The paperwork never ends The Archives
Loved Ones - April, 2003 Archive Index

Susan B's 4-1 reply to Sandy's 3-31     knowing each person's role
Annie G's 4-2 reply to Sandy's 3-31     knowing each person's role
Joyce C's 4-2 reply to Sandy's 3-31     caregiving for a spouse
Anita 4-2     seek others' experiences regarding this
Donna H's 4-3 reply to Sandy's 3-31     caregiving for spouses
Kim 4-3     ICD anxiety and other problems
Jon's 4-3 reply to Kim's 4-3     ICD anxiety
Angie 4-5     I could really use some advice
Susan B's 4-7 reply to Angie's 4-5     our experience
Angie H's 4-9 reply to Susan B's 4-7     it is very rough
Susan B's 4-9 reply to Angie H's 4-9     our prayers are with you
Annie G's 4-9 reply to Angie H's 4-9     our experience and more
Pat Hammond's 4-11 reply to Annie G's 4-9     some questions
Angie H 4-12     Bob's getting better!
Angie H 4-14     seek experiences with Viagra
Anita S 4-14     prayer request
Annie G's 4-15 reply to Pat H's 4-11     more info, expectations
Anita S 4-21     update on Phil and more
Jan 4-21     I could sure use some advice
Susan B's 4-22 reply to Jan's 4-21     coping with caregiving tips
Annie G's 4-22 reply to Jan's 4-21     caregiving tips
Octavia 4-23     seek others in the same boat
Carla 4-24     update - some good news
Kelly M 4-29     I really need some help
Jan M's 4-29 reply to Kelly M's 4-29     our experience

Annie G's April 2 reply to Sandy's March 31, 2003 - Hi Sandy, I agree with Susan that different relationships have different ways of sharing responsibilities. Ask your husband if he wants you to make the appointments or ask him if you made the appointments, would he go? You're not his mother but sometimes people need mothering. Anne.

Joyce C's April 2 reply to Sandy's March 31, 2003 - Hi Sandy, I have been taking care of my husband's doctor appointments, fixing his meds, seeing to it that he takes them, and I go with him to every appointment. I feel that it is a small price to pay to be sure I have him with me for another 50 years. I think that when it come to health we have to throw what's fair out the window and do what is in our hearts to do. I can't make my husband do these things but thank goodness he will let me do it, and that is the bottom line. Good luck and I do know how you feel but just do the best you can. Joyce.

Anita, April 2, 2003 - Hi there, I am a daughter of a CHF patient (my dad) and I have been tearing my brain out trying to find someone with a success story or a solution to my dad's constant aweful side effects from the CHF itself, or the meds he has to take. He has his good days and bad days, but most of them are bad because he suffers from dizziness, fatigue, dry throat and just plain being sick and tired.
     To some of you, this probably sounds like something you've already seen, but to our family this is all new and we don't know if he's supposed to be having these symtoms or if there's a solution to this problem of his. Can anyone please write back with their story on how they and their loved one combat this? Is there anywhere we can turn for help with making my dad feel alive again and not half dead lying in his bed all day? Please help! Thanks so much, Nita.
Jon's note: It might help if you list his meds and doses, and any further symptoms or side effects

Donna H's April 3 reply to Sandy's March 31, 2003 - Hi, I have hesitated to reply to you because most days I feel like I don't have any answers for my situation, let alone any one else's! My husband is exactly the same age as yours and we have many of the same problems.
     I found out the first day he was diagnosed that getting him to the doctor was going to be difficult. He argued with the doctor when she told him he had to go to the hospital, he argued when she said he had to go in an ambulance, he argued when she said he had to have oxygen. It wasn't until after his first week in the hospital that he finally admitted that he needed to be there.
     Much of this disease is about denial, especially when someone is diagnosed at a young age. Because of that denial, doctor appointments are postponed or neglected, medication is missed, blood work doesn't seem important.
     What I have found that works for us - most of the time - is to make it a joint effort. I go with him to the doctor appointments so I make them when they are convenient for my schedule. When I hear what the doctor says, we can discuss it later. I usually even make notes because sometimes we don't hear the same thing! He has gotten very good at taking his meds and making sure he has sufficient on hand. I leave that to him but have made it as convenient as possible by having a place for him to store them and a weekly planner to hold them.
     Sometimes I worry that I am taking too much responsiblity but I know that if I were sick, he would do the same for me. Donna.

Kim, April 3, 2003 - Hi, My dad just had an Insync pacemaker/defibrillator implanted on 2/27. Since then, he has been hospitalized twice with CHF symptoms and a small amount of fluid. All tests and chest x-rays look good, like the implant is doing its job.
     If all of that is true, why is he feeling so bad and constantly asking for nitros for angina? Is he just having a slow recovery and adjustment? I also think he's having panic attacks. He is afraid of the defibrillator going off and the symptoms mirror CHF symptoms. The cardiologist has referred us to a neurologist whom we see him in 2 weeks. In addition to these anxious feelings, the last 3 weeks he is showing some cerebral dysfunction at times. Any insight, anyone? Kim.

Jon's April 3 reply to Kim's April 3, 2003 - Hi Kim, For starters, fear and anxiety regarding possible shocks is extremely common and a serious and well known problem. I'd ask around about a local support group as soon as possible. Jon.

Angie, April 5, 2003 - Hi, I am new to the board. My hubby Bob, was diagnosed in November with DCM, acid reflux, and elevated ferretin level. His cholesterol and trigylcerides are good after stopping all alcohol; he was a two-beer-a-day guy. He is being treated with 12.5mg Coreg twice a day, 5mg Vasotec twice a day, 2.5mg Zaroxolyn daily and 20 to 60mg Lasix a day depending on his weight. He is not on a potassium supplement. We know what to eat for that. He is on 2000mg sodium restriction and 2000cc fluid intake restriction.
     I am going to ask for repeat blood work Monday for everything. We are seeing the doctor Tuesday. Bob is so extremely tired and suffers from SOB and dizziness a lot. His EF is 30 to 35% by cath. Here are my questions.
     Do the tiredness and dizziness get better once you are on the meds for awhile? He has only been at this dose for a few weeks, slowly building them up since December. Do any of you have side effects of confusion and forgetfulness, etc? Bob does.
     Does anyone from the Chicago area have a really great doctor? We are going to Loyola for a second opinion April 30th. The depression is the hardest part for us both. This is going to be a long haul and that is hard to take. Any advice would be appreciated. Angie.

Susan B's April 7 reply to Angie's April 5, 2003 - Hello Angie, My husband has DCM too. He has good days and bad days. It is just part of the illness. He has been in treatment for 2 years. Has your husband been to cardiac rehab? It really helps. For my husband, it is doing the exercises that reduces his SOB and reduces his fatigue. He takes his meds and watchs his diet; pop is an ongoing issue.
     After 2 years of treatment, he gets dizzy when he moves too quickly. For example, jumping out of bed will likely make him black out. This is because his heart rate is slowed down so much that it takes time to get the blood moving. His pluse was at 50 beats per minute when he was taking 50mg of Coreg twice a day. He is now down to 25mg twice a day.
     He is SOB running up the stairs to to answer the phone. It has been worse lately because he has not been able to do his exercises due to gout attacks. Now that we have the gout under control his is exercising and his SOB will hopefully improve. We just discussed with his doctors and plan for him to do swimming exercises when his gout flares up. My husband had gout before the CHF and he had it under control, but Lasix has not helped the gout.
     We just had a long discussion about pacing his activities. He loves to push it and then he needs time to recover. Last year on vaction, he insisted on site-seeing 12 hours one day and then he would have to sleep an extra 8 hours the next day to make it up. One the third day he would insist on another 12 hour day, then he needed the extra sleep. He was wearing me out. We are leaving to go to visit my family this week and I told him that we was going to pace himself better. It is too hard on me to watch him do this to himself.
     For my husband, if he gets a little bit sick he goes downhill quickly. One minute he looks fine and feels fine, then if he catches a cold or the flu - look out, it is a trip to the ER. Reality check! The heart is weakened and it can be improved with meds and exercise but it is not up to doing what it did before. Illnesses and stress are hard on the heart.
     We plan one day at time, and I try not to get upset when the plans fall through. More than likely, it is me who tells him to rest. He will push it even when he can barely walk because of the gout. I hope this helps you. Good luck. You are in our prayers. Jon, thanks for everything. Susan B.

Angie H's April 9 reply to Susan B's April 7, 2003 - Hi, Thanks for replying, Susan. My hubby is only 42. He is going downhill. He has so much fatigue, complicated by insomnia, depression, dizziness, lightheadedness, and weakness. He was doing cardiac rehab but it would put him in bed for most of the day afterward. He is too sick right now to even attempt it.
     We went to the doctor's yesterday and he is sending us to his favorite Chicago cardiologist. The doctor was very concerned about Bob's extreme fatigue, third heart sound and SOB on slightest exertion. We did find that his potassium was very low so I am hoping that caused the third heart sound because I know that is not a good sign. Bob is so much worse than before he started all these meds. I am not sure if it is adjusting to the meds or worsening heart failure.
     I keep telling him and myself that this will get better but I am really not so sure of that any more. We're hanging in there. God is good and will work this out for our best. Angie.

Susan B's April 9 reply to Angie H's April 9, 2003 - Hi Angie, My husband is 47 years old and he has a 3rd heart sound too. He is doing fine now. Our prayers are with you. Susan B.

Annie G's April 9 reply to Angie H's April 9, 2003 - Hi Angie, My husband was 46 when diagnosed with an EF of 13%. He was on a 1500ml daily fluid restriction and 1500mg of sodium maximum day. We rarely hit 1500mg of sodium, trying to keep it closer to 1000mg initially.
     Your husband has all the symptoms mine had initially. Fatigue and dizziness were bad until his Coreg dose was stabilized. He felt worse every time they upped his dose. It wasn't until the doses stopped going up for about 3 to 4 weeks that he actually started to feel better. All he could do for months was a few minutes on a slow treadmill and some minor weights. Walking to the end of the road exhausted him.
     He has been back to work for almost 2 years now and is doing quiet well but it was pretty rough for the first 18 months. He still wears out early each evening, no dinners out where I live, but still a miracle from where he was 4-1/2 years ago. Read all of Jon's info on the other pages; you won't find a better place to get up to date, frank information. Good luck, Annie G.

Pat Hammond's April 11 reply to Annie G's April 9, 2003 - Hi, What dose is your husband on now? Does he take other meds as well? Is his company aware of his health problems?

Angie H, April 12, 2003 - Hi, Bob had a low potassium and I think that was a lot of the problem. He must have been pretty low because today when they called, they said he had "improved up to 3.1!" That's still low - yikes! I kept telling him he should be on prescription potassium. I am a nurse and he wouldn't listen to me. He could have had an arrhythmia. Hubbies - humph!
     Well, he has more energy now and less dizziness and fatigue. He's not running races but is spending less time in bed. He's still on 80 mEq of potassium for another 6 days and then will have another blood test. I will never let him override my good judgement again, that booger!
     Thanks for the prayers. God is the great physician! We are going to Alexian Brothers in Chicago May 2 for another opinion. Be well, Angie.

Angie H, April 14, 2003 - Hi, Viagra - it's not just to help men! My hubby got a prescription and now we are afraid to use it. The cardiac side effects listed scare us. Does anyone have any experience with this stuff? I need to know! Angie.

Anita S, April 14, 2003 - Hello, My husband Phil is having his EP study at eleven tomorrow at the Cincinnati University Hospital. He will be transferred to the VA Hospital afterwards. Please keep him in your thoughts and prayers. Thanks. Take care.

Annie G's April 15 reply to Pat H's April 11, 2003 - Hi Pat, He's on 25mg of Coreg twice a day, 0.25mg Digoxin daily, 20mg Lasix once or twice a day as needed (he rarely takes it anymore), 10mg Vasotec twice a day, 80mg CoQ10 twice a day, Lipitor, and a baby aspirin daily. He was completely off work for 2 years and has been back to work for 2 years full-time now.
     Yes, his employer was aware of his condition but he has no interest in them being aware of anything but his at work performance. Their disability plan does not appeal to him and he hopes he can make it to early retirement. His last EF measurement was up to 35%, so I believe it's a reasonable expectation since he is 50 now, or at least worth keeping as a goal.
     I believe that his early start on both Coreg and CoQ10 has been a big contributor to his significant and unexpected improvement. I also believe that his stopping alcohol of any kind and his low-sodium diet really help keep him well. I still see people coming into the hospital for repeated visits with fluid problems because they won't follow a low sodium diet. At least I believe it's one of the bigger contributers to their readmissions.
     Your best way to cope with CHF is knowledge, so keep reading this site! Good luck.

Anita S, April 21, 2003 - Hello, Thanks to all of you for your prayers for Phil. He had his EP study done on Monday and his heart stopped so he had to be shocked back. Needless to say, he now has the pacemaker/defibrillator combo. We will see the doctor Tuesday for a follow-up on the surgery and will finally get to ask more questions on exactly what happened.
     I did get to talk to the doctor some after the EP study, and thanks to the information at, the doctor was impressed that at least I knew what he was talking about. I'll keep you posted on how Phil is doing and thanks again for your prayers and thoughts. Take care.

Jan, April 21, 2003 - Hi all, I just came upon a link to this site and haven't explored any more than reading the most recent posts yet. I haven't even had a chance to have a good cry yet to release the tension, fatigue, and emotions of the weekend's events. So if my questions and concerns have already been addressed elsewhere, I apologize.
     My 82-year-old mother was admitted to the hospital through the Emergency Room over the weekend, with a new diagnosis of CHF. I am just now getting the opportunity to do some online searching for info and I am her at-home caregiver. She was told today that she may be able to come home tomorrow. I'm sure I will have many questions for you as time goes on, but I don't even know quite what to ask at this point.
     I think my most immediate concern at this time is that her cardiologist has not been in to see her at all. Granted, there were other problems which occurred at the same time (her blood pressure and blood sugar both went up and her liver enzymes were slightly elevated) but only her primary care physician has actually examined and met with her. Can any of you tell me if this is normal?
     It is my understanding that the cardiologist was given her EKG and ultrasound to read but I have no idea whether these docs are in any communication with each other. In addition to this, there have also been no phone calls to or meetings with the family concerning her diagnosis, treatment, prognosis, or after-care. I guess "the family" really means me, since neither my 83-year-old father nor my brother, who lives several hundred miles away, is of any help. In fact, both are quite the opposite of helpful.
     I've had my concerns over the past 10 years concerning this PCP doc. One example of several I could give is when he diagnosed her with Type II diabetes, he gave her a prescription for Glynase, told her to lose weight, and sent her on her way with no instructions on what to do to lose weight, no instructions on diabetic meal planning, no referral to a dietician, nothing. I'm wondering if you might know and can tell me what exactly I should be asking or demanding. Please don't suggest that I let my mother take care of this on her own because at 82 she relies on me to ask the questions, explain things to her and to the rest of the family, and help her keep the instructions straight.
     I am feeling very overwhelmed by this new development in her health status, not to mention scared at the prospect that this may be the beginning of the end. Other sites that I've visited say that 1/2 to 2/3 of people with CHF die within 5 years of diagnosis. I'm doing my best to be realistic while also remaining as positive as I can, but info like that really makes the staying positive part more than a little bit difficult.
     Needless to say, my anxiety level is rather high. So, while right now I will most appreciate your addressing the immediate concerns and questions detailed above, I will also be very grateful for any advice, suggestions, information, or encouragement you all might offer this newbie as I make my way through this. Thanks!

Susan B's April 22 reply to Jan's April 21, 2003 - Hello Jan, Welcome to the caregivers' board. You have just taken the first steps on the long road of understanding CHF. Please stop a moment and take a deep breath before going on; it will make you feel better. Jon has so much information here that you will need to take some time to read it and understand it. Start with The Manual. Please read it; you will be glad you did.
     Now is the time to help your mother take charge of her medical care, starting with getting a PCP that will spend time explaining her illnesses and the treatment plan. Doctors are very busy, but you and your mother must have a doctor who matches your mother's needs. You also need to get a cardiologist, who specializes in CHF. Jon has a list of doctors on this site. Ask here if you need another name. Interview the doctors to see if you are going to be able to work with them and if they are going to be able to work with you and your mother. Your mother's life and quality of life depend on it.
     Now it is normal for people with CHF to have good days and bad days. It is also normal for their family to be afraid. Jon's link in your last post to the study on the death rate will help you understand where those numbers come from, but understand people die from CHF every day. On the other hand, people live for years with it.
     When my husband first was diagnosed with CHF, the hospital check-out sheet stated that he needed to talk about his diet. I demanded that the hospital follow through before he checked out. If the doctor wanted it, then we were waiting around for it. We had to wait for over 1-1/2 hours. Your mother might be in the same boat. Read everything the hospital gives you.
     Now for the bad news. You must take charge. It you want your mother to have her best chances and highest quality of life, you will have to fight for it even with the best doctors. Insist on everything being explained until you and your mother understand what it is that needs to be done. If you don't understand, you must say so and ask questions. People must take an active role in health care or you will not be able to have the quality of life that you are looking for. I have other family members who have not taken the steps I have with my husband, and their quality of life is much different than my husband's. They refuse to do the work necessary to ask questions and be active in their treatment.
     The good news is that you are not alone. Everyone here will help you even if all we can do is pray for your family. Knowledge is power and if you take the time to read The Manual and the rest of this site you will be well armed to fight for your mother.
     Doctors are not gods, and we must stop treating them as such and start demanding that they work with us on our treatment. You need to look at the doctor-patient relationship as a partnership. Doctors have a lot of knowledge, but everything changes so fast today that you may learn more here than your doctor knows about new treatments.
     I hope this helps you. Our prayers are with you and your family. I know that helps. Jon has done an amazing job with this site. Good luck, Susan B.

Annie G's April 22 reply to Jan's April 21, 2003 - Hi Jan, Everything that Susan wrote was bang-on. One thing I would add would be to write up something and have your mom sign it to permit the doctors and any other healthcare people to speak to you regarding your mother. There are stricter confidentiality guidelines being adopted all over (due to HIPPA) that could make discussing your mom's care difficult.
     Speak to a patient representative at the hospital. There may be some type of blanket form already available. Also see if your mom would agree to a Durable Power of Attorney for health care decisions to designate you to be the one to speak for your mom if she were unable to do so for herself. If you are the one who is going to get most of the info and interpret for her, you should probably be the one who has that role. Good luck. Follow Susan's advise and read Jon's many pages. Annie G.

Octavia, April 23, 2003 - Hi, I am realatively new to the caregiver game. My mother had a stroke almost 2 years ago which led to her diagnoses of CHF, cardiomyopathy, cardiomegaly, multiple myocardial infarctions, and the latest of diabetes. I have a lot on my hands as you can see. I'm not complaining, I just wonder if anyone else could use someone to talk to sometimes.
     I am also a full-time college student and the only one of my siblings who is close enough or willing enough to take care of her. Does anyone else know the feeling? I am more than happy to talk to anyone.

Carla, April 24, 2003 - Hi, Frank had his surgery for the ICD and it actually took 2 surgeries to get it done and spanned 2 months. He definitely is feeling better. He was off Coumadin (warfarin) for 2 months and began taking CoQ10 and feels like he really benefits from it.
     His cardiologist wants him back on Coumadin but we have heard that taking Coumadin and CoQ10 is not a good combination. Does any one have any information why it is not a good mix? The doctors finally listened and took him off metformin today. More good news: I finally feel as if all of his doctors are communicating with each other and I have established solid communications with all of them. I even see the evidence that his PCP is keeping up to date with CHF treatments.

Kelly M, April 29, 2003 - Hi, My father is 64 years old. He was diagnosed with CHF about 2 years ago. He has had numerous heart attacks over the past 12 years. He had a quadruple bypass in 1991, several angioplasty procedures and a permanent stent as well. He is about 100 lbs overweight, just quit smoking 2 months ago, and has type II diabetes. He also has a-fib.
     He was hospitalized in January with fluid on his heart and needed IV therapy. He was admitted again this February with fluid again. They decided to put in a pacemaker, which they did but it pulled it out 2 days later. They implanted an ICD when they detected tachycardia lasting 3 seconds. I hope my memory is up to par on all this.
     Anyway, he is still in a-fib and complains about the ICD being very uncomfortable and hurting. He is taking 5mg Glyburide twice a day, 80mg furosemide daily, 50mg metoprolol twice a day, one baby aspirin daily, 20 mEq K-Dur twice a day, 600mg Gemfibrozil twice a day, 150mg Ranitidine twice a day, 10mg Zestril daily, 0.125mg Lanoxin dailyy, 40mg Zocor daily, 4mg Coumadin daily, and 100mg Zoloft dailyy.
     He has a history of high blood pressure but seems to be on an even keel lately. My dad lives in Louisiana and I live in Houston so he is about 5 hours from me. He does not watch his blood sugar or for that matter even check it, or his weight or his blood pressure. His diet is terrible, to say the least. Last week on Easter Sunday my mother drove to his home and got him and brought him to Houston. He was having CHF symptoms, edema, poor vision, etc. She checked his blood sugar and pressure and both were within proper range. The problem was that he was having hallucinations, very visible ones, and it scared him and me.
     He was admitted into the hospital that night and they started IV diuretics and numerous psychiatric doctor visits. He was terribly exhausted from CHF symptoms and was not sleeping well. Did I mention he has sleep apnea and sleeps with a bipap machine? Well, they did an EKG in the ER and confirmed that he was in heart failure. They also stated he did not have a stroke of any kind.
     He was discharged yesterday with no clear answer on what caused his hallucinations. I'm worried. For the most part in the last 4 months he has been in poor health. His symptons have progressed terribly. He cannot walk 10 feet without being short of breath. I realize after reading this site that being SOB is part of CHF but his quality of life is terrible. He is SOB even at rest now and this concerns me. His doctor is just a cardiologist, not a CHF specialist. I just learned of the specialist concept for CHF from this site, which I found by sheer accident, but it's a godsend.
     I'm very concerned about my dad. Has anyone heard of hallucinations possibly as a result of some of the meds or maybe something to do with lack of sleep or quality of sleep? What about a CHF specialist at the Texas Heart Institute in Houston's Med Center?

Jan M's April 29 reply to Kelly M's April 29, 2003 - Hi Kelly, Your story brought back memories to me. At 46 years of age, my husband was diagnosed with CHF. It took a long time to find out what was wrong with him because he also has lung problems and his pulmonologist thought is was part that and part sleep apnea. He sent him to a sleep clinic to confirm and they said he had a severe case.
     All this time, no one recognized the symptoms of heart failure. He was so SOB and he could not walk a few feet without stopping. He would fall asleep sitting up. He could not lie down. He hallicinated constantly. He thought there were things in front of his hands and he would try to grab them. His dreams were so vivid, his doctor told him he was having night terrors.
     He also uses a bipap, but I really believe the heart failure was a major cause. He went into the hospital and they drained 36 pounds from him and installed an ICD. That was a year ago and after controlling his CHF symptoms with meds, he seems to be doing quite well. He was SOB even at rest at first as well. When diagnosed, he was class 4.
     Much of that is changed now with proper diet, meds, limited liquids, and exercise. Yes, the CHF specialist is sooooo important! I would make it a priority to find one. I credit his doc with saving his life. Hopefully, your dad is feeling much better now. Sometimes compliance with the bipap is difficult too.

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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