don't think cortisone is needed. Keep us informed.

Kelly's June 4 reply to Millie's June 3, 2002 - Hi Millie, I am glad things went well with Dave's test. I will continue to keep both of you in my prayers.

Heather Angus, June 7, 2002 - Hi, I posted here about a year ago when my mom was diagnosed with hear failure. The intervening time has been good but now she is failing very rapidly, at 90 years of age. Her legs are swollen to the point of seeping and she has almost no energy. She went to the ER and then was admitted to a hospital about 2 weeks ago. She came out 6 days later no better, and went into the nursing home near me and my sister, where she is getting good custodial care. However, she is extremely weak, can hardly move, eats almost nothing, vomits what she does eat, and has frequent diarrhea. Her mind is still clear, but she's completely miserable. She had been taking heart medicine (Digitec/Lanoxin) for years but in the hospital they found she was overdosed on it and they stopped it.
     Here's my question. I pushed her to agree to see a cardiologist, hoping that he would put her back on the heart medicine. I thought the heart medicine might relieve some of the swelling and allow her to have more energy during the time she has left. The appointment is for next Wednesday. However, another member of my family pointed out that making her heart stronger (with the medicine) might just have the effect of prolonging her misery. It would be less cruel to let her slip away in the next few days, rather than fighting so hard to keep her here, maybe more alert but still sick and wretched. Now I'm troubled and I think maybe I shouldn't have urged her to see the cardiologist. Has anyone here faced anything like this? Do you have any thoughts on the situation? I'd be grateful for any ideas.

Jon's June 7 reply to Heather Angus' June 7, 2002 - Hi, One thing is clear from all my reading and talking to people with heart failure: if you place an elderly person on standard heart failure meds - like any good doctor should do - they respond almost as well as a younger person does. They improve and their symptoms improve, they feel better and live longer. Making her heart work better cannot help but improve her symptoms for the simple reason that it is her weakened heart function and physical changes caused by it that are making her feel rotten.
     She should be immediately started on an ACE inhibitor, a diuretic, spironolactone, and possibly digoxin again. Obviously her doctor was not on the ball - he should have been doing routine blood testing to prevent overdose of digoxin all along, and he is criminally negligent in my personal opinion if he did not have her on an ACE inhibitor and diuretic already at the very least. Just my two cents worth. If it were my mother, she'd be on these meds pronto - and I am sensitive to suffering, having experienced a bit of it myself over the years.
     Keep in mind that if she is truly end-stage and the standard drugs would not help her - which I doubt - her life quality could be vastly improved even if it shortened her life, with inotropic drugs. Jon.

Shelby's June 7 reply to Heather Angus' June 7, 2002 - Hi Heather, I second exactly what Jon said. At the very least, she needs a diuretic for the edema. You should also look into getting her support hose, available at a medical supply store, or ask a doctor or nurse to recommend some. That will help with the circulation in the legs, which is common among many older people, not just heart patients. Those two steps alone should help to reduce her discomfort.
     Regardless of how many weeks or months, or even years she may have left, there is no reason for her to suffer. Ask the doctor about Phenergan for the nausea and vomiting. I had a real problem with nausea due to low blood pressure. I take Phenergan as needed and it has completely relieved the nausea. Also, get a home BP monitor and check her BP; that could also give you an indication of when she feels bad or better. Even if she chooses not to go back on the heart medicine, relieving the edema and nausea will greatly improve her quality of life. Good luck and my prayers are with you.

Heather Angus' June 7 reply to Jon's June 7, 2002 - Hi Jon, Thank you for your reply. I am sorry to say that mom died today around 3:00 PM. Perhaps her life could have been made better, in quality and length, if I had "tuned in" here sooner, but she is now in better hands than mine or (obviously) her doctors'. Thank you again, and God bless you.

Kelly's June 8 reply to Heather Angus' June 7, 2002 - Hi Heather, I am sorry about the loss of your mom. It sounds like her last few weeks were a struggle. Take comfort that she is no longer suffering. My prayers go out to you and your family. Even though we want our parents around for a life time, sometimes it's better to let them go, especially when they're suffering.

Kelly, June 8, 2002 - Hi, A friend lost her husband this past week. He was a very active man who volunteered on ambulances in his community, went garage saling, loved to coupon, and loved his family and life. Apparently, he had previously had a silent heart attack that did extensive damage and the second one killed him. They had no idea he'd had the first one. Please send a prayer or thought to Joyce and her family. I'm sure they'll miss Frank a lot.

Susan B, June 8, 2002 - Hello all, I wanted to share some good news about my husband, George. He just had his second 6-month checkup after getting to full doses of his meds. His EF is up to 45 to 50% - he started at 15 to 20% a year ago. His walk test is improved and he feels good, with the exception of not being able to go back to fighting fires. However, George is doing well at his new job as a dispatcher. The other fire fighters are encouraging him to be happy there and make a difference by using his knowledge of fire fighting in the field.
     George is happy that he gets to cut down on the Lasix. I'm hoping that cutting down on the Lasix helps reduce his gout attacks, which are happening about one every 2 to 3 months. Until he went on Lasix, he had not had a gout attack in years, and he had gotten to stop the gout meds. I hope this happy news helps someone else have hope.
     A few people asked me if he is well. I am not sure how to explain it to other people. He is not "well" but he is doing well with drugs and exercise and his belief that he is well. I can see that he is not the same as he was before he got sick. He still has good days and bad days. He does not tolerate heat and cold the way he did before. He gets tired faster but the good days still outnumber the bad ones.
     He has a little game about how sick he is. If I ask him to do anything or get something, and he is having a good day, he coughs a little and says he can't do whatever I have asked him to do because he is sick. We both laugh and smile. He loves putting on the show. Friends and family look at me as if I had kicked a puppy! Everyone who is around us on a day to day basis knows better though. If George is having a bad day he gets very quiet and tells me that he can't do whatever I asked him to do and walks away. I try to watch him before I ask, to see which kind of day he is having. I want him to feel as "normal" as possible because I know that is how he wants to feel.
     Thank you for your support. My prayers are with you all. Again, Jon thank you for all of your hard work. You are making a big difference in people's lives, Susan B.

Kelly's June 10 reply to Susan B's June 8, 2002 - Hi Susan, Great news! Also, I'm glad that there was a position he was able to step into. I'm sure with his expertise he is a great help to the fire fighters. Even though he'd rather be helping to fight the fires, he still is, just in a different way. I love that you're able to keep a sense of humor in your relationship. Sometimes it's good and sometimes on this end it's not so good. Sometimes my husband uses his sense of humor to mask if there's something seriously wrong, because he doesn't want to burden me or worry me with it. George, you hang in there. It's great that you're doing so well.

Millie's June 10 reply to Heather's June 7, 2002 - Hi Heather, I am truly sorry for the loss of your mother. Our prayers are with you and your family, Millie.

Ginger, June 11, 2002 - Hiya's, My name is Ginger and I am usually on the other side since I have had DCM for almost 5 years. However, I also take care of my stepdad, who has DCM and CHF so I thought reading the posts here may help give me some insight as to what you all deal with and how you deal with it - like when they don't listen to what they need to do, cheat with salt, etc. He is a class 4 CHFer and has pulmonary problems that don't help matters because he has to take a lot of prednisone, so it's a job to keep the fluid down. Thanks for letting me lurk. If anyone is dealing with any of the same problems I would love to hear how you're getting around them. Thanks. Hugs and prayers, Ginger.
     PS. After having CHF myself for almost 5 years, if I can help anyone, please just ask.

Roseanne S' June 12 reply to Ginger's June 11, 2002 - Hi Ginger, I am not sure I can tell you anything you don't know first hand, but you have to remember it is his life. If he chooses to cheat, so be it. You cannot control the actions of another person. After he faces the problems caused by the cheating he may stop cheating, but don't count on it. It is just like stopping smoking or losing weight - you cannot do it for someone else. All you can do is offer support and not encourage the problem with your own behavior. When my husband had to stop the salt, I did too, with no salt shakers in our house and I watch the sodium content in everything I buy or cook. I do not even use salt when he is not with me and I was a salt abuser big time. The doctors told me that if I smoked, my husband had no chance of quiting, and so on. It is no different than being on a diet and having a spouse eat ice cream and goodies in front of you.
     The hardest part about being a caregiver is not the actual care. It is accepting that you cannot control someone else's actions. Good luck, Roseanne.

Jan's June 12 reply to Ginger's June 11, 2002 - Hi Ginger, It sounds like you have a lot on your hands, but it also sounds like your positive attitude is showing through! My husband also has CHF and pulmonary difficulties. We have the same problems with prednisone and the weight problems associated with it. I don't know if the prednisone is responsible for the weight gain, or the edema.
     His doctor recently started reducing the prednisone and added methotrexate to his regimen. He is still fighting the weight battle. We are hoping this will even out because he takes a lot of diuretics as well. I have an entire herb garden and have learned to use many things, so salt is not really a problem; fluid is though. He still measures all fluids. The doc reduced his intake to 1500 cc daily. I continue to hope the reduction of Prednisone will help. Jan.

Davida A's June 14 reply to Ginger's June 11, 2002 - Hi Ginger, All I can say is that dads are the hardest to get to comply. I am not sure if it's because it's coming from us or what but there are probarly more dads out there than moms that won't comply. I agree with Roseanne; it seems as if no input from you will change anything. My dad is so stubborn it makes no sense. He is so stubborn if he was my husband I would have to serious consider leaving. <g> Pray that he will receive and heed some guidance. Take care.

Susan B's June 14 reply to Ginger's June 11, 2002 - Hi Ginger, Roseanne is correct. If your stepdad does not want to follow the program then there is not much you can do about it. He has God's gift to all of us - free will. The hard part for caregivers is that we cannot take responsablity for the other person's actions. We can help, suggests, assist, and support. We can't make a "horse drink." So by all means show the horse the water, tell him how good it feels to eat right and follow the program, but he is the only one who can do it.
     It sounds like you are following the program for yourself. Great! Don't feel guilty if he doesn't do what he should do. You have no control over it and although you have to live with the outcome of his actions too, he hurts himself the most. Good luck, Susan.

Donna, June 15, 2002 - Hello everyone, I'm Donna, the 15 year wife of a man who was diagnosed in March of 2001. It has been a nightmare ever since. Ronnie has gone from being a very active person to not wanting to do a thing except sit around and gripe. I'm 32 and he is 34. I love him very much but sometimes I just want to pack up and high tail it out of here. We have 3 kids ages 14, 12 and 10. Sometimes even they want to run. The doctor won't give him anything for depression. I'm not sure what to do! Am I awful? Any advice gladly taken! Donna.

Ginger, June 15, 2002 - Hi, Thank you all of you for your input. You're right: I can't make him. I will be back and I hope you all have it a litle easier with the ones you care for. It's hard to watch them go through it and it's harder when you know it could be better if they would listen. Thank you again for all your advice. :-)
     I should have visited this side of the forum 2 years ago when I started being his caregiver. I am lucky because my DCM is pretty stable so that helps me be able to take care of him, with the biggest problem being getting tired. See you all soon. Hugs and prayers, Ginger.

Susan B's June 15 reply to Donna's June 15, 2002 - Hello Donna, You cannot change him, you can only change yourself and your responses to him. You get a big hug and pat on the back for looking for new possible answers for the solution. That is the first step to finding a way of handling the problem. Good job.
     I really don't have an answer for you. My husband is in denial and believes that he can go back to fighting fires. He follows doctor's orders and is working every day to get better. Some days are good and some are not so good. Overall, he is getting better.
     Are there any projects or things your husband wants to do before this life is over? If so, maybe this is the time to start them. I know that when I feel bad I like to start dreaming of a better life by making, fixing, or doing something. When things are really bad I buy house plan books and put my mind to work. My husband does things to make himself feel better, like play music or watch funny shows. I have had some really bad times and I would only watch happy movies and play happy music. I think I read that to replace every bad thought it takes somewhere between 3 and 10 good thoughts to overcome it, so I try to balance the bad with the good. I hope this helps, Susan.

Kelly's June 17 reply to Ginger's June 11, 2002 - Hi Ginger, I agree with everyone else's posts that you can't be responsible for the actions of your dad. You can only be there and show him support. The person with CHF is the only one that knows how it feels if they don't follow the diet and medication regimen. Having CHF yourself, you know how you feel when you cheat or when you follow the routine. I know that when my husband goes astray from the diet he usually feels miserable and realizes he made a mistake, but only he can correct it. Good luck to you and your dad.

Kelly's June 17 reply to Donna's June 15, 2002 - Hi, You aren't awful, but human. My husband still sometimes gets depressed on bad days, but the goods ones now out weigh the bad ones. Does your husband have any hobbies or interests? Keeping his mind active with positive things is important. Rather than dwell on the negative, emphasize what's positive in his life - you, his kids and other family, etc.
     Larry got a call from his dad tonight and it was very stressful for him. His dad suffered a massive heart attack on December 31st. They are both in different stages of denial about their disease. He's hoping to see his dad tomorrow and I'm just praying that all goes well with that visit and it's not too stressful on either of them.
     Remember to make time for yourself too. I'll keep you and your family in my prayers.

Kelly's June 17 reply to Susan B's June 15, 2002 - Hi, Your information about bad versus good thoughts is very interesting and I believe very true! Thanks for sharing this great information.

Annie G's June 17 reply to Donna K's June 15, 2002 - Hi Donna, I was 40 years old and our kids were 14, 12 and 10 when my husband got sick. It was very frightening at first. I was sure he was going to die on me. I already had a disabled son and thought it couldn't get much worse. I explained to the other two kids about dad's diet and I decided that for the most part we would follow it. I didn't want the kids eating chips and stuff in front of him that he really missed.
     Is your husband on all the meds he should be? Does he follow his diet (very important!), his fluid restrictions, quit drinking alcohol, and quit smoking? Is he feeling worse than he needs to? You're not bad for not wanting to live with an individual that just draws from you and gives nothing in return, but is he getting good medical care, first?
     Maybe he needs to hear how much you want to help him enjoy your life together. Maybe he needs to go to the other side of this forum and interact with the other people with CHF who can really understand him. Maybe he does need antidepressants. Get them for yourself and then put them in his coffee. ( just kidding!)
     No, it's not easy and I'm sure there were times we all thought about leaving our loved ones and didn't just because we were worried about how bad we'd look to everyone else. Hang in there. Make sure you get some counseling for yourself, which may help you find out if maybe you are overwhelmed right now. Maybe you and the kids need to get away for a few days? Take care, Annie.

Donna K, June 17, 2002 - Hi, Well, there were a lot of things he was doing before he got sick; we had our own auto repair business and were doing quite well and we raced cars, but when he got sick it's like, oh well. I feel like he just gave up. I wish the doctor would give him something for depression because if you do not want to do things mentally, how can you physically? Sometimes I just want to yell and tell him to either wake up or just give up. I know this is mean but what else to do? I hope no one thinks I'm awful. I really love him. Thanks for this site - it has helped!

Tiffany J, June 18, 2002 - Hi, My husband is a 33 year old recently diagnosed with CHF caused by viral infection. The echo showed a 15 to 20% EF and cardiomyopathy. He had a cardiac cath while in the hospital but it showed no CAD.
     I am a nurse so I understand the medical ramifications. Now, I am looking for those who are experiencing similiar circumstances - young people with CHF. I would enjoy speaking with someone in a similiar situation. He is responding well to the meds (Lasix, digoxin, Aldactone, aspirin, Coumadin, Altace, Coreg) and following dietary recommendations. He returns for another echo in August to see where we are at. I would love to talk to you!

Jon's June 18 reply to Tiffany J's June 18, 2002 - Hi Tiffany, I was diagnosed CHF at age 36, and had it at least a year before that. You can also find many people to e-mail at Who's Who and Me Too. :-) Jon.

Marsha H's June 18 reply to Donna K's June 17, 2002 - Hi, I am a CHF patient. When I was diagnosed, I had been on antidepressants for quite awhile and they had made a big difference in my life for the better, but my heart doc almost immediately took me off the antidepressant because he said it was contraindicated with CHF and with the meds he wanted to give me. I went off them that day. Unless there is something new or different going on with your hubby, the antidepressants may not be a good option. I found that Dr. Silver's book did more for my attitude about my CHF than anything, and it may help your husband some, too. My prayers go out for you and your family.

Kelly, June 18, 2002 - Hi, Here's a site I found that might be of interest to some of you: I just found it while seaching. Here's hoping everyone had a great Father's Day and a nice weekend.

Kelly's June 18 reply to Donna's June 17, 2002 - Hi Donna, There are still days that Larry goes through this! Sometimes you do need to boot him a bit and make him think. Last evening we planted a few plants we'd gotten over the weekend, 4 snapdragons and 4 white plants, I've forgotten their name already. I wanted to add some color to my flower beds so he helped me plant them. We had a nice evening and now it's raining so I'm glad to have gotten them in the ground. Donna, hang in there. The good days will start to outweigh the bad ones, but it does take time.

Karen S' June 18 reply to Ginger's June 11, 2002 - Hi, When my husband began taking prednisone he gained 20 pounds in 2 weeks. He was given an additional diuretic and lost 10 of the 20 pounds but had to stop taking it because it was affecting his kidneys. Over the past few months he is being weaned off the prednisone but I don't think he's lost any more weight. In addition to the fluid retention, prednisone also causes mood alterations. My husband has always been strong willed and a bit of a challenge, but I believe the prednisone has kept him on a roller coaster of emotions. He gets angry over the most inconsequential things. He'll be off the prednisone completely pretty soon, but he's taking methotrexate and bextra now so I'm waiting to see what side effects will raise their ugly heads.
     When my husband first got sick, I'd get all upset when he didn't "follow the rules." Now I've decided that if that's what he choses to do I have no control over it. The key for me is to keep my own peace and not let it upset me. That usually works out better for both of us! Take care, Karen S.

Roseanne S' June 18 reply to Donna's June 15, 2002 - Hi Donna, One more voice heard from who has been there. You are not awful. I would consider a new doctor if your present one will not deal with your husband's depression. My husband was depressed and the doctors picked up on it. My husband refused to take the medication but finding out the doctors thought he was depressed made him change his attitude. Walking is a wonderful and a natural way to deal with depression. On the other hand, I did end up on antidepressants. I took a very mild dose, just enough to make me feel like I could cope. When someone's life changes so drastically, it is hard on everyone.
     Are you employeed outside the home? If not, you might want to consider volunteering or becoming very active in the church, something to get you out and away for even a few hours every week may help you feel like you can cope. This is a wonderful place to vent. Take care of yourself, Roseanne.

Donna K, June 19, 2002 - Hi, A very big thank you to everyone - you all are life savers and I am going to the doctor as soon as possible. I was working up until about 2 weeks ago remodeling houses but was fired (a whole different story), and I am now looking hard. As for changing doctors, we are stuck between a rock and a hard place. Ron has been turned down twice for SSI. We have a lawyer and are waiting for the final hearing but in the meantime we have no insurance or Medicade. This doctor is willing to wait for his money and not many others are! Thanks again, everyone, Donna.

Diane, June 19, 2002 - Hi, I am the wife of a 56 year old recently diagnosed with CHF. I guess I am still in shock and reaching out. I know others have worse crosses to bear and my heart goes out to everyone.
     Just briefly: I knew my husband had COPD. He worked Shell Oil refineries for 30 years. However, his COPD was not apparent. Last December everything just went downhill all of a sudden. Finally, after over 5 months of no eating, no sleeping, and not doing anything - the pulmonologist didn't really say anything other than that my husband had severe emphysema and that's the way it goes - some other tests were done at my insistence and despite no heart attack and no blockages to mention, half his heart is dead. His EF is 10% and he has CHF and sleep apnea.
     It's just a shocker due to the suddeness of things happening. One day he was a strong man chopping wood and it seems the next day he was in very bad shape. He has a good cardiologist now. What can I say? It's just a shocker, and scary and worrisome, Diane.

Susan B's June 20 reply to Diane's June 19, 2002 - Dear Diane, What you are feeling is normal. It seems that many of us are in the same boat. My husband is 46 years old and until just over a year ago he worked 2 jobs - one fighting fires and one delivering plumbing supplies. The video tapes from Thanksgiving 2000 show him doing fine but by January 15 of 2001, he was in a-fib. He went to the doctor 3 times the week they discovered that he was in a-fib.
     However, it was in March of 2001 that they told us he was in heart failure. This seems to happen a lot - people appear well one day and very ill the next. Also, it is common for people to tell you that your husband looks too good to be as sick as you claim he is. I'm lucky in that my family understands that my husband is sick, but people who are not as close look at him twice. My sister was teasing me and saying that she thinks he looks better now that he is so sick. She was seeing him on a good day. On his bad days, he stays close to home, often in bed or on the sofa. Only his parents, a few very close friends, and I will get to see him on the bad days.
     Even at the ER, we have to get someone who knows about CHF. One time they listed on his chart that we were at the ER for a cold. His fever would not break at home and he was going downhill fast. He went downhill in the ER while waiting over an hour to be seen. This is one of the hard parts about CHF - people can go downhill so fast.
     Please read The Manual. You will be surprised at the information you will need to know to help you with this illness. Everyone here is great to listen and be supportive, even when you feel alone. You are not alone. This is a great place to vent and if you want, to write for advice because we understand. It helps me just to read what everyone else is writing. Knowing that I am not alone helps me get through the bad days. My prayers are with you and your family.
     As always, thank you Jon. I would be lost without this site and your information. I also believe that my husband would not be doing as well. The fact that I read your site is even on my husband's chart, Susan.

Roseanne S' June 20 reply to Donna K's June 19, 2002 - Hi Donna, Contact your Congresspersons. Tell them exactly what is wrong with your husband and send them copies of any paperwork you have stating your husband's condition. If you have had a bad experience with anyone at Social Securoty, tell them about that too, with the name of the person you spoke with if possible. It can't hurt.
     When we filed for SSD, the caseworker at the SSA office said it should go through with no problem - famous last words! I received a letter from the SSD review person wanting to know my husband's normal activity level. I called her and told her that I couldn't fill out the form because the man had no activity level - he is tied to a hospital bed. Her reply was, "I don't know why he should be that bad, nothing I see from his records would indicate there is anything wrong." Now, three doctors filled out forms stating "This man will never work again." This SSA person said, "Two of my brothers had heart attacks and returned to work in 3 months, your husband should be able to do the same if he wants to." She decided she would put the claim on hold to see what would happen.
     At that point I hung up and started writing letters. I e-mailed my Congressmen via the Senate and House web sites and made phone calls to the regional office. I received e-mail back the next day, telling me I would receive letters by snail mail. I was sent forms from all 3 offices giving them my permission to talk to SSA on our behalf. Within 36 hours of the time I mailed the releases I received a call from the local SSA office telling me his disability had gone through. I sent a thank you letter to all 3 offices. Do not give up and P.U.S.H. (Pray Until Something Happens), Roseanne S.

Anita S' June 20 reply to Diane's June 19, 2002 - Hello Diane, Welcome to Jon's Place. You have come to the right place to get answers about your husband's problems. Just because someone else has problems you think are bigger than your own doesn't mean that we think you don't have a right to worry and vent here. I can understand your being in shock right now, but don't let it get you down. Your husband's EF may come up with the proper meds and the right CHF doctor. You were right to insist on his doctor doing more tests and you need to make sure that you keep up on what tests and meds your husband needs.
     If your husband is anything like mine, he can't always think clearly and needs you to help him keep up on what needs to be done. Read The Manual and you will learn what you need to know to help your husband and what to ask the doctors. Do not give up and feel free to ask any questions you have. You will find everything you need to know here and if you don't understand or can't find something, then just ask and someone here will help. Take care, and know that we all on this forum care about you and your husband, Anita.

Roseanne S' June 20 reply to Diane's June 19, 2002 - Hi Diane, We were told by a lung specialist and a cardiologist that my husband had pneumonia, not CHF but after a rush to Club Med they decided he had CHF, not pneumonia. Then we were told he had emphysema and TB, not serious CHF. He had serious CHF.
     One year later, despite smoking 3 packs of cigarettes a day for 24 years, loading grain barges, cleaning coal barges, and working crushed in a gravel pit, his lungs are clear. We were told by a gastro-specialist my husband's gallbladder had to come out right now, at the same time the cardiologist was saying he would never survive the surgery. He had one last test before surgery and the problem was fluid in his liver pressing on his gallbladder. He still has his gallbladder.
     The moral to this story is to keep asking for tests. We also went through sleep apnea, also caused by the CHF. This is why everyone connected with this site will tell you to find a CHF doctor. A good CHF specialist is worth his weight in gold and well worth the drive to get to him. You cannot believe the difference when they are actually treating the problem that is causing all the other problems.
     Many of us have seen our lives change in seconds. You are not alone. It is very difficult on everyone in the family. Just hang in there and take one day at a time, Roseanne.

Kelly B, June 22, 2002 - Hi everyone, My dad is 55 years old and for the last year has been living with CHF. He has no energy and gets very lightheaded, with breathing difficulty from minimal exertion, like walking through the house or even talking too long. He says he feels like he's not getting enough oxygen and his body is very weak. We have been to 3 different cardiologists ( North Arundel, Johns Hopkins, and St. Joseph doctors in Maryland. We just can't seem to make any improvements. He has low blood pressure and that seems to be a problem with his ability to tolerate the usual meds. He is taking digitek, Coreg, Zestril, diuretics, and Buspar (recently for possible anxiety). The doses have been increased and decreased again and again. We just can't seem to make progress. He starting to feel hopeless and I'm feeling helpless. I'm very grateful for any info. Thank you, Kelly in Maryland.

Jon's June 22 reply to Kelly B's June 22, 2002 - Hi Kelly, I am not a doctor and I don't know anything about your dad's condition, really, nothing at all. Therefore I can only state possibilites that may not even be a good idea for him. However, some things to think about include:

If he wants to beat that helpless feeling, he has to be an active participant in his own care. That includes sticking to the diet, the exercise, the meds, and learning everything he can about his condition. A passive patient is a sick patient. Also, he needs to be proactive to feel better about his life. That includes learning which supplements might help and trying them out for at least 90 days, and staggering his meds until he finds a combination of times that works for him. Jon.

Diane, June 22, 2002 - Hi, First I want to thank Jon for directing me to this message board. I appreciate the e-mails I have received and although I need support up close and personal during this time, as I know all of you do as well, coupled with my own anxiety disorder, this is wonderful.
     The old saying is that a doctor can kill you or cure you. Well, I may be having a senior moment here, but,... for the year my husband also had COPD and went to his pulmonologist, who told him that he could not sleep at all and could not eat, nor move from the couch; this rushed doctor who is not a good commnicator would simply say, "You have a lung disorder. What do you expect? Get real.". I would have fight after fight with my husband saying there is something else wrong here and then he finally would go to the local MD, who would do tests for allergies and a chest x-ray. The doc say a marginal enlarged heart but the pulmonologist said he did not trust that result and to ignore it.
     For months and months I begged my husband to go to the Cleveland Clinic while he tantrumed, saying to leave him alone and that the doctor knew what he was doing. I even told his lung doctor's receptionist/nurse that I envisioned my husband soon dead, with me asking for an autopsy, and that I could see a large lawsuit. Trust me this was not what I wanted to say, but desperation and instinct drove me. Finally a heart echo and then finally tests taken at Cleveland found out that his heart was half gone, and he had CHF.
     So I concur with what I have read here, that one has to recognize that doctors are not gods and personally I would say that few are really interested in their patients' well being. One has to search for a good doctor and often we caregivers have to really nag our other halves. I just really feel hurt and angry that it took this long and that I had to in essence fight for my husband's life. I'll never know if time lost caused some of the irreversible damage.
     On the other side of the coin, I thank God that my husband did get finally correctly diagnosed and that he is alive. Where there is life, there is hope - another one of those old sayings!

Donna K, June 22, 2002 - Hi everyone, Well good news and bad news yesterday at the doctor's. The bad news is that we are back in heart failure and have gained 9lbs to 409 lbs. Eighteen months ago we were 325 when we left the hospital. The good news is we get a new doctor and have been enrolled in a CHF clinic. At least, I think it's good. Thanks everyone and God bless, Donna.

Kelly's June 22 reply to Jon's June 22, 2002 - Hi, Thank you very much for the info Jon. The ARBs sound like something to check out. You asked about the Johns Hopkins cardiologist. I don't think he (or the others) are CHF specialists. Actually I didn't know there were CHF specialists. You had mentioned the inotropic drugs that make your heart beat stronger. In the beginning he was taking something to make his heart pump more efficiently, and was feeling pretty good but then suddenly crashed and has felt terrible ever since. The doctor said his heart wasn't strong enough to tolerate the med and it was making his CHF worse. He lost 45 to 50% heart function after his heart attack last year. The doctors say that because of his very low blood pressure it is hard to reach the target doses of meds.They really don't seem to know what else to do. Not to mention they seem so rushed and busy, I don't know how they keep up with everyone's individual cases. One more question if I may. What makes a person a candidate for heart transplant? Thank you very much for the help. Sincerely, Kelly.

Jon's June 22 reply to Kelly's June 22, 2002 - Hi Kelly, I'm exhausted so this will be short and to the point - I hope I don't get too brusque. Obviously, you have made a good start: you found this site and started asking questions. In my book, that makes you bright and motivated so I'll be straight with you.
     Right off the bat, I'd say you need to learn a lot more about heart failure before trying to figure out what treatments may help. Until you know what the meds are and what they do and how, you can't know whether doctors are treating him properly or not. Also, you have no idea at present what drugs he has taken, and exactly why they did or did not work.
     You simply cannot afford to take everything a doctor tells you as the one and only truth. You must learn so you can ask tough, intelligent questions and know whether a doctor is on the ball or not - they are most definitely not all up to speed. Heart transplant is exchanging one set of problems for another set of problems, and should only be considered after he has been cared for by a CHF specialist - to see how well he can be with proper treatment.
     If a doctor seems rushed, get another doctor. Period. My CHF doc is setting up a heart transplant program (he ran one at another hospital before his practice moved). He also is a professional quality photographer (having had successful exhibits and assignments), has a family, and deals extensively with device manufacturers, all on top of being a practicing heart failure specialist, seeing patients every day. He is an active and published heart failure researcher. Talk about busy! Still, when he walks into a patient's room, he has all the time in the world and he never rushes anything when he talks to a patient. Keep firing doctors until you get the right one.
     Again, I hope I don't sound rude - I am just very tired. This is your dad's life and he and his family must take that fact seriously enough to do these things or he isn't going to get any better. Please print out The Manual at the very least and study it and then get him to do the same. It is the place to start. Jon.

Judy's June 24 reply to Diane's June 19, 2002 - Hi Diane, Hang in there. You seem to be at a great site. My husband had his first CHF in 1991, a stroke in 1995 and COPD in 1999. Each time it seemed like he was fine one day and then look out when night came. Now we are in end-stage CHF and he is in the hospice program.
     I agree with everyone who has said that you must become informed and a real advocate for your husband. Many times we have gone to an ER and I have said that he was in CHF, but their tests didn't show it. I learned quickly to say tough, if he was okay they could take him home - I wasn't. Without hours they found out that I was right.
     Live each day to the fullest, enjoy the day and the family. Keep some time for yourself though even if it means going to work. I'm not sure what I would have done without my school, kids, and staff.
     Well, time for a question for everyone from me. What can I expect to experience during this end-stage process? Judy.

Sandy, June 25, 2002 - Hi, Well, hubby had his first echo 3 months after the cath that showed 90% blockage and an EF of 15, and after triple bypass surgery. We meet with the cardiologist on Thursday afternoon to learn the results. Other than asking about EF, heart wall thickness and ischemic areas, does anyone have any specific questions we should be asking? Thanks, Sandy!

Susan B's June 26 reply to Sandy's June 25, 2002 - Hi Sandy, Great question. I would ask about rehab. My husband has improved so much from rehab, and I don't think that he would have gotten it if I had not read this life-saving site and asked the doctor for rehab.
     I would get the treatment plan your husband is to follow. For example, my husband has check-ups every 6 months. They do x, y, and z. We know what the game plan is for the next 6 months. Are all of the meds the right ones for the long term? What activies, if any, should be limited? We talk to my husband's doc about life style and quality of life issues too. Good luck, Susan.

Donna K's June 26 reply to Tiffany's June 18, 2002 - Hi Tiffany, My husband also has CHF and is 34 years old. He was diagnosed in March of 2001. We don't know what caused it but he did have bacterial endocarditis (infection on a heart valve) nearly 14 years ago. They are not sure if that caused it. I'm not sure if they know anything sometimes. <g> You are welcome to e-mail anytime! Donna.

Kelly S' June 26 reply to Diane's June 19, 2002 - Hi, I can empathize with how you're feeling. Larry worked weekends and one morning he got up and just couldn't go anymore. He never has been one to go to the doctor unless he's literally half-dead. Well, that morning he said, "Take me to the emergency room." I knew it wouldn't be good news, but sure wasn't expecting the diagnosis we got - which took 2 weeks to find out!
?      When Larry was orginally diagnosed his EF was 10 to 15%, it's now up to almost 50% with the meds, but they think it's pretty much stabilized. We're not sure there's room for much improvement, without a heart transplant but he is truly thankful that he's able to at least get around some.
     Here's hoping that your husband can be stabilized with medications and get some enjoyment during his retirement years. I'll send prayers your way, and believe me, I understand your bewilderment.

Carolyn, June 27, 2002 - Hi, I've been sitting here reading the notes. I ran into Jon's Place some months ago, right before my 37 year old husband had an aortic aneurism repair and heart valve replacement. He got through the surgery great and was doing beautifully, but at 3 months post-surgery, after he'd been taken off Lasix and potassium, he started to get fluid in his lungs. We went to the doctor the next day and they did an echocardiogram. His left ventricle, somehow, someway, sometime - we simply don't know - was severely damaged.
     I plan to ask for the EF number tomorrow during his Coumadin checkup because I simply don't know. He's on the slow climb to full dosage with Coreg and it is so hard. He is frustrated and angry. We have not been given any sort of satisfactory answer as to why although there has been talk of heart transplant. I hardly know what to do. He is working full-time but that is about all he does, and he hates that with a passion. We play lots of board games with the kids (ages 10 and 13, so old enough to know all too well things are not good) and we go see movies but for a guy who used to play tennis hard 3 to 4 times a week and more than pull his weight around here, it is depressing.
     I want him to seek a second opinion and plan to send him to this site tomorrow to read through things. I think it will help. I saw a link leading to supplements that will help him feel better. There has to be a way to make him feel better, even though coming to terms with a possible heart transplant someday (next year? next month?) is very tough. I saw a note on here from someone else whose husband looks great, and that is the way Kel is. He is a big guy, looks strong and healthy but he sure isn't, and we both fear he's going down a hill instead of improving. The future is so scary but right now I am most concerned about him. He told me the other day that sometimes he feels like he just can't face whatever will come.
     I don't know how often CHF results from surgery if that is even when his heart damaged happened but I can't find much info about it. This site will help tremendously, though. I'll make sure he reads all he can. Hopefully we'll find some tips that will help beyond what we are doing, Carolyn in Texas.

Kelly S' June 27 reply to Kelly B's June 22, 2002 - Hi, Jon's right, learning as much as possible and being well informed is a part of helping your father. Ask questions. There's no question that is stupid, just unanswered. Even if you don't get the answer to the question you're asking, you may get answers to some of your other questions. I'm the active one that asks questions while my husband is the passive one who does whatever they tell him.
     When my father was in hospital for COPD and emphysema, he became very agitated and I asked the nurse if they'd checked his theophylline levels? She replied no. When they did, they found that he needed meds to regulate it and he calmed down. The doctor even complimented me on picking up on this.
     Following diet and medication regimen is important. The diet has been a difficult one for my husband, but each day gets better and he now realizes how different it makes him feel when he goes off his diet. Good luck to you and your father; you're both in my prayers. May each day get better for you.

Kelly S' June 27 reply to Judy's June 24, 2002 - Hi, My father passed on after an extended illness of emphysema and COPD. The last month was difficult. I think the last time he was taken to the hospital he went into respiratory arrest and was rescusitated. I believe at that point he suffered a stroke also, although we weren't told that, but just some of the things happening to him led me to believe that.
     The last week was hard. He was alert up to his last day. We had to move him from the hospital to a nursing home. Upon arriving at the nursing home, they were shocked that he was even moved and he was gone within 24 hours. His last hours he was in a deep coma. We just stayed with him and talked to him. He passed on a sunny April morning with the sun rising. It would have been a great day for him as he was a fisherman and I'm sure had he been healthy he would've been out fishing.
     I hope this helps. I think a lot depends on how your husband and you deal with death. Everyone has different views on dying and each person handles it differently. I'm sending prayers your way that you and your family find a peaceful resolve to this, and that you'll have many, many more years together before you have to deal with his passing.

Rita, June 28, 2002 - Hi everyone, My dad has CHF and is in the end stage of it. In the last 3 months he has gone from being able to drive, fish, etc, to being on oxygen 100% and can't walk hardly at all. He is so bad he also has emphysema on top of all this and he will not quit smoking! I am 36 and he is 65, and I am so sad that I cry every day. He is going to die soon - I know that. He almost died 2 weeks ago. His lungs was full and they had to put him on the breathing machine for 2 days to get all that junk out of his lungs. He could not breathe and was really hot. He kept screaming that he was hot and it completely broke my heart. The doctor came in and said either use the breathing machine or you will be dead within the next 10 minutes. He didn't want the breathing machine but my mom told them to do it. He has since signed a DNR so I know that next time he will die.
     He is home now but right now he is doing poorly and I think he will be in the hospital within the next day or two. I will get that call again to go. I hate to say this but I smoke too. I am going to quit - I have to! I love my dad so much and I go to his house every day. My mom is doing poorly too (she is not sick) just because of my dad - so sad. My mom has never smoked and her health is really good. I have epilepsy but besides that I am fine.
     I have never seen someone so sick in my life and still be alive. He can't even walk down the hall to go to the bathroom anymore. We had to get him an adult potty chair and put it next to his bed for him to use. I hate this! Sorry, I just can't stand this: seeing my beloved father this way. It hurts so much and is so hard. He was so independent, traveled all the time, played golf, fished, was not the type to sit at home, and now he can't go anywhere. He had a doctor's appointment today and couldn't go because he was too sick. Can you imagine that? Too sick to go to the doctor! He really is; he couldn't make it out to the car.
     His doctor told him to take his breathing treatments and call 911 if he needs to. She told me he is at the end and she wants me to be prepared. How do you prepare yourself for something like this? It hit him so fast and he went downhill so fast. Well, I just needed to vent. I'm just a very sad daughter who loves her daddy so much and hates to see him leave, Rita.

Donna K, June 29, 2002 - Hi, You are all in my prayers. Well, we had some bad news today. We went for blood work this morning and around 7:00 this evening a policeman comes to my door telling us to call the Dr. as soon as possible. The funny thing is that the doctor has our phone number. I called the doctor and are told to quit all meds - Lasix, zestril, and zaroxlyn - until Monday morning and then to go in for more blood work. His potassium is too high and he is dehydrated. I'm confussed! Any ideas?

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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