The paperwork never ends The Archives
Loved Ones - June, 2000 Archive Index

Ellen Smith 6-1     need advice - very frustrated
Jon's 6-1 reply to Ellen Smith's 6-1     feeling better & getting proper care
Bill D's 6-1 reply to Judy H's 5-31     adapting to Coreg
Ann Marie K 6-1     update on my mom & more
Annie G's 6-1 reply to Joan S' 5-30     some thoughts on Coreg adjustment
Sherry 6-1     my mom is getting worse, update on Greg
M J Strong 6-2     seek diet information
Janet L's 6-3 reply to Ellen Smith's 6-1     fatigue & SOB, understanding what it's like
Darlinda 6-3     thank you all
Ellen S 6-3     thank you, seek CHF doc in Chicago area
Lora C 6-3     my dad died
Mary Ann Dawson 6-3     what should I expect from class 4 CHF?
Dega 6-3     will Coreg help CHF? appetite & more
Karen D's 6-3 reply to Dega's 6-3     Coreg and CHFers
Carrie Burr 6-4     worried about my dad, have questions
Dega 6-5     can Coreg help my husband?
Jon's 6-5 reply to Dega's 6-5     I think so & more
Mary 6-6     is the end near?
Betty 6-7     thank you all & more
Peggy 6-7     update on dad - good news! & more
Joan S' 6-7 reply to Annie G's 6-1     meds questions, thanks & more
Todd 6-8     heart resynchronization therapy
Jon's 6-8 reply to Todd's 6-8     heart resynchronization therapy
Ann Marie K 6-9     update on mom - dialysis
Phyllis J 6-9     now I know about end-stage CHF - my husband died & more
Cheryl 6-11     questions about Coreg & dose versus how you feel
Carrie B's 6-11 reply to Joan S' 6-7     fatigue, CHF, meds & more
Susan N 6-11     seek CHF doc in Fort Worth, Texas area - does anyone go to Baylor?
Jon 6-12     may be gone for a few days
Janet L's 6-12 reply to Cheryl's 6-11     low BP & heart meds, venting & more
Joan S' 6-12 reply to Carrie B's 6-11     meds, fatigue & numbers - what's up?
Jon's 6-12 reply to Joan S' 6-12     meds, fatigue & numbers
Pam C 6-12     intro, seek CHF specialist in Chicago area
Mary 6-12     worried about my dad
Cheryl B 6-13     mitral stenosis and CHF questions
Todd's 6-14 reply to Pam C's 6-12     diet, exercise, Mayo Clinic & more
Pat 6-14     what will help me sleep? stressssed out!
Laurie 6-14     need some advice
Kathy 6-15     what about loved one's anger
Darlene 6-15     seek advice about dad's symptoms & meds
Pam C 6-15     seek advice about coping with mom's illness & more
Judy 6-15     husband's ICD prevents driving - depressing, any advice?
Sherry 6-15     good news update on mom & Greg!
Jon's 6-15 reply to Laurie's 6-14     finding CHF info
Bev B 6-17     seek right-sided heart failure info
Jon's 6-17 reply to Bev B's 6-17     here's a small start
Howard M 6-17     pain in leg long after bypass surgery
Carrie's 6-17 reply to Mary's 6-12     coping with dad's illness & more
Edie J 6-17     vomiting - can this be from meds?
Jon's 6-17 reply to Carrie's 6-17     cardiac cachexia or wasting
Ann Marie K 6-17     we must not hesitate to speak up
Dega 6-18     update on my husband
Jon's 6-18 reply to Dega's 6-18     better safe than sorry
Carrie's 6-19 reply to Ann Marie K's 6-17     how does dialysis works for her CHF?
Annie G's 6-19 reply to Carrie's 6-19     how and why dialysis works
Kat R 6-20     Aldactone & potassium questions
Janet L's 6-20 reply to Kat R's 6-20     meds & potassium levels
Michele's 6-20 reply to Mary's 6-12     and also to Kathy, June 15
Cheryl 6-20     how do we know if it's to the ER or take Lasix?
Dega 6-22     Coreg for severe CHF question
Janet L's 6-22 reply to Cheryl's 6-20     when to go to the ER?
Gus R's 6-22 reply to Cheryl's 6-20     when to go to the ER?
Jon's 6-22 reply to Cheryl's 6-20     when to go to the ER?
Jon's 6-22 reply to Dega's 6-22     Coreg for severe CHF
Rebecca 6-22     can a CHFer's gout be controlled?
Linda 6-22     seek Dressler's Syndrome info & support
Mary 6-22     mother in law update & more
Frank S' 6-22 reply to Janet L's 6-22     when to call the paramedics?
Cheryl T 6-22     questions - slow heart rate & Coreg dose
Judy 6-22     our ICD experience & more
Jon's 6-22 reply to Judy's 6-22     half-empty or half-full?
Bill D's 6-22 reply to Jon's 6-22     to call 911 or go to the ER?
Wendy 6-24     cardiomyopathy from Lyme Disease & more
Gus R's 6-24 reply to Rebecca's 6-22     gout and joint pain, & more
Rebecca's 6-25 reply to Gus R's 6-24     gout, doctors, thanks & more
Dega 6-27     questions - feelings of fullness, chest tightness
Jon's 6-27 reply to Dega's 6-27     feelings of fullness, chest tightness
Sherry 6-27     updates on Greg & mom - good news
Jon's 6-27 reply to Sherry's 6-27     older CHFers needing new hearts
Virginia R's 6-27 reply to Rita C's 5-27     Fort Worth CHF specialist
Virginia R 6-27     update on dad, questions about persantine test
Kathryn 6-27     how do I best help my son, sleep versus work & more
Phyllis J 6-27     grief has delayed my response
Kat R 6-27     questions about foods & Aldactone
Nancy O 6-27     intro, my dad has CHF
Cheryl B 6-28     my mom suffers, what to do now?
Jon's 6-28 reply to Cheryl B's 6-28     please discuss inotropes with her doctor
Dega's 6-28 reply to Jon's 6-27     more info on my husband, Coreg questions
Jon's 6-28 reply to Dega's 6-28     Coreg & more
Dega's 6-28 reply to Jon's 6-28     for what ir's worth
Jon's 6-28 reply to Dega's 6-28     for what it's worth
Kat R 6-29     potassium & foods web site
Dega's 6-30 reply to Cheryl T's 6-22     fatigue, Coreg & more
Jon's 6-30 reply to Dega's 6-30     obesity means other risk factors

Ellen Smith, June 1, 2000 - Hi Jon, This is such a wonderful site, thank you so much. I read the posts often but do not post anything myself very often. My 47 year old husband was diagnosed with CHF about 2 years ago. He also has CAD and ICM. His EF is 25%. He takes Vasotec, Lanoxin, prilosec, folic acid, Zocor, Coumadin, potassium, wellbutrin, a multiple vitamin, magnesium and 120mg Lasix twice a day. Also he takes zaroxolyn twice a week.
     He has had a problem sticking to his diet and fluid restriction. He's allowed 1½ liters of fluid a day and has a real problem with it. He does watch his sodium but sometimes goes overboard. Three weeks ago his shortness of breath suddenly became a lot worse. After taking extra Lasix for a week, we made a visit to our local ER. His SOB was so bad that whenever he would stand up from sitting, he was out of breath. They took an x-ray at the hospital and said his lungs were clear and there was no fluid around his heart. He was given some IV Lasix and discharged within an hour. The next day he was worse and just feeling miserable.
     He has a local cardiologist and is also a patient at a heart failure clinic about 40 miles away. I called our local doc and was given the run around, with the nurse finally saying that he could come see the doctor next week. I then took him the following day to the ER at the hospital 40 miles away. The ER doctor thought that Wayne should be admitted and his condition reevaluated but then they called my husband's CHF doctor and she told the ER doctor that Wayne always does this, just give him some Lasix and send him home, I was dumbfounded to say the least.
     The last time we had to go to the ER was over a year ago. She did agree to admit him but only overnight and he was pumped full of Lasix and sent home the next day. He had a regular appointment at the clinic last Friday, 5 days after his hospital stay. Wayne is seen by a team of CHF doctors, so each time he has a appointment he is usually seen by a different doctor of the team. The one we saw said his blood pressure was very low - 70/42. Because of this, he thought maybe Wayne had lost too much fluid. I voiced my displeasure with the comment that was made to the ER doctor. This is so frustrating.
     It was recommended that Wayne take his zaroxolyn 3 times a week instead of twice. Now this doctor is saying because it appears that he has lost too much, just take it as usual twice a week. He also said he thought much of the SOB problem is from Wayne being overweight and out of shape. He is about 50 lbs overweight. Over the weekend, Wayne felt okay, except he did complain about having chills and his blood pressure was running a lot lower that usual. Since being in the hospital, he is trying to stick to the diet and fluid restriction. I come home yesterday from work to find him SOB again just as bad as he was 2 weeks ago but at least his BP is higher. He can't take 2 steps without being out of breath.
     I called the heart failure clinic last night and got a call back from his doctor, the one the ER doctor talked to. She wouldn't even hear me out. She kept interrupting me and all she could recommend was for Wayne to take an extra zaroxolyn. We need help! I cannot believe that Wayne would get this short of breath from being overweight. I know this is quite lengthy but we just don't know what to do. Does anyone have any suggestions? Do you think that we are not looking at this realistically? Can SOB be this bad only occasionally? Thanks for reading, and any ideas or suggestions would be greatly appreciated.

Jon's June 1 reply to Ellen Smith's June 1, 2000 - Hi Ellen, Being overweight and very out of shape from lack of exercise can severely increase SOB episodes and cause lots of additional CHF-type problems. Exercise is critical to feeling good and living longer with CHF.
     It also sounds like your husband is cheating waaaay too much on his dietary restrictions. These restrictions are not a joke. They are not optional. If he does not follow them, he will continue to have problems of his own design. Period.
     With that said, your doctors are jerks. Get a new CHF specialist somehow, please. Cardiologists tend to blow off our feeling of SOB and "fullness" if they cannot find any retained fluid but they are wrong! Why? Because it may indicate a reduced cardiac output rather than retained fluid! I have experienced this sequence of events myself. The CHF doc on call blew me off so I got hold of my doc while he was off duty (it's handy being so familar with him) and he ordered a quick echo, which showed drastically reduced heart output for no apparent reason. It was so reduced that we had to discuss heart transplant that day. Get a new doc. Doctors should listen without interruption and even in problem patients, they should take serious notice of everything the patient says.
     So my view is that Wayne is going to have to get far more serious about his own care and he also needs to find a new CHF doctor. Jon.

Bill D's June 1 reply to Judy H's May 31, 2000 - Hi Judy, Patients that have low blood pressure take a long time to adjust to Coreg. Coreg lowers BP and heart rate. Do you take his blood pressure and keep a chart? It will help when you see his BP starts upward. Then maybe he can assimilate a larger dose. I had no problem with Coreg and I took it for years. Most patients get lightheaded when their dose is too high. Shortness of breath usually isn't the problem. Bill D.

Ann Marie K, June 1, 2000 - Hi, I haven't posted in awhile about my 86 year old mother who has CHF, diabetes, renal insufficiency and COPD. Last September she was critical and they did kidney dialysis to save her. She responded well and came home in early November. She had been doing well until about 3 weeks ago. The fluid is back and the drugs are not working so she went into the hospital yesterday. Unfortunately, today she had problems breathing and is on a respirator. She gave the doctor permission to do this. The doctor is recommending dialysis to remove the fluid. I have given permission. I hope that this information will help someone with similar problems. My Mom is as sharp as a 35 year old and has decided to give CHF a run for its money again. I am very proud of her and I know that she is always in God's hands. Prayer works and she is proof of that.

Annie G's June 1 reply to Joan S' May 30, 2000 - Hi Joan, When my husband was started on Coreg his EF was 13%. He was started v-e-r-r-y slowly at 3.25mg once a day, then after 3 weeks to 3.25mg twice a day, then 6.5mg in the morning and 3.25mg in the evening. His increases were always every 3 weeks and only a 3.25mg increase of morning or evening dose until he got to 12.5mg twice a day and then they went to 25mg twice a day over 6 weeks. We found that whenever he increased just by 3.25mg once a day he would feel like "he'd been run over by a truck" for 3-6 days. He felt much worse. His fatigue was severe and he felt as bad as when he had been first diagnosed but the feeling would go away after 3-6 days. He always dreaded the increase but stuck with it. I'm sure it's one of the things that has made a huge difference for him. I know that the recommended increases in the USA are done much quicker and we asked our doctors about it. They felt that the slower increases increased the number of their patients who were able to tolerate it. It's a thought for people who want to give it a go but just can't tolerate the quick increases due to the severity of the side effects. Good luck.

Sherry, June 1, 2000 - Hi everyone, I am writing right now to say how scared and grateful I am again. My mother was admitted yesterday again for heart failure. We had just recently started her on a new dose of Lasix: 120mg twice a day. I think we waited too long because she started accumulating fluid really fast this time. She is getting worse and worse, and I am so unbelievably scared. She feels better today but it is so apparent that she is getting worse and worse. She will probably come home again this time but I had to sign another DNR yesterday.
     Greg, who received an LVAD last week, had some complications afterwards but is doing better now. He is on the fourth floor and my mom is on the sixth floor so I alternate. While I was visiting Greg yesterday in the surgical ICU, I saw 2 of his friends who had been waiting for hearts longer than he has. They are both doing well with their new hearts so that made me happy. I am extremely stressed out these days but I just pray for the strength to handle whatever G-d has in store for my mom. Even though I haven't corresponded with anyone directly, I wish you all the best. Thanks for listening and relating. It really helps.

M J Strong, June 2, 2000 - Hi, My husband has recently been put on Coumadin and was told to stay away from vitamin K-rich foods. He also needs to lose weight. Does anyone have a resource for a diet that stays away from the green leafy vegs and still helps a perosn lose weight? I have only found this site tonight and am more than thrilled to find a support group! It's very late tonight but I will write more tomorrow. Thank you for the site!

Janet L's June 3 reply to Ellen Smith's June 1, 2000 - Hi Ellen, I don't have any medical suggestions but I do empathize with your situation. My husband has serious SOB also, but they say there is no fluid build up to explain it. Jon's reply was the first time I've heard that SOB could possibly be due to reduced cardiac output. Dan regularly has chest pain (sometimes an ache), dizziness, weakness, shortness of breath, etc. I regularly wonder whether we should be heading to the ER but Dan says no. Other times he can mow (on the riding mower) for several hours and be tired but seem okay, or go to an all day shooting match. So it feels like a roller coaster to me.
     It's hard to understand how stamina can differ so greatly from one minute to the next. I don't think friends can understand. It seems like they have trouble believing the bad times can be so bad when he still does as much as he does. This message board is a real comfort because other people know what it's like. I agree with Jon that you need to find another doctor, preferably not a team where there is no consistency in who he sees. I will keep you in my prayers both for the medical situation of your husband and for you and the emotional strain that comes from watching him go through this. That, I understand competely.

Darlinda, June 3, 2000 - Hi, I wanted to thank Bill and the others who have helped me with my situation with my father. Most of my questions have been answered by the caring people on this site. I am seeing an attorney on Friday and then I will see. The hospital still won't release his records but that is just one more battle. Thank all of you folks again, and God bless.

Ellen S, June 3, 2000 - Thanks Jon, for replying to my post. Wayne knows he needs to exercise and we are awaiting results from a stress test to get the okay from the doctor. Wayne wants to join a fitness club but the doctor recommends cardiac rehab, which I think would be the best choice to begin with. He is starting to take his condition a lot more seriously and is cutting back as much as he can. I really hope he sticks with it because it is so hard to see someone you love not take care of themself. Even though I know he hasn't helped his condition as much as he should, I feel so helpless when he is really feeling miserable and we get played off by the doctors. We have talked about getting a new doctor but are not quite sure which one to pick. If anyone knows of a good CHF doctor in NW Indiana or Chicago, please let me know. Thanks again.

Lora C, June 3, 2000 - Hello everyone, I'm sorry to report that my father - my friend - passed away tonight. He passed quietly in his sleep. I just wanted to thank everyone here who has helped me over the last few days, as his life wound down. This is one amazing group of people. I wish you all well.

Mary Ann Dawson, June 3, 2000 - Hi, My 94 year old mother has CHF and is becoming angry. She is in an assisted living center now, but had been living with us for 2 years. I think she must be getting to class 4 CHF. She is very tired all the time and it's such an effort for her to do much of anything. I can't find out what to expect about this stage of the disease or if there are any support groups around here. Where could I go to find out?

Dega, June 3, 2000 - Hi, My husband recently got on the drug Coreg. He has heart failure, probably in between class 3 and class 4. He has had 3 heart attacks, the last one in May. He had a quadruple bypass and and only 3 new arteries are working now. The Coreg is supposed to get into his body and possibly start making him feel better. Before he went on this drug he had become weaker and I noticed he needed to rest more. Going up stairs has become a real chore. Now mind you, this is before starting Coreg. The doctor says he has extreme heart failure. Does anyone know if this drug will help a person in this condition? If he starts losing weight because he is extremely over weight at 6' 2"and 270 lbs, I think it means he is getting worse because I notice his appetite has fallen. Can anyone help with some knowledge? Thank you, Dega.

Karen D's June 3 reply to Dega's June 3, 2000 - Hi Dega, My husband has been on Coreg for about 18 months now and it has really worked for him. When he was diagnosed, he was in the end-stage of cardiomyopathy and was considered to be class 4, with an EF of 12-15%. Now he has an EF of 40%, and is able to walk for 30 minutes each day and doesn't get nearly as tired. Some people feel worse before they feel better when they are first put on Coreg. Bill didn't have any bad effects at all. Hopefully that will be the case with your husband. Karen.

Carrie Burr, June 4, 2000 - Hi everyone, I am Carrie and my dad is Stuart, better known as Stu. He is 83 years old and has CHF. I don't know a lot about CHF but I am learning. He is in a nursing home now, which makes me really sad. I've asked him time after time to come home with us, but he doesn't want to because our town is about an hour from his and he'd miss it too much. Well, anyway, yesterday dad told me he has an oxygen tank now, to use as needed. This is a new thing. Maybe it means his CHF is getting worse? I'm really scared. He is also coughing a lot. He calls them "coughing spells" and is coughing up a sort of brownish or grayish sputum (sorry to be so graphic) and this is scaring me too. I think his lungs are filling up.
     Still, he is really pretty active. He walks with a cane and has a good outlook usually. He has a good circle of people at the nursing home and we visit him a lot. It isn't a cadillac nursing home but it's pretty good. I would be fooling myself if I said his condition wasn't progressing. I'm just scared of it. He is really skinny. He used to weigh about 150 and now he weighs in at about 118. We don't know why this is! He eats well at the nursing home.
     Just before the nursing home, he did have pneumonia and a slight stroke. It seems that he lost so much weight during this time and directly afterwards. He also has memory loss. His meds include digoxin, Coumadin, Lasix, trental for circulation in his legs, and wellbutrin for depression. He has told me and his doc that he's noticing a marked decrease in his energy level and he thinks it's his meds. He really doesn't like them, especially the most recent one: trental.
     I know I have written a lot, but I have alot on my mind and heart. I'm scared, mostly. Thanks for reading my long letter. If anyone wants to share or comment, I would really be grateful. Love, Carrie.

Dega, June 5, 2000 - Hi, I forgot to mention that my husband's heart is working at 35% and he suffers from "severe" heart disease. He has aneurysms throughout his heart. He is now on Coreg going on 2 weeks. I think it is at a 3.25mg dose and it hit him like a ton of bricks. He still gets very tired and nauseated, and has burning in his stomach. The doctor told him to hang in there. He also said that this was the only thing that he could do for him at this time - putting him on Coreg, that is. Long-term, does anyone know if this drug can work for anyone with this condition, or is his heart too far gone? He is only 52 years old with 3 heart attacks and a quadruple bypass.

Jons' June 5 reply to Dega's June 5, 2000 - Hi Dega, I am assuming that 35% is his actual EF. You should make sure with his doctor that this is what he means. My own EF was 13% when I was diagnosed over 5 years ago and I'm sitting here typing. :-) Be realistic but remember that includes hope! Coreg should help him by raising his "numbers." It may also make him feel better after he adjusts to it although that remains to be seen. Jon.

Mary, June 6, 2000 - Hi, I have been caring for my 87 year old mother-in-law with CHF for 2 years. Yesterday, she was hospitalized for the first time. She cannot seem to eat solid food without choking. Is this going to prevent her from eating? The doctor advised us to sign a DNR. We already have a health care proxy. Should I start to prepare for the end?

Betty, June 7, 2000 - Hi, I just want to thank everyone involved in this forum. My husband is presently being evaluated for a heart transplant and I have found it extremely helpful to be able to read answers to some of our questions. We have lived with CHF for over 20 years. The doctors recommended the transplant 10 years ago but God was on our side and gave us 10 wonderful, if modified, years to raise our family and gain 6 great grandchildren. I only hope we have not waited too long before seeking the transplant. He has developed secondary pulmonary hypertension and has to be closely monitored while receiving IV Primacor. We are praying daily for acceptance to the transplant program. Again, thanks for all your posts and replies, they have been very helpful.

Peggy, June 7, 2000 - Hi, We received good news from Shands on Monday. My Dad is doing so well that he doesn't even qualify for the transplant list at this time. The doctor told him to keep to his diet, exercise and medications, and he would see him back at the Heart Failure Clinic in 4 months. Needless to say, we were all thrilled with this news. Dad is also feeling very well; even his "bad" days aren't too terrible. He does say that if he misses one of his exercise days, he feels worse, so he tries to stick to his schedule or at least to make up the day he missed the next day. I must say that Dad's disease has made me think of my own health. I went and had a lipid screening done and I have my Dad's problem with triglycerides and was put on a diet and exercise program. Hopefully, I'm starting early enough to avoid some of his problems. Thanks for this site, Jon. The Manual has been wonderful.

Joan S' June 7 reply to Annie G's June 1, 2000 - Hi, Thanks so much for the encouragement regarding the benefits of Coreg. My husband is now on a sort of cocktail of Lasix, digoxin, Ramipril, and Acecol. We are wondering if maybe some of these other drugs could be causing the extreme tiredness. It seems like he has gotten worse since adding the diuretic but that doesn't make any sense to me. Thank you all, Joan S.

Todd, June 8, 2000 - Hi, Has anyone heard of a therapy called "Heart Synchronization Therapy?" Is this the same as biventicular pacing? I read an article on this about a test being run across the country with 300 patients. I am curious if anyone has heard anything of its results. The article said that it is not a typical pacemaker in that it makes the chambers of the heart pump together by delivering electrical impulses to the muscular organ. I asked a question a few months back on biventricular pacing but am not sure if this is the same thing. Thank you, Todd.

Jon's June 8 reply to Todd's June 8, 2000 - Hi Todd, See this page. It is indeed a form of "turbocharged" bi-ventricular pacing for CHF. It will only benefit some CHFers since your heart's chambers must be beating in at least a slightly uncoordinated fashion for it to improve your heart function. It requires 3 leads, to coordinate the atria' and the ventricles' pumping, instead of just the ventricles. It has been in trials since 1995 but only this year has gained the funding to really get going. You can write Medtronic or Guidant for more info although I am not sure they will do anything but give you the names of participating centers in the current and upcoming trials. Jon.

Ann Marie K, June 9, 2000 - Hi everyone, I am updating my 86 year old Mom's progress. They removed her respirator and started doing dialysis. They removed 8 liters of fluid in 2 sessions. Her lungs were full of fluid and the drugs had stopped working; her kidneys were failing. I realize this is very drastic. It was her decision and she is very clear thinking. I have seen previous people mention kidney dialysis and the fear of it. My Mom is very fragile and the experience of it is uncomfortable but not intolerable. I think the hardest part is staying still for 3 to 4 hours. I do think that if someone wants to try and extend their life, dialysis should be considered. The day she stopped breathing, she had a small heart attack and about 3 days ago she went into a-fib, which is being controlled with medicine. I had nurses tell me that my Mom proves that God is in control, not us. Gee, tell me something I didn't know. Blessings to all.

Phyllis J, June 9, 2000 - Hi, It's been awhile since I have posted anything because my husband has been so sick. Sadly, he passed away last Tuesday. My last post asked for help from anyone who could tell me about the final stages of CHF. I didn't hear from anyone and realized that probably none of you really knew the answer to my question because you haven't gone through it. Now I have the answer to my own question. I will not be visiting the site anymore but if anyone wants some information about the final stages, please feel free to e-mail me. Again Jon, thank you for this site. It really was a great help to me during this awful ordeal.

Cheryl, June 11, 2000 - Hi, I have a question about Coreg. My husband Jim is up to 6.25mg twice a day. His BP is about 96/60 or so each day. He is tired all the time and is sleeping about 12 hours a day. If not at work, he's asleep. How can this be a good thing? Most days, h eis very gray and sick looking. If he can't tolerate Coreg enough to increase the dose to a therapeutic level, will it help at all? If you feel this bad, what's the point of living longer anyhow? We are just sooooooooo frustrated. Thanks for letting me vent. All input is appreciated. They didn't increase his dose this week. The doctor told him to monitor his BP and call back next week. Will too-low BP harm him?

Carrie B's June 11 reply to Joan S' June 7, 2000 - Hi Joan, My 84 year old dad is on Lasix, Coumadin and digoxin. Like your husband, he is bothered by fatigue. It really "cramps his style" because he was really active before his CHF reached the stage that it has. I believe he is in class 3 CHF. I have a book called "The Pill Book" and it lists fatigue as one of the side effects of Lasix. I'm not sure why this diuretic causes fatigue and other diuretics don't but I suspect it's got something to do with it being used in the treatment of heart disease. I looked for more information on Lasix on the Internet and one site I found had more info on Lasix side effects; Here is that information:

"...Electrolyte depletion manifests itself by adverse reactions attributed to various body systems: weakness, dizziness, drowsiness, polyuria, polydipsia, orthostatic hypotension, lethargy, leg cramps, sweating, bladder spasms, anorexia, vomiting, mental confusion and meteorism (see Precautions)..."

     The site I found this information at is called, in case you're interested in reading more about it. I guess this doesn't help much in explaining why but I just wanted to let you know that my dad doesn't like it one bit either. Joan, has your husband gone on Coreg or is he planning to? Blessings, Carrie B.

Susan N, June 11, 2000 - Hi, My husband has just been diagnosed with CHF and type 2 diabetes. We live in a small town and there are no specialists here. We are within 45 minutes of Fort Worth, Texas. Does anyone receive treatment at the Baylor Clinic at Irving and could you recommend a CHF specialist to us? Of course, we are willing to drive to Dallas if necessary to find the right doctor. We are receiving mixed messages from the doctors here. One tells us it was an isolated problem and is not chronic and with proper diet and exercise he'll live a normal life. The other has nothing but gloom and doom and is recommending all kinds of invasive procedures. He seems really interested in how much our insurance will pay him for those procedures. We are pretty much stumbling around at this point and would appreciate any help anyone can give us. We really don't know who to believe or where to start getting some answers. My husband feels very well, he has good energy and can walk at least half a mile with no negative effects. His heart beat was irregular in the hospital for about 24 hours but is regular now. We sure would appreciate some help. Thanks.

Jon, June 12, 2000 - Hi everyone, Well, some bad news, sort of. My pooter repair by Comp USA PC did not fix my system problems. The tech will be here tomorrrow to wipe out my whole system and start putting in new parts. Unfortunately, he believes the odds are 20 to 1 that I will end up with a clean hard drive, meaning I will have to reinstall and configure everything, and I mean everything. So, do not expect to see any updates, mailings or e-mail replies until Friday or Saturday. I may beat that expectation but I just don't want to worry anyone. ;-) Jon.

Janet L's June 12 reply to Cheryl's June 11, 2000 - Hi Cheryl, My husband was on a different beta-blocker and had to be taken off it due to low blood pressure. One weekend his pressure was down to 70 something over 40 something. He was extremely weak and dizzy, and I definitely felt it was dangerous at that level. He also gets "gray" at times and it really worries me. His doctor ended up taking him off the beta-blocker since it does lower blood pressure. Also, the doctor says he should be on a much higher dose of ACE inhibitor but he has not been able to tolerate that either. I understand the frustration and the need to vent. Please don't hesitate to e-mail any time.

Joan S' June 12 reply to Carrie B's June 11, 2000 - Hi Connie, Thank you for the information about Lasix. What my husband is trying to do is time the dosing of all these medications; trying to take the ones that hit the hardest before he goes to bed. He started on Coreg about a month ago and is up to 25mg a day. He is due to get his final titration on Thursday. I'm not sure why his doc is pumping it so hard but she is determined to get him up to 50mg as soon as possible. Someone said earlier that what is the point if they are sooooooo tired. I know exactly what they mean. The doc says in a few months he will feel much better. Also, I don't understand that when he is soooooo tired, his BP is 128/76 with pulse about 72. How can you be that weak and tired with those numbers. Is there another indicator? I'd love it if someone would reply who knows something about those numbers. Thanks, Joan S.

Jon's June 12 reply to Joan S' June 12, 2000 - Hi Joan, I'm not a doctor but I wrote an article about EF "numbers" here. With CHF, numbers have very limited value. Besides, if his BP is 128/76 while on Coreg, without it his BP must be way too high. I would question his doctor about that. Is he on an ACE inhibitor? If so, which one and at what dose? That would seem to be far more important than a beta-blocker, especially if he has high BP. A pulse of 72 beats per minute is very reasonable for someone on CHF meds but please realise that it is low enough to be an indicator of fatigue. What's your pulse rate? <g> Mine is in the 90s and that's on 40mg Monopril daily and 50mg Coreg twice a day! Jon.

Pam C, June 12, 2000 - Hi, My 69 year old mother has just been hospitalized for the second time in 13 months with what we were originally told was chronic lung disease, although I do remember the pulmonary specialist mentioning CHF at the time. After a week's research via the web and finding this site, my suspicions have been confirmed. Her first incidence of CHF was nearly 7 years ago and there have been 4 more, including this one, since then. She is not in good health. Her diet includes huge amounts of salt, butter and sugar, and she gets no exercise. The occurence last year followed total knee replacement surgery and she has since refused to get the other knee replaced so she can't really walk anymore. She has controlled high blood presure, she is a heavy smoker and former heavy drinker, and she is the most stubborn woman on this planet.
     During the buildup to this hospitalization, she has become the most paranoid, hostile person you could imagine. This may have something to do with her inability to sleep. I would like to find some CHF specialists in the Chicago area. As far as I can tell, the doctors she currently has won't even mention such a thing. I would like to thank in advance anyone who can help.

Mary, June 12, 2000 - Hi, My 77 year old dad has CHF. He has no appetite and has lost another 5 lbs. He has been home from the hospital about 4 weeks. His doctor says his swollen ankles have edema due to albumin. Can anyone explain? We are very concerned. He is also not sleeping and is very anxious. He takes Zoloft.

Cheryl B, June 13, 2000 - Hi, My mom has had congestive heart failure for several years but is currently being treated by a internal medicine doctor she has seen for a long time. Lately she has had several severe attacks but no longer goes to the hospital. She is treated with extra Lasix and morphine at the assisted living home she is in. Her symptoms have gotten progressively worse lately and her doctor upped her Lasix to 40mg every other day. It has not helped much. She also goes into dehydration right after each attack. Her doctor says she has CHF from mitral stenosis. I was wondering if anyone else has this condition. She is not on much medication but takes Lasix and digoxin for it. The doctor says ACE inhibitors would not help her because of what is causing her CHF. Does anyone have CHF from this condition, and have any suggestions?

Todd's June 14 reply to Pam C's June 12, 2000 - Hello Pam, My Father has CHF and he went to Mayo Clinic to see CHF specialists upon the urging of his regular doctor. They are now following a plan and he has regular follow up exams with his cardiologist.
     Your mother must stop smoking and change her diet. I don't know about her exercise situation but walking every day has helped my Dad tremendously. He does not drink or smoke anymore and has modified his diet based on what the CHF specialists told him. His condition has improved based upon this. I do not know how difficult it is to get into Mayo but it is worth a try. I hope this helps a little.

Pat, June 14, 2000 - Hi, It is 2:00am and again I am not sleeping. The last time my husband was in the hospital, the doctor told him he just had a very tired heart. Again it was another CHF attack. He has been pretty good since he has come home but I am having trouble. This has been going on for about 15 years and just at the present is getting scary. Is there anything except a narcotic that can relax you?

Laurie, June 14, 2000 - Hi, My mom has CHF. I need some advice.

Kathy, June 15, 2000 - Hi, I read the posts daily and receive so much information and hope. My husband was diagnosed with DCM in June of 1997. He is still working but is tired by the weekend. Has anyone else out there had to deal with anger from their loved one? He takes it out on everyone - me and the kids - never in front of other people. It's verbal but still can be very hurtful. He's been on an antidepressent - low dose of Amitriptyline - for a few years. I have suggested in a loving way that he see the doctor and either up on that med, change it or seek help. He didn't appreciate my suggestion. :-( Any Any insight would be most appreciated. Thank you Jon, for all you do!

Darlene, June 15, 2000 - Hi everyone, I have a couple of questions. My dad is on 12.5mg Coreg twice daily and digoxin once daily. He had been on the full dose of Coreg about 6 weeks ago but he started getting extremely tired so they lowered it back down to 12.5mg. It has not seemed to make a difference at all. He has been sleeping a lot and when he is awake, he doesn't have any energy to do anything "again." His complexion varies from flushed, to gray and ill looking. Last time it was his potassium that was all out of whack but he isn't on any Lasix anymore. His BP is extremely good when sitting but when he stands up, it drops dramatically. He just admitted to us that he has been dizzy but has no SOB other than with exertion. He has no chest pains. He has been pretty achey lately. The doc perked up at that for some reason, although he has been doing remodeling on the house (not lately though). I know he will have good and bad days but does anyone have any ideas? His doc seems to be as confused as we are. Darlene.

Pam C, June 15, 2000 - Hi, It's me again. My mom was put on a ventilator last night since all other remedies failed and she was declining rapidly. Her doctors feel that she will get off the ventilator and go home, like she did last time. I finally got the pulmonary specialist to admit that she has CHF, COPD (emphysema) and that it appears to be right-heart failure. The situation is complicated by her severe osteoporosis and spinal curvature. We have now been told that she also has an aortic aneurysm which will have to be dealt with "sometime in the future." On top of this, her mental state has deteriorated to the point where she is unresponsive and that scares me. I'm getting the feeling that the docs don't like all these questions, particularly the fact that the questions are the right ones to ask. I am becomming more and more frustrated and angry. I wonder if anyone else who has gone through this can give me some advice on handling this until we can get her into a good program. Thanks in advance. You are all great.

Judy, June 15, 2000 - Hi Everyone, I have a question concerning ICDs. My husband had one implanted on March 9 of this year due to episodes of ventricular tachycardia. He has CHF due to cardiomyopathy due to a viral infection. As far as we know, he has not had any defibrillation events. They bring you to your knees, from what I've heard. He is getting a readout on the ICD next week. The problem is that he has not been allowed to drive and it is very depressing for him. Hopefully the news next week will be good and maybe he can drive again. Does anyone out there have any experience with this? Judy.

Sherry, June 15, 2000 - Hello Jon and everyone I do not know but feel like I do, I just wanted to give an update on my mother and on Greg, the guy I met in the hospital while visiting mom. Mom has been home now for a week already from another episode of CHF. Her Lasix has been increased to 120mg twice a day and it seems to be working. She has remained at the same weight for awhile now and I am thrilled. I just talked to her on the phone and I could hear in her voice that she feels better. Her voice actually sounds different - just a tad bit stronger. This is all after the doctors said for the fourth time that she probably wouldn't make it out of the hospital this time. I just am so amazed at how little they can predict with this disease and how much prayer has helped me.
     Greg got an LVAD pump a few weeks ago and is so much better now. He is in a regular room, eats well and his pain has been getting less and less. I went to the hospital to have dinner with him last night and he looked great. Now he just needs a real heart and then he will be set. I am so grateful to read everyone's posts even though I don't really correspond with anyone directly. I am sorry this is so long but I want to write and keep in touch when things are good, not just when theyare bad. Thanks Jon and everyone else for listening to me babble. Sherry.

Jon's June 15 reply to Laurie's June 14, 2000 - Hi Lauri, Have you read The Manual yet? Also, see this page. Jon.

Bev B, June 17, 2000 - Hi all, I need some information and thought maybe someone here could help me. My husband has been diagnosed with CHF. I read everything I could find on this. Today we went to the doctor and he said it's my husband's right side that's bad. I don't know if everything is the same for right-side vs left-side failure. Does anyone know where I can find more info on this? Thanks!

Jon's June 17 reply to Bev B's June 17, 2000 - Hi Bev, I hope others answer with more info, but you can get a start here (let it load). Jon.

Howard M, June 17, 2000 - Hi, My wife has been having leg pain since her heart bypass operation one year ago. A vein was removed from that leg. Doctors feel that the pain is caused by nerve damage or poor blood circulation. Pain clinic treatment hasn't helped. Has anyone had a similiar experience? How much longer can the pain last? We may decide to get another opinion (i.e., Mayo Clinic in Rochester, Minnesota). Sincerely, Howard.

Carrie's June 17 reply to Mary's June 12, 2000 - Hi Mary, I'd like to offer my thoughts on your post regarding your dad's weight loss. Bear with me, because I ramble. I'd first like to give you a little intro on our experiences with CHF, okay? My dad has CHF too. He is 84 years old and up until about 5 years back he was walking 15 minute miles every day! As his CHF has progressed, he is experiencing "the downhill slide," as Jon calls it. It seems the downhill slide in my dad's case has dipped pretty quickly, in just a few months.
     I can't believe the radical change that has taken place in just 3 months. He's gotten to the point where he gets really short of breath when he just walks down the hall, for example. He now needs oxygen because when the oxygen level in his blood dips to 77 or so (his level in room air), he is really short of breath and at the same time his Co2 level rises, which causes confusion. When he has his oxygen, which is pretty much all the time, his color is better and he feels better. The level of oxygen at 3 liters gets the oxygen in his blood to a good level of about 90. He's going to be using a wheelchair now, with oxygen attached somehow. He can either walk pushing the wheelchair or in the wheel chair, without foot plates, propelling himself that way.
     Like your dad, my dad has lost a lot of weight in a short period of time. I imagine it is part of the slide but I am not sure. He has gone from 140 to about 118 in four months. He's steady now, for the most part. He eats and has an appetite, unlike your dad. Still, he doesn't "chow down" unless it's a candy bar or ice cream! Mary, also like your dad, my dad is on an antidepressant. His is Wellbutrin but we are trying to find another one, more effective than Wellbutrin. Like your dad, I was on Zoloft and experienced weight loss. It also made me jittery; a little hyper. Maybe your dad is experiencing this sort of side effect and if so, it may be the reason he isn't sleeping. I am now on Paxil, which is in the same family of drugs (Paxil, Zoloft, Prozac). Paxil is said to have the least agitation side effect and I agree from personal experience. My weight has increased and stabilized. I sleep a lot better too and am not jittery. I'm not recommending Paxil for your dad but am just offering my experiences as food for thought.
     I can relate to your concern about your dad's weight loss. When I see my dad at his current weight, I get so sad. I wish he could be like he was. I wish he could walk like he used to walk but I need to accept his CHF too. The more I learn, the less scary it is but it still hurts. I have learned that education about CHF - both for family members and their loved one who has CHF - takes away a lot of the fear. My dad's feet are swollen, too. He's on Lasix and digoxin (I think) for that. I have gotten him larger sized socks (they're for diabetics) because the regular ones really are too tight for his feet. The diabetic sized socks relieve the pressure. I hope at least some of this has been helpful. Blessings, Carrie.

Edie J, June 17, 2000 - Hi everybody, I'm new to this site. My significant other has been experiencing high blood pressure, depression, loss of strength and difficulty with his eyesight. Yesterday he was put on Zocal, Norvasc, hydrochlorothiazide (generic for Esidrix) and Zestril (lisinopril). He has been vomiting every 10-15 minutes for the last hour. Has anyone had this side effect? Thanks for any info, Edie.

Jon's June 17 reply to Carrie's June 17, 2000 - Hi Carrie, There is a condition called "cardiac cachexia" which is wasting (weight loss) due to heart disease. It is said to be present when a patient with serious heart problems loses more than 7.5% of his total body weight. Jon.

Ann Marie K, June 17, 2000 - Hi, This is an update on my 86 year old mother. Mom has CHF, diabetes, renal failure and COPD. My mom was hospitalized May 30 for CHF. They began kidney dialysis and removed 8 liters of fluid. Her weight has dropped from 129 lbs to 108 lbs. In the last week her heart began to slow to about 50 beats a minute. Wednesday night it stopped for 3 seconds and the nurse failed to report it to the doctor. Thurday morning the doctor scheduled an emergency dual chamber pacemaker to be implanted at noon. The papers were signed, she was taken to surgery and the new head of nursing - without looking at the chart - cancelled it. This woman made a decision without knowing the facts. I am happy to report it was done a few hours later but my mom was so upset!
     There is going to be a hearing next week and the doctor feels that this women will be asked to step down. I really truly believe that she did this because she figured that the prognosis is not great for my mom. I know every patient is different. I hope that all of us who are caregivers will educate ourselves to be equipped to let them know that we have knowledge and are not afraid to question. The administration of the hospital was stunned that I knew so much about CHF. Between this site and a doctor who is very willing to share info with me, I have knowledge to make myself heard. Blessings to all.

Dega, June 18, 2000 - Hi, I haven't been on here for awhile but I did read some of the posts from lately. I just wanted to update you on my husband. He has upped his dosage of Coreg to 6.5mg or something, and is doing better on it as far as symptoms. He doesn't feel any better as Jon said previously, but he can endure better. However, yesterday he complained about a "bubble feeling" in his chest all day. Around 3:00pm he was driving and had to pull over because he felt very faint and nauseated. Later last night, he had the bubble feeling again and sweated really badly all night, and had a hard time breathing all night. He's been the same today. He feels weak and out of breath. He is now very tired and uncomfortable in his chest. He is diagnosed with severe heart disease.

Jon's June 18 reply to Dega's June 18, 2000 - Hi Dega, take him to the doctor as soon as possible, even if it has to be an ER. Please, Jon.

Carrie's June 19 reply to Ann Marie K's June 17, 2000 - Hi Ann Marie, I wanted to ask you about the dialysis your mom went through. I am wondering if this procedure acts to drain the lungs when they are filled with fluid, or is it some sort of lung dialysis? The respiratory therapists have told us that when a CHF patient has lungs filled with fluid, they give intravenous Lasix and this drains the lungs. So I am sort of confused. Could you please explain the procedure, and your thoughts on the procedure? Your mom seems like a really cool person! (3 cheers!) Thanks so much, Carrie.

Annie G's June 19 reply to Carrie's June 19, 2000 - Hi Carrie, I'm not Ann Marie but Annie G. I saw your question posted to Ann Marie. Make sure you read the The Manual - it leads to all sorts of info. When someone has too much fluid in their veins and arteries for the weakened heart to pump throughout the body, that extra blood is said to "back up" towards the lungs. The circulation around the lungs is then also overloaded and pushes the water part of the blood into and around the lungs. It makes you cough a lot and makes you short of breath. Having to sleep sitting is another symptom. When you are given Lasix, it tricks the kidneys into making you pee out more fluid from your body than it would normally. The urine you get rid of is fluid that is taken from your blood. So it kind of works in a cycle: you pee too much, then the extra fluid that was around and in the lungs moves back into your blood system. Only now, there isn't too much fluid for the heart to handle.
     There are two kinds of dialysis: hemodialysis and peritoneal dialysis. Hemodialysis is done through a catheter that is put into a large vien. Blood is removed through this catheter and extra fluid (in addition to some waste products in the blood) is removed through the use of a large machine that is being used to do the same job the kidneys do. Then the same type of thing happens as when someone is given Lasix. Lasix isn't always enough. Sometimes the kidneys don't work well enough to help the body get rid of fluid and another method may be needed. Dialysis is one such additional method. Annie G.

Kat R, June 20, 2000 - Hi, I have not posted for awhile because things were going great but as in all things, I guess you need a reality check once in awhile. My companion was down south again and complained about the heat and humidity. He was having pains in his jaw and yesterday noticed his tongue seemed swollen. He also has Type II diabetes. By late afternoon he was at the ER. They admitted him and said his condition was due to the spironolactone. His potassium level had risen quite high and if he had not sought help, he might have had a heart attack or died. The doc told him that high levels of potassium can stop the heart. Is anyone else on this drug or had problems maintaining their potassium levels? Thanks, Kat.

Janet L's June 20 reply to Kat R's June 20, 2000 - Hi Kat, Thanks for asking your question and sharing the info about the risk of potassium levels too high. I followed the links Jon included in your post and learned some things I didn't know regarding the dangers associated with both extremes. My husband doesn't take spironolactone but he does take potassium along with his diuretic and his internist runs blood tests regularly to keep tabs on the potassium levels. So far, so good. Is your companion's doctor running blood tests on a regular basis, checking it? If the hospital stay was out of town, has he seen or talked with his regular cardiologist about it? It sounds like they may need to adjust medication levels. We've been printing some info from Jon's site (thank you, Jon!) and taking it with us to Dan's cardiologist. You might want to do that if you're not satisfied that the cardiologist is addressing your concerns. Good luck. I hope they get the levels straightened out soon.

Michele's June 20 reply to Mary's June 12, 2000 - Hi, I have just discovered the CHF family support group and noticed your question on albumin and ankle swelling. I'm sorry the doctor couldn't have explained this to you, but I will try. Albumin is a protein found in the blood. One of it's main functions is to bind fluid in the blood and keep it from shifting excessively into the tissues. As a dietitian who has worked with CHF and other cardiac patients, I have looked at low blood albumin more from a malnutrition standpoint. Low blood albumin is one indication that nutrition status may be compromised. When blood albumin decreases, the fluid it would normally bind moves from the blood into tissues where other proteins can bind it. So one has a great deal of swelling in hands and feet as well as some abdominal or lung fluid retention. Other than the obvious signs that this has occurred (edema), another indicator is that urine output slows down even with high levels of diuretics. This is because the fluid is not available to the kidneys by way of the bloodstream.
     The best thing you can do in these instances from a nutrition standpoint is to push protein in the diet: meats, cheeses (watch sodium), milk, soy products, egg whites and supplements. This should be done only in the absence of diagnosed kidney or liver disease. This will help build blood albumin back up and assist the fluid moving back into the bloodstream and away from the tissues. I hope this helps.
     My mom is 57 years old and has CHF and is contending with this very issue. I'm thankful I found this group. My mom's cardiologist is wonderful in that he explains everything he plans to do in her care. We discussed the use of dobutamine due to her left-sided failure and unresponsiveness to Lasix, spironolactone, digoxin and captopril. He has decided to use this route to see if her quality of life improves. I'm eager to see her feeling better. This illness - since bypass surgery in November - has taken a huge toll on her, and on my brother and I.
     Also, to Kathy (June 15th) about anger from your loved one. I can definitely relate. My mom is more hostile, paranoid and irrational than I have ever seen her. It takes longer to tell her things because she misinterprets a lot of what is said. She is also certain at times that those involved in her medical care are inept. I wouldn't say this is to the point of dementia but I often wonder if the decreased perfusion of blood to her body also translates into decreased blood to the brain; Not to mention the fact that here is a relatively young woman who has so much life left to live and whose life seems to be taken from her with each hospitalization. That's enough to make anyone angry. I don't know if any of this helps you. I will say that for myself, I'm getting counseling to help cope with these changes and the possibility of losing my mom. Perhaps if you can't help your husband have a more positive outlook, you can help yourself and your children cope with his anger.

Cheryl, June 20, 2000 - Hi, Jim isn't feeling well today. He thinks like it might be indigestion or it may be his heart. How do we tell? He has had pain above his breasts on both sides. His weight is a couple of pounds up today but he did overeat for Father's Day. He doesn't want to run to the ER but I sure would feel a lot better. How to know when to go to the ER and when to stay home and take another Lasix?

Dega, June 22, 2000 - Hi, Just a quick comment: I found a site that says people with "severe" heart failure shouldn't take Correg. Does anyone know about this? It is basically for people with mild to moderate heart failure.

Janet L's June 22 reply to Cheryl's June 20, 2000 - Hi Cheryl, I hope everyone chimes in with some comments on the subject of how do you know when to go to the ER. I wish I knew too! It is so hard to watch your loved one experiencing scary symptoms that are becoming part of everyday life, and to have a sense of when it is at the point of needing urgent attention. If we went to the hospital every time I felt that concerned, we would be going a lot. Dan usually seems to have a sense of when it is different or worse and when it is just what he's learning to live with. I might suggest we need to go, but basically I trust him when he says we don't.
     One of the posts recently described a situation that I think I would have insisted even against Dan's wishes, but we have never had one of those situations yet. I do worry that I won't know it's the time to insist we go or call 911. One thing I would never do is minimize his concern. If he thinks we need to go, we go immediately. I'd rather be safe than sorry and I would never worry about having gone unnecessarily. I'm not afraid to be wrong. My mom was diabetic and almost lost her leg from a foot infection because my dad wasn't really hearing her concern and didn't want to "bother" the doctor on a weekend when they had just seen him on Thursday.
     In Dan's case, it's life and death so my method is to trust Dan's judgement either way and hope that I will recognize it if he's ever wrong. I would never hesitate to call the cardiologist and describe the symptoms and get an opinion by phone if Dan doesn't want to go, but I'm still concerned! My 2¢. Let's hear from others!

Gus R's June 22 reply to Cheryl's June 20, 2000 - Hi Cheryl, That's a tough question. One becomes a little more sure about symptoms in time, but an error in the wrong direction could end the guessing game. My advice would be to err on the side of caution. After a few trips to the ER, Jim's dox might explain it to your satisfaction. If not, you can just keep remembering that it's better to be safe than sorry. I'm about 50/50 on my trips to the ER, but have had no complaints from my dox, the ER dox, Medicare, or even my HMO, on the ones where I return home in a few hours. Best wishes, Gus R.

Jon's June 22 reply to Cheryl's June 20, 2000 - Hi Cheryl, Some things done routinely can eliminate the guesswork part of the time. Weighing oneself in the morning at the same time with nothing on but skin is smart. If you gain 2-3 pounds in 24-36 hours, odds are that you are heading for a CHF episode and need either to take some extra diuretic or to go to the hospital to get IV diuretic. You should work this out with your doctor - whether it's ok to take extra Lasix, when, how much, how often, how much extra potassium to take as well, and so on.
     Irregular, or very fast or slow heart rhythms are a different story. I strongly urge anyone who notices one of these problems to head for the ER as long as someone else can do the driving. If not, call 911. It may be nothing but arrhythmia is nothing to play around with. It can be fatal. If you have recurring arrhythmia, be sure to work with your cardiologist until you know what kind of rhythm disturbance it is and whether you need treatment - drugs, ICD, pacemaker, RFA, whatever. After that, either get the treatment <g> or be aware when it happens so you can tell if it's the "same old, same old" or if it is edging into something new.
     Fainting (syncope) is not to be toyed with either. It signifies a severely reduced blood flow to your heart/brain so again, find the cause and if necessary get treatment rather than trotting to the ER now and then. If it happens a first time, get to the ER immediately. Naturally, that's if someone else can get you there. Otherwise, call 911.
     Shortness of breath is a judgment call. You may need diuretic, since fluid being held in the liver and abdomen can really make it tough to breathe. Be aware that many doctors - even CHF doctors - blow you off if they don't see any signs of fluid retention and you're complaining about SOB. However, as I discovered personally, a quick echo may show falling cardiac output and that needs medical attention quickly. SOB can also accompany a-fib or fast heart rhythms, so you need to see the advice above and take it all into account. Certainly, the more different or severe symptoms you have together, the more likely it is that you need medical care quickly.
     I hope this is helping and not just confusing you. As Gus wisely points out, over time a CHFer will learn what feelings in his body really require attention and which ones must just be endured. However, right in line with his statements, I want to say this very emphatically: People tolerate problems in their body that they would put their car in the shop for tomorrow. People also put up with mistakes, put-offs and put-downs from doctors that they would sue their auto mechanic for. Hey, doctors get paid to be "bothered." That's why they get the big bucks!
     So, go to the ER whenever you think it might be a good idea and over time you will learn to tell the difference. In the meantime, sit down and talk over episodes you have had with the doc and see what he has to say. That's why taking notes on those episodes right after they happen is such a good idea. For what it's worth, Jon.

Jon's June 22 reply to Dega's June 22, 2000 - Hi Dega, That was the general opinion for a long time. Of course, it was also the opinon for 15 years that beta-blockers were bad for all CHFers! <g> However, if a person with severe CHF can tolerate the startup and upward dosing titration, it is great for them as well. See this article, this article and this article. Let each one fully load and it will take you to the exact article on the page. I have another article on the same subject but haven't gotten it up on a page yet. Jon.

Rebecca, June 22, 2000 - Hi, It's been awhile since I've been to the site but it's always reassuring to read each message and answer, and to know that others are walking the same path we must walk. My question: Is it a normal CHF problem for my husband Elton to have suffered with gout/joint pain ever since Christmas? He's been on allopurinol for months. He's taken colchicine 3-4 different times. He takes indomethacin for pain. I was under the impression that once he started the allopurinol, his gout would be controlled. Duh - if it sounds too good to be true, it probably is, huh? His pain moves from one joint to another: wrist, knee, ankle, etc,..., but he's always in extreme pain. Is this just something we have to accept?

Linda, June 22, 2000 - Hi, Does anyone on this site have a heart condition called Dressler's Syndrome? My husband has it and I would like to talk to anyone, be it the sufferer or the supporter. I am feeling very weighed down by his illness right now, I am frustrated with medication problems and generally fatigued after all that we have been through. Hopefully, someone will know what I mean. I have supported 101% but lately I have been feeling emotionally drained with it all!

Mary, June 22, 2000 - Hi, This is a follow up to my June 6, 2000 posting. Amazingly, my mother in law has come home from the hospital! The doctor is also surprised. He didn't give us much hope and had told us to make funeral plans. She is so much better today. I am glad for this forum. This is a good place to find out that you're not alone and that CHF is a very mysterious condition that can be overcome in many ways.

Frank S' June 22 reply to Janet L's June 22, 2000 - Hi Janet and Dan, My suggestion would be that if Dan is opposed, but you have that "gut" instinct, call the paramedics and let them convince Dan that he needs to be checked out by others. In other words, better safe than sorry. Later, Frank Smith.

Cheryl T, June 22, 2000 - Hi everyone, Thanks for all the input. It really helps. This is probably a dumb question but what should your pulse be at rest? If it's low, like 45 or 50, does that mean you may faint? It's not related to the heart rhythm, is it? Jim doesn't seem to have any problems with a rapid heart beat or anything like that. He did call the doctor and he does want to see him for an emergency visit if it happens again.
     One more question: They didn't increase his Coreg again. They left his dose at 6.25mg twice a day. Does it do any good at all to take it at this low dose? Jim started it mid-May and since then he's asleep or going to sleep all the time. Has anyone gotten past this phase? How long should it take? He felt good before starting this drug. Does the way he's reacting to it mean he isn't going to be able to tolerate it?

Judy, June 22, 2000 - Hi, I have a follow up to my previous post on ICDs and driving. My husband had his ICD checked out yesterday. This is done by putting a large mouse-like device over the ICD to get readings, which are fed into a computer software program provided by the manufacturer (Medtronic). I am happy to say (and this happiness was short-lived!) the doc said there were no "events" and when we asked him, he said it was okay for my husband to drive. My husband had a great day and even purchased a new guitar that he had been wanting for a long time. Unfortunately, almost with ironic cruelty, he was playing his new guitar later in the evening when he had his first "event." At first, he thought maybe he got shocked by the guitar. Then, he thought maybe the magnetic pickups in the guitar interfered with his ICD. Of course he discussed all these theories with his cardiologist, whom he called immediately after.
     This morning, he went to get another readout on the ICD. The results were unnerving to say the least. The ICD had indeed delivered a shock, 30+ seconds at the maximum jolt of 34 joules. His heart had not fibrillated but he had experienced 3 consecutive lengthy episodes of ventricular tachycardia, which tripped the ICD. If it happens again soon, my husband may be put on some anti-arrhythmic drugs. After 3 months of slow improvement after the ICD surgery, we were beginning to feel hopeful that maybe the arrhythmmia would just disappear! We have been coming to grips with the CHF and the DCM and are meeting once a month with a support group for CHFers and family and friends at a local hospital. The ICD going off delivered a reality jolt as well! Imagine such joy and such sadness all in the same day! Of course, driving is out for now and we can even accept that it may never be allowed again.
     I would like to mention that my husband had been under renewed stress the past week due to a new onslaught of legal issues that he had been dealing with before his ICD surgery. It seems more than coincidental. To all of you who are dealing with unbearable stress that comes from caring for a loved one with life-threatening illness, I empathize. Been there, done that, and will do it again! Judy.

Jon's June 22 reply to Judy's June 22, 2000 - Hi Judy, I understand your sentiments completely. When things are looking up, we always want them to zoom in that direction permanently! <g> However, maybe it would help to view the ICD event as an instance of having your husband's life saved, rather than having caused his driving privileges to be taken away. Still, having been restricted from driving for a lengthy period myself, I do sympathize! Jon.

Bill D's June 22 reply to Jon's June 22, 2000 - Hi Jon, When my cardiologist found out that Rosie had been driving me to the ER, he warned her. He said that if I'm "in extremis" it wouldn't be pleasant and she might have an accident. I don't want to know what "in extremis" means, but I have a vivid imagination. So we call 911. Bill D.
Jon's note: An excellent point, and well taken

Wendy, June 24, 2000 - Hi, I haven't posted for awhile but always read this site and pray for all of you. I wanted to update you on my husband. Mike's cardiologist has now agreed that he has Lyme cardiomyopathy. His Lyme Disease doctor has always said it but the cardiologist was not very familiar with the disease. Well, after the first 2 Lyme vaccines (we did not know he had the disease at that time) his heart symptoms dramatically increased. He will not be getting the third vaccine. He is continually improving, at a snail's pace, but it's the right direction. I just wanted to post this because as I said, Lyme Disease is a rapidly spreading disease and it's only recently that it is connected to causing dilated cardiomyopathy. Protect yourselves from those ticks! Take care everyone and God bless! :-) Wendy.

Gus R's June 24 reply to Rebecca's June 22, 2000 - Hi Rebecca, No! In my opinion, Elton should not have suffered with gout/joint pain ever since Christmas. My experience with gout/joint pain has been that it can be hard to avoid completely, but a 6-month run of it makes me think it might be time for a new doc. I'm thinking of a PCP doc or a rheumatologist, not the heart doc. Make sure they know about the CHF and have a list of his meds, and them tell them to stop the pain!
     What I'm trying to say is stated much better in the next to last paragraph of this post. I suffered with gout off and on for many years through many different dox, and was never too pleased with any of them, but they all provided some relief quickly. It would be back in a month or 6 but they stopped the pain and I lost very few days at work due to it. Prednisone and Prednisolone worked best for me but I believe they are contraindicated with CHF or CHF meds, but I can't believe his symptoms can't be toned down, even if the underlying problem still exists.
     My last bad attack of gout occurred while I was in the hospital the first time for CHF. I was very miserable and asked for Prednisone but the heart doc was against it. We had a fine old rhubarb and he sent for a rheumatologist. I can't remember what I did get for it there but the pain started tapering off quickly and was gone in about a day. I'm sure they treated only the symptoms and not the cause but I had a couple of very minor episodes in the first year of CHF and none since. I think this is probably because of the radical diet changes I made and or eliminating all alcohol. Best wishes, Gus R.

Rebecca's June 25 reply to Gus R's June 24, 2000 - Hi Gus, Thank you so much for responding. I've been thinking that this cannot be normal, even for CHF patients! I looked back at other posts I had made in The Archives Back in March, I had written about 3 different joints being swollen and how red streaks had also appeared. Jon had advised us to go ASAP to the doc, which we did; how Elton couldn't even lift his leg to place it into a car; how with him seated in the car he couldn't lift his "gouty" leg the inches necessary to get it into the car due to the pain. The night I wrote my post, I'd had to lift his leg for him so that he could get it onto the bed for the night. It hurts me to see him in so much pain. That "last paragraph" you mentioned was excellent! I read it and thought "Of course! A person (CHFer) does learn know his own body and this is not normal." Another thing you said clicked also: Elton is now making radical diet changes. I hope it helps. Thank you again. I thought for awhile that no one was going to throw us a lifeline this time but you did.

Dega, June 27, 2000 - Hi, My husband seems to be getting weaker. He complains about a tight feeling in his chest all the time and as Jon mentioned once, a bubble feeling, which seems to be there more often now, often as in daily. He gets out of bed later now and everything is more of an effort. He takes all his meds and is still on Coreg. He is very discouraged and I don't know what to to but be there for him. He is constantly under cardiology care. Does anyone know if he is entering the end of the line?

Jon's June 27 reply to Dega's June 27, 2000 - Hi Dega, That feeling of fullness in the upper body can be caused by 3 things that I know of:

As you can see, all 3 point to seeing a doctor ASAP. If this feeling has persisted for more than 3 days and his cardiologists are aware of that but are not doing anything about it, maybe he needs to see another cardiologist - ASAP.
     Chest tightness is often a form of angina. I get it myself and I hate it. Nitro is usually the solution but if it persists after a nitro pill, a 5-minute wait and a second nitro pill, you should usually go to the ER or call 911. Does your husband have blocked arteries? CHFers can get angina even with clear arteries but it is less common. Regardless, that chest tightness is not something he should have to live with. It can be dealt with. Jon.

Sherry, June 27, 2000 - Hi Jon and everyone else, I just wanted to share some good news. I wrote a few times before about Greg, a wonderful man I met in the hospital while my mother was sick with heart failure. I am happy to say that Greg got his new heart this past Saturday! I saw him right after the surgery and I saw him yesterday when he woke up. The prognosis is very good. Things went very well. He had an LVAD for about 5 weeks and now has a new heart! I guess now we just wait to see how he progresses.
     My mom has also been relatively stable lately on her new higher dose of Lasix. Too bad they can't give her a new heart! The doctor said one day - not in her lifetime - they will be able to do remarkable things for older people with CHF. I wish all of you blessings and good days. Thanks for listening to me. Sherry.

Jon's June 27 reply to Sherry's June 27, 2000 - Hi Sherry, That's great news! Some older CHFers do get new hearts. See this page. Jon.

Virginia R's June 27 reply to Rita C's May 27, 2000 - Hi Rita, I just now read your May 27 posting about CHF specialists in Fort Worth. I will tell you that we are extremely pleased with the CHF specialist in Dallas at the Cardiovascular Institute. Dr. Yancey is my father's cardiologist and head of the transplant team. Call 1-800-432-8192.

Virginia R, June 27, 2000 - Hi, I've not written about my dad, Mike W, since January when his lipids were out of control. He's had a difficult time since leaving our home and moving back to Stephenville, Texas in December. This month has been terrible for him. It started out when he had a persantine test and the physician filling in for his doctor decided to hold off on the antidote while my father experienced what he felt was a heart attack. I would appreciate any information on this test. I remember reading on this forum that the test is a chemically-induced stress test. Dad was participating in this test because the week before, he had been told by his cardiologist that "there was more damage to his heart, and there was nothing more that could be done to improve the function."
     They asked my father to consider participating in a Phase 2 drug trial and the persantine test was required for entry in the trial. It took a lot of wind out of my father's sails and required him to rest for several days after the persantine test. Last week I drove my father to Dallas for another of those non-invasive cath procedures in hopes that they could continue titrating some of his medication. He was told they could not go up on his medication at that time and that they had wanted him to be scheduled for yet another heart cath, through the groin or arm in July.
     My father had a pacemaker implanted last September after a cath. Could someone explain to me what the hoped for outcome of another catheterization might be? I will of course ask his cardiologist the next time I see him but I was hoping to get some information before then. Does anyone have information on the persantine test? How unusual is it to have a damage as a result of the test? I do realize that he had damage before going into this test. One and a half years ago my dad had only 3-4 weeks tops left, when I found this CHF clinic. As you can see, he has now turned 60 and is still with us and I'm thankful to this specialist!
     Now, Dad's also being hospitalized for a gastroparesis study secondary to diabetes and his gallbladder appears to be diseased as well. His CHF clinic nurse strongly recommended that dad transfer to Dallas for any surgeries so that his cardiac output can be monitored at the same time. Dad's diagnosis are diabetes (brittle), cardiomyopathy (10 years), CHF (left and right sided). He is on Coreg, Prinivil, Coumadin, Lasix and a slew of other meds. They've just taken him off of zaroxolyn due to an abnormally low blood sodium level. I wish all of you well. This site has been the most wonderful thing for my family. God bless you all.

Kathryn, June 27, 2000 - Hi Everyone, I have a question about dealing with my son's cardiac care. I know he is the best and only person who can judge how he is feeling but I worry that he is being a bit careless about his heart health and I don't know how best to help him, or if I should interfere. He works 27 hours a week at a grocery store across the street from where we live. He is on his feet all day long, sometimes an 8 hour shift, sometimes 5. He recently took a second part-time job to help him pay off the part of the hospital bill that insurance didn't cover. On that job he is working 12 hours a week at a Hollywood Video store, again on his feet the whole time. So he has gone from working less than ½ after his hospital stay to working more than full time.
     Then when he is off work he burns the midnight oil with his friends playing internet video games at a game shop one of his buddies owns. So that means he is out till 3 or 4:00 AM. Then he gets up at noon or 4:00 PM (depending on his shift) and works. I am worried that his body clock is getting screwed up. I am worried that he is taking on too much. His CHF is compensated but really I am concerned with what the future will bring. Recent posts have made me scared for the future more than ever. We have a good relationship but I find myself being the food police and the sleep police.
     This morning he came home at 4:30 AM and was supposed to go to cardiac rehab at 8:30 AM. I usually drive him because he doesn't drive or own a car but this morning I put my foot down and refused to take him to rehab because I felt the sleep was more important after being up all night. He has to work a 5:00 PM - 10:00 PM shift tonight. I am out of ideas on how to deal with this. By the way, my son is 26. He is an adult! He is tired and so am I. I get angry when he disregards his health. He gets angry when I nag. I keep thinking he is taking too much for granted. Any ideas, guys?

Phyllis J, June 27, 2000 - Hello, I have to apologize to everyone who responded to my offer to share with them what the final stages of CHF were like after my husband passed away. I wasn't prepared for the number of responses that I received, although I wasn't surprised. The other thing was that I was not prepared for my own grief over the loss of my life's partner. That made it very difficult to put those final months into writing. It was just a little too painful. However, I will do it and hopefully soon. Again, my apologies and my thanks to all who expressed condolences over the loss of my husband.
Jon's note: Phyllis, You owe no one any apologies. You take your time.

Kat R, June 27, 2000 - Hi, I just have one quick question or two. Does anyone know of, or have a list of foods, that are high in potassium? And has anyone been asked about their diet before being put on Aldactone? Thanks, Kat R.

Nancy O, June 27, 2000 - Hi, This is my first time posting a message. I'm a 32 year old female. My father is 78 and was just officially diagnosed with CHF. He just had his second heart attack and open heart surgery in September of 1999. Ever since then he has been in and out of the hospital with fluid in the lungs. This last visit to the hospital is when they told him he had CHF. I'm worried, my mother is worried. Hopefully he can learn to live with this, but I'm just scared of losing him. I've got 2 young boys that I want to get to know and remember him, because he is a great guy. I just thought that posting this message would help me. It seems that my husband doesn't understand what I'm going through.
Jon's note: Be sure to read The Manual

Cheryl B, June 28, 2000 - Hi, I just took my mom to the hospital yesterday because she has had 4 severe CHF attacks in the last week. She has a large plural effusion on her right lung with a lung capacity of 20% on that side. They are going to drain off the fluid with a needle today but the doctor says it will be right back. They said more Lasix would not help her because she is already dehydrated, and nothing else could be done. I have seen her have attack after attack in the last 2 months with fluid in her lungs. Does anyone know what is the best way to keep them comfortable under these circumstances?
     Should I put her on a morphine drip so she won't feel the shortness of breath and how it all ends? I'm very scared and don't know what to do for her but I don't want to see her go through any more of these attacks. The Lasix still helps in the attack but they are now coming much, much closer together. If she was taken off of digoxin, would she have a heart attack? I just don't know what to expect or how to help her get past this quickly without suffering. Any thoughts would help. Cheryl B.

Jon's June 28 reply to Cheryl B's June 28, 2000 - Hi Cheryl, I am not a doctor and don't know the specifics of your mom's health but this sounds like the sort of situation inotropes were designed for. Have you discussed them with her doctor? Jon.

Dega's June 28 reply to Jon's June 27, 2000 - Hi and thanks for the reply, I forgot to mention that about 3 weeks ago my husband spent the night in intensive care due to intense chest discomfort. They did an MRI and found that one of his 4 bypasses did not take; the one on his 50% blockage but the artery was doing fine right now. They took blood and said everything was doing fine. On Coreg for a month now, he has skipped heart beats every day all the time, with that bubble feeling all the time and is just so tired all the time. Will Coreg give you all this? It's been in his system for a month now. Today he goes in to check his Coreg. Dega.

Jon's June 28 reply to Dega's June 28, 2000 - Hi Dega, Coreg should help skipped beats (PVCs), if that's what they are. I had PVCs like crazy and Coreg helped mine, so at least I know it's not just a theory. <g> What are called skipped beats can be other things than PVCs too, but Coreg should help most of them, since it's a class 2 anti-arrhythmic drug.
     Can you describe that "bubble" feeling more precisely? Your info today sheds a different light on his whole situation. His symptoms may be from his coronary artery disease and not from heart failure at all. Jon.

Dega's June 28 reply to Jon's June 28, 2000 - Hi and thanks for the answer, I'm so tired of thinking and wondering. Since he has been on Coreg he seems to have skipped beats every day now. The feeling in his chest is a full feeling and he feels that all the time now too. The other feeling in his chest is a tight gripping feeling accompanied by arm numbness and sometimes a pain feeling in his armpit. He also complains of not being able to breathe. This happens during the day and at night. He burns he sweats, he hurts, he's tired, very tired. I'm tired. Dega.

Jon's June 28 reply to Dega's June 28, 2000 - Hi Dega, I can only say what I would do if I were the one experiencing what your husband is experiencing. I am not a doctor and I don't advise you to do anything specific but if it were me, I would go to the ER next time I had those pains and make sure I wasn't having a heart attack or stroke or mini-stroke. I would then demand to see my cardiologist immediately and find out the exact cause of all these feelings and start a new treatment course to relieve the symptoms and treat the cause. If my cardiologist didn't know what it was, blew it off as something I just had to live with or refused to see me on short notice, I'd be at another cardiologist the next day. Just my 2¢ worth. Jon.

Kat R, June 29, 2000 - Hi, This is just for your information, I had posted requesting information on potassium rich foods. I did find a web site that was very helpful. It is I hope this helps anyone else who has had questions or thoughts about this. Kat R.

Dega's June 30 reply to Cheryl T's June 22, 2000 - Hi Cheryl, Like your husband, mine started Coreg in mid-May with 3.12mg. Before that he had some, but not much energy. The first dose totally knocked him down for 2 weeks, then I noticed he was starting to get around better and his head was, and still is, clearer. He still felt bad but was enduring better. Then came 6.25mg twice a day. He was okay for a couple of days, then wham! He was down for almost a week. He has been in the 6.xmg dose range for 3 weeks now and he can't even get out of bed until afternoon. He is sooo weak. They postponed his next dose increase for another week because of his extreme tiredness. He weighs 267lbs, which is not good. He gained 3lbs in a couple of weeks. We are told to watch his weight every day. I have a couple of posts ehere. The doctor told us to expect this bedridden thing and because of his body mass that he will need a higher dose of Coreg. That is what they are working towards.

Jon's June 30 reply to Dega's June 30, 2000 - Hi Dega, I had no idea your husband was that large or I would have mentioned another possibility days ago. Have you had his blood sugar properly checked for onset of diabetes? See this article for more. If he is obese, he is at much higher risk for this complication of beta-blockers and it would greatly contribute to a fatigued state. Jon.

All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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