The paperwork never ends The Archives
Loved Ones - March, 2001 Archive Index

John Diggins 3-2     seek CHF specialist in western New York
Andrea 3-2     seek recipe ideas, caregiver experiences
Susie's 3-5 reply to Suzy C's 2-9     husbands who won't change their life style
Sherry 3-6     Tikosyn, dofetilide questions
Davida S' 3-6 reply to Mary T's 2-20     let us know how it went
Mary T's 3-8 reply to Davida S' 3-6     update
Gus R's 3-8 reply to Sherry's 3-6     dofetilide
Suzy C's 3-9 reply to Susie's 3-5     update on my husband
Davida S' 3-9 reply to Mary T's 3-8     fluid intake
Susan 3-9     cough, swelling, is this just how it is?
Marv B 3-9     throwing up & more, what to do?
Jon's 3-9 reply to Marv B's 3-9     some possibilities
Jon's 3-9 reply to Susan's 3-9     some general comments
Bill D's 3-10 reply to Susan's 3-9     ask the docs questions
Davida S' 3-13 reply to Susan's 3-9     please get a chest x-ray
Mol 3-13     seek info on specific Coreg side effect
Davida S' 3-13 reply to Marv B's 3-9     taking meds to avoid stomach trouble
Roxanne 3-13     seek laboratory
Sharon 3-13     update, can't find a CHF doc here
Susan 3-13     update, not good news, & more
Vicki 3-15     questions about loss of taste
Jon's 3-15 reply to Vicki's 3-15     loss of taste posts
Annie G's 3-16 reply to Vicki's 3-15     loss of taste possibilities
Annie G's 3-16 reply to Susan's 3-13     oxygen, doctors & more
Nadine's 3-16 reply to Vicki's 3-15     loss of taste possibilities
Walter K's 3-16 reply to Vicki's 3-15     loss of taste possibilities
Jon's 3-16 reply to Walter K's 3-16     archived posts search
Susan W 3-17     my mother died, best wishes
Jack 3-17     salt substitute
Dega 3-17     can we do anything?
Jill 3-19     doctors and the elderly!
Paula 3-22     prayer request
Suzy C's 3-23 reply to Jill's 3-19     doctors, venting & more
Robert J's 3-24 reply to Paula's 3-22     what time is his cath?
Paula's 3-24 reply to Robert J's 3-24     cath schedule, EF & more
Susan 3-26     husband's cough & problems were cancer
Julie G's 3-28 reply to Susan's 3-26     praying for you & more
Martha 3-28     can meds cause mental & emotional problems?
Todd 3-29     can meds or CHF cause mental & emotional problems?
Steff 3-31     what to do about diuretics?
Bill D's 3-31 reply to Martha's 3-28     about those meds
Peggy 3-31     diarrhea problem - what to do?

John Diggins, March 2, 2001 - Hi, My mom-in-law has CHF and I cannot seem to locate a CHF specialist in western New York; more specifically, Buffalo. Can anyone help? This is my first visit to Jon's Place. Keep up the great work, and good luck.

Andrea, March 2, 2001 - Hello all, We're in celebration mode! My mom got her new heart in January after 4 years of being diagnosed with cardiomyopathy. She's now restricted to a low bacteria, low salt, and low potassium diet. Arrggghhhh! Does anyone have any tips, recipes or ideas on how to make limited food items appealing? I'd appreciate any advice and would love to hear caregiver's stories of helping their heart patient (loved one) recover. Thanks, and God bless!

Susie's March 5 reply to Suzy C's February 9, 2001 - Hi Suzy C, I know what you are saying about your husband not eating right. My husband was diagnosed in February of 1996. He had a quadruple bypass done at the time. While he was in the hospital I shopped for all the "right" foods for him to eat and stocked the cupboards full. Well, this lasted for about a week of eating right. He loves his butter and there was no taking it away from him. He is a farm boy who likes to eat all the goodies associated with it, like cheese, butter, eggs, marblized steaks, etc.
     He has an ejection fraction of 18%. He never fully recovered from the breathlessness and it's getting worse. He eats whatever it is that he wants because he feels that he might as well enjoy the food now because the time will come when he won't be able to, which is true, I guess. You can't let yourself get all worked up over the fact that your husband isn't eating right. You are doing the best you can with the situation and if there is a problem, it's not your problem. I don't mean to sound harsh but both your husband and mine are doing all of this to themselves and neither you nor I can change it. You can lead a horse to water but you can't make him drink.
     I know the frustration you are going through with all of this because I am walking in your shoes. However, as Jon stated on his site where he is going downhill now, everything is happening because it is the way it's supposed to be. We can't understand why this is all happening to us but God has his reasons. I dread the day when my husband may leave my side but I know that God will watch over me and our 2 sons. There is a prayer that I say every morning and would like to share it with you. It goes like this: "Lord, thank you for the light of another day and give me the strength to handle whatever you send my way." Take care and God bless.

Sherry, March 6, 2001 - Hi, My mom has all the symptoms I see on this site. I don't think the doctors call it CHF but it sounds like it to me. They want to put her on Tikosyn (dofetilide). Does anyone have experience with this drug? She uses many of the drugs mentioned here such as Lanoxin, diuretics, cholesterol lowering meds, high blood pressure, you name it. Her heart fibrillations with accompanying chest pains, shortness of breath and lack of endurance, are really affecting her quality of life. Does Tikosyn help? It requires hospitalization to begin treatment, I believe.

Davida S' March 6 reply to Mary T's February 20, 2001 - Hi Mary, It sounds like your husband may have been a bit dehydrated with the low Bun and creatine levels. I am sure by now his BP has come up to an acceptable level. Let us know. My husband's was that low but it was Coreg pushing it down. It got kind of scary. Please update us.

Mary T's March 8 reply to Davida S' March 6, 2001 - Hi Davida, His blood pressure has come up to 70 over 48, not much but now he is in failure again. His oxygen reading was 85 at rest yesterday and his jugular distension was 8. He did manage to gain 4 lbs of the original 7 back but I guess it was too much. It's like they say - a delicate balancing act - and we can't seem to get it quite right. It was really nice having him off Lasix for a bit though, to let those kidneys have a little break and to see him in such great spirits as well. He was ready to go fishing alone and even get that old Harley on the road but this week it's another story. Thanks for the concern, Mary.

Gus R's March 8 reply to Sherry's March 6, 2001 - Hi Sherry, I haven't taken Tikosyn (dofetilide) myself but have followed its testing results and subsequent FDA approval in October, 1999. At this time I'm taking a similar med which is working pretty well for me but I plan on trying Tikosyn if or when I have arrhythmia problems more often.
     Tikosyn is made by Pfizer who has a web site for the product here with all of the details on it. If you are not familiar with the warnings, precautions and adverse affects that must be spelled out for the consumer, they might be a little frightening but almost all drugs have some potential problems. I am not an expert on meds nor do I have any qualifications for giving advice on meds but I am always willing to toss in my opinions so here they are:
     I think it was developed and manufactured specifically for persons with the symptoms you describe. Its potential for causing problems seems to be in line with similar meds and for a newer med it seems reasonably priced so I would go for it. You are right that it should be started in a hospital. Pfizer says, "Treatment with dofetilide must therefore be started only in patients placed for a minimum of 3 days in a facility that can provide electrocardiographic monitoring and in the presence of personnel trained in the management of serious ventricular arrhythmias."
     I would add 2 more things to consider. Meds of this type can be as hazardous to withdraw from as to initiate, so they may not be for a patient who is prone to forgetting their meds, nor for one who might decide on their own that they do not need them anymore since they feel better.
     Since Tikosyn is a newer med, there may be some long term adverse affects that haven't shown up yet and might not be known for many years. My feelings are that I would be very unhappy to go blind (or whatever) after taking it for 10 years, but I would consider the risk acceptable if the quality of those 10 years was noticeably improved. Best wishes, Gus R.

Suzy C's March 9 reply to Susie's March 5, 2001 - Hi to all, Thanks for responding, Susie. We saw Dr. Katz at New York's Presbyterian Hospital yesterday. My husband has both CHF and a lung problem, as I noted before. Dr. Katz was gracious, informative and helpful. However, my husband will not qualify for any of their programs since his EF at last testing was up to 59%! That's normal! He still has all the symptoms, however. Dr. Katz and our own doctors will now try to determine whether it's the heart hurting the lungs or the lungs hurting the heart. There's more work to be done but we have more answers and a better direction on which way to go with treatment. Then we can work on that old diet! :-)

Davida S' March 9 reply to Mary T's March 8, 2001 - Hi Mary, When my husband was in a similiar position the doctor cut his Lasix in half and Dan increased his fluids by 16 oz. Dan keeps track of how much fluids he has each day. He trys to have no more than 64 - 70 oz, which to him is (4) 16 oz glasses of water for the day. It was really hard for you guys since you had the instructions to gain weight but it has to be a slow gain and hopefully a caloric gain, not a fluid retention gain. If he gets a little dry again have him monitor his intake of fluids and increase it slightly. I am confident he will get back on track with God's help. Hang in there.

Susan, March 9, 2001 - Hi, This is my first time here and the site is wonderful. My husband has CHF, COPD and diabetes. His EF is 25%. His heart is very poor because he had multiple heart attacks the summer before surgery. He also went into cardiac arrest twice in the hospital, both times after surgery. He had surgery September of 2000 with 5 bypasses. They also did carotid surgery. He has an ICD.
     At first when he came home he was doing so much better, but he has deteriorated over the last few months. He had to stop cardiac rehab because he developed breathlessness and a chronic cough. The cough has been a constant thing since November, 2000. He was a 2 pack a day Camel cigarette smoker and stopped cold turkey in November, when the cough began. He has lost 65 lbs since the surgery and does not have any appetite. The cough causes him to vomit, which happens frequently. He is on Lasix as well as other drugs because he continues to swell in the extremities and he continues to lose weight.
     The doctors have changed all his meds, removed him from the beta-blockers and ACE inhibitors trying to stop the cough, but nothing works. He has had a CT of the sinus by the ENT and it showed nothing. Will he forever have this cough? Is this a part of CHF? He is also on oxygen now, which he got 2 weeks ago. At least he can now walk 6 feet without being out of breath with blue lips. Is this as good as it is going to get? The docs won't tell us anything really. Both of us are sad and confused. My husband is only 54 years old and was very active. I guess the bottom line is, is this how it is always going to be? Is he actively dying like we both believe, and they won't tell us? What should we do?

Marv B, March 9, 2001 - Hi, I have a 20 year old daughter diagnosed with cardiomyopathy early in December, 2000. She has complications of fast heart beats and has an implanted defibrillator also. Her EF is around 10%. Her cardiologist has recommended going to a heart transplant center but she is awaiting a disability determination from SSA since funds are not personally available and we don't know of other resources.
     Right now I am interested in her present well being and feeling. She is loaded up with lots of meds and with all the Lasix, she has to take potassium replacement. Since the beginning, potassium has kept her upset and she is unable to keep any food down, with throwing up that is very painful to her in general. Even without taking the potassium she is constantly nauseated and upset. Does anyone have any suggestions? I hate to see her so uncomfortable and just having to wait and wait for a bureaucratic response so she may receive further medical attention.

Jon's March 9 reply to Marv B's March 9, 2001 - Hi Marv, Just a couple of thoughts: If she is nauseated without taking potassium, why do you think the potassium is to blame for her throwing up? Of course it could well be, but it's easy too decide one thing is the cause and then ignore other possibilities. Just be careful to consider everything.
     While nausea is often called a CHF symptom, throwing up is not a "normal" part of heart failure. It may be caused by a medication or by another condition or by changes in diet or who knows what else, but if I were constantly throwing up, I would be riding my doctors like a pit bull on a toy poodle until they nailed down the cause and got it corrected. Keeping a written diary of when symptoms occur, what is happening at the same time with activity, diet, fluids and so on, how long symptoms last, etc,..., can be the best way to nail down true causes for many symptoms.
     Remember that meds can be taken together or apart, at the same time or at different times. Sometimes people react to taking certain meds at certain times of the day, with or without food, or together with another med. Play with the pill-taking schedule. Just be sure to take them all the proper number of times each day. Jon.

Jon's March 9 reply to Susan's March 9, 2001 - Hi Susan, As a guy who quit smoking after getting CHF, I can testify that smoker's cough can take up to 6 months to disappear after quitting cold turkey. That may not be the case for your husband, but it is one possibility. I know very little about COPD or diabetes but be sure not to discount either as a possible source of serious cough.
     Serious chronic cough can be a part of CHF but it is not really a common affliction. If he retains a lot of fluid in his lungs, he is likely to experience this more often, and worse. If his lips are turning blue, I would be talking to his pulmonologist as well as his CHFspecialist to see how to increase his oxygen supply. He might need help at night via CPAP as well as oxygen during the day.
     I sure hope others post because I really don't have any answers for you, just these general comments. Sorry, Jon.

Bill D's March 10 reply to Susan's March 9, 2001 - Hi Susan, The docs will tell you if he's dying. You should ask them. I know that's hard to do. If they think he's dying in 6 months you should look at Hospice programs so he could die at home with his loved ones around him. On the other hand, the docs might say, "One more change in his medications and he'll be alright!" Bill D.

Davida S' March 13 reply to Susan's March 9, 2001 - Hi Susan, I recommend a chest x-ray as soon as possible. It could be anything and I don't want to worry you with guesses. If the x-rays come back clear, it's just a matter of the doctors working with managing his heart disease. Please call the doctors first thing and request a chest x-ray and don't take no for an answer. If it means going through the emergency room with shortness of breath, go. The doctors are assuming it's his heart. Heart failure can mimic other diseases but doctors overlook other things, blaming everything on the heart. I lost my mother on such an assumption. Take care.

Mol, March 13, 2001 - Hi, I have a relative who suffered manic depression while on Coreg. If anyone has a relative or knows someone who suffered this as a side effect, please e-mail me . If you have any ideas on how to research this, please let me know. Thanks.

Davida S' 3-13 reply to Marv B's March 9, 2001 - Hi Marv, H have your daughter space her meds and take food with each med, either a full meal breakfast, lunch or dinner, or snacks in between meals. I agree with Jon on taking pills that may interfere with each other. My husband does not take any pills together. Altogether he has 4 different meds plus aspirin, vitamins, and coenzyme q10 so he takes major meds 2 hours apart and the others one hour apart. That's 3 meals and 4 light snacks, fruit or snack cakes. He takes nothing at all on an empty stomach. He does this because he has a sensitive stomach and has had trouble in the past with acid reflux.

Roxanne, March 13, 2001 - Hi, How wonderful that this courageous group of people can share and learn! I'm just a heartbroken surviving relative, so perhaps I'm in the wrong place. My completely healthy, asymptomatic, 49 year old brother died of dilated cardiomyopathy last year. The family would like to to find a lab that could test the autopsy specimens to determine if the cause was viral. Any suggestions? Thank you!

Sharon, March 13, 2001 - Hello to all, I have not been able to find a CHF specialist for my husband yet so I have decided to go to a cardiologist. He does have an appointment in May to see the cardiologist at the Veterans' Administration but I have lost all confidence in that place. The trick will be to get my husband to go to an appointment I set up with someone in our area here. He does not like docs and I don't think he really wants to hear what they have to say. I just hope and pray that everything will be alright. I wish everyone great health and happiness, Sharon.

Susan, March 13, 2001 - Hi, Thank you guys for your comments. He had a chest x-ray by the pulmonologist and he does have fluid in his lungs again. He is using oxygen while sleeping; actually he has it on almost all the time now. His coughing is still there. He sees his cardiologist tomorrow because the swelling in his feet and legs is back and getting worse. He had an 8 lb weight gain in one night. They increased his Lasix but after 4 days he had lost 4 lbs and the swelling was still there. I asked his PCP yesterday if he was ever going to get better and he said, "No, only worse." That is the first time I have gotten a direct answer on that question. John has a list for the cardiologist and on the list is the question, "Am I going to die sooner than later?" I don't know if they will answer or not but I certainly admire his courage in asking. What neither one of us understands is how he could get so bad so fast. Thank you Jon, for this web site. It is wonderful.

Vicki, March 15, 2001 - Hi, My husband has been doing really well until this week. He has lost his sense of taste and says eveything tastes like cardboard. We have cut way back on salt but now even things that do not naturally have much salt are tasteless to him. I am using all kinds of other seasonings but he can't even taste those. Could it be the medicine? He is taking Captopril and furosemide. Has any oneelse had this problem? Thank you for any suggestions. This site has been such a godsend to us!

Jon's March 15 reply to Vicki's March 15, 2001 - Hi, A quick search of The Archives turned up posts about loss of taste here and here. I only searched for the one word, "taste" so a better thought out search would probably turn up more. Be sure to follow up the replies to these posts. Hopefully, others will answer as well. Jon.

Annie G's March 15 reply to Vicki's March 15, 2001 - Hi Vicki, How does the food taste to you? Go on the no sodium, or low, low sodium regimen with him. It'll give you a sense of whether or not his food really does have no taste or not. Also, if your husband recently quit smoking his taste buds may take a bit to re-awaken. All our food tasted like cardboard for about 3 months until we got used to it. I also learned to pretty well double all spices called for in a recipe and to buy all new (fresh) spices. It makes a big difference. Of course, it may not just be salt withdrawal. Maybe someone else knows regarding the meds he is on.

Annie G's March 16 reply to Susan's March 13, 2001 - Hi, When my husband first got sick we got oxygen for him at home while we were waiting to see the CHF-transplant specialists for the first time. I asked about home oxygen once they got him straightened around and we were told, "If he's short of breath enough to need oxygen then we need to see him because his meds need adjusting." I'm not sure if it's true for everyone, but his EF was 13% and he was in rough shape. He hasn't needed oxygen since then.
     I always remember that if he's SOB something needs changing and not to put up with it. Everyone doesn't read x-rays equally well, as you have learned. Does your husband see a CHF specialist? Cardiac surgeons are not a substitute, nor are general cardiologists. They generally don't look at things the same way a CHF specialist does. Their focus really is different. Also, the first doctor told my husband to contact people important to him to say goodbye and that was 2½ years ago, so get a good doctor. It will extend and improve his life.

Nadine's March 16 reply to Vicki's March 15, 2001 - Hi, I don't know much about all these meds our husbands are on but I have met a few people who have had closed head injuries and have had a total loss of their sense of taste. I assume any type of specific neural damage in the centers that control these senses in the brain would create a loss of the senses of smell or taste (most likely smell). Check out if it is actually taste or if he has trouble smelling as well.
     My point is that if he has had any recent episode of oxygen deprivation or possibly a small, localized stroke, it could potentially affect taste or smell. I would get it checked out since anyone anticoagulated could suffer a small bleed which could be defined as a stroke. This is just a theory that crossed my mind. I don't have any specific experience or research that supports this, other than general knowledge about strokes and brain anatomy. Strokes can be caused by bleeding or by small clots lodged in blood vessels, so anyone with CHF is likely at some risk for strokes, which can be major, life changing events, or small, barely noticeable events. Anyway, that was my impression when I read the post.

Walter K's March 16 reply to Vicki's March 15, 2001 - Hi Vicki, Last Fall I became aware my sense of taste was going awry. This was followed by the development of a really revolting taste. Everything started tasting like spoiled garbage or worse. I was on 50mg of Prinivil, an ACE inhibitor, daily at the time, plus other meds. I mentioned this problem during a visit to my CHF specialist. Both she and her nurse said it was probably due to the Prinivil and that all ACE inhibitors can cause taste problems in a minority of people. Captopril is also an ACE inhibitor. The CHF specialist imediately took me off the Prinivil and replaced it with Toprol XL (metoprolol), which is an beta-blocker. She said it would not cause the taste problem but that it would take a month for it to go away. It took 6 weeks or more but it did get much better. I don't think my taste is normal yet but at least things are tolerable. So I suggest you ask the doc about the captopril as a cause of the problem.
     Note to Jon - I posted on this at the time but just now searched The Archives under taste and under Walter K and could not find my posts. It was probably towards the end of last year. I seem to remember you were having site problems then. Did some posts not get into The Archives or is there a search engine problem?

Jon's March 16 reply to Walter K's March 16, 2001 - Hi Walter, A quick search turned up your post at (let it load). I'm not sure why it didn't turn up in your search. I must confess that a lot of my answers come from info on my own site that I searched for with the site search engine. <g> Jon.

Susan W, March 17, 2001 - Hi, I've only posted once before (in January) but received a few really nice e-mails in response so I thought I'd let everyone know that my mother died on Monday, August 12th during heart bypass and mitral valve replacement surgery. She was my best friend in the world and will be missed every day for the rest of my life.
     Thank you all for your support. I wish continued or improved health to all of your loved ones with CHF.

Jack, March 17, 2001 - Hi, Giving up salt is hard but there is a replacement. Durkees calls it "sour salt" but it is actually citric acid crystals. It looks like salt, it sprinkles like salt, and if you don't use too much it bites your tongue and starts the saliva flowing just like salt; But it's not salt! It really stimulates the taste buds. Try it!

Dega, March 17, 2001 - Hi, It's been quite awhile since I've been here but I have checked in to see the messages. The update on my husband is that last September he was diagnosed with diabetes and is on insulin and meds for it. He also has heart disease and had a quadruple bypass. We just found out last spring that one of his bypasses didn't take, on one major artery which had a mammary graft. That blockage is 50%. Over the last few months, while dealing with insulin levels, I notice that he is getting weaker and can't even get out of the house anymore. He now complains about not being able to breathe every night now. He is on 12mg of Coreg and is on Coumadin, Zesteril, Lanoxin, and more.
     Is there no turn around or does he just fail more? We live hour by hour. Thanks for listening.

MaryLou L's March 19 reply to Vicki's March 15, 2001 - Hi Vicki, I don't take the same meds your husband does and my problem differs from his but it does have to do with taste. Everything tastes nasty to me, so much so that I'm always asking my husband if the meal tastes all right to him, and it does. I think it must be due to some of the meds we take and not just the omission of salt. Spices don't enhance the flavor for me either. It's just nasty food with spices added. <g> Mary Lou.

Jill, March 19, 2001 - Hi, I am venting rather than posting a question. Maybe someone else out there has run into the same thing. My Dad, who presently lives 1500 miles away, was diagnosed with pneumonia this morning. He has end-stage CHF with an EF of 10%. We call him the miracle man because he has had 7 surgical procedures since June 9, 2000. These include a total knee replacement, mitral valve repair, single bypass (the other 4 vessels were too badly damaged from silent heart attacks, 4 GI procedures due to bleeding ulcers including one from Coumadin, and finally a punctured lung from a thoracentesis. He has also had 3 TIAs, the most recent and most severe less than a month ago.
     What has me so upset right now is that the cardiologist diagnosed his pneumonia from a chest x-ray this morning. He never even saw him, he simply read the x-ray and sent his assistant out with a prescription for Levaquin. He's 80 years old. It's almost like they don't care at all about older patients. They didn't give Mom (also 80) any instructions about the drug, no interaction info. When you search the Web for info on the drug all these nightmare stories come up. I called Ortho and they said that caution needs to be taken when prescribing this drug for people on amiodarone and to watch potassium levels, etc. Do any of you ever feel like the doctors just don't care? It's such a helpless feeling! Enough said,.... Jill.

Paula, March 22, 2001 - Hi everyone, I have a 3 year old son named Anthony who has DCM and CHF. He is going in on Wednesday for a cath. I am very nervous. Can you please keep Anthony in your prayers? We are hoping for good news. Thanks, Paula.

Suzy C's March 23 reply to Jill's March 19, 2001 - Hi Jill, Venting is allowed. ;-) This is a frustrating thing to deal with. As for Lequavin, it's a powerful antibiotic used mostly for pneumonia and it works quickly. Most doctors have the "god syndrome." Some of my best friends for years are doctors and they recognize that many of their peers do just what you said: diagnose, prescribe, and treat, with little interaction with their patients. You just have to find a good one. We've been lucky in that respect.

Robert J's March 24 reply to Paula's March 22, 2001 - Hello Paula, If you will let me know what time Wednesday Anthony is going to have his cath I will be praying for him. If you don't know what time, then I will keep him in my prayers all through the day on Wednesday. You can post here or send e-mail. With love, Robert J.

Paula's March 24 reply to Robert J's March 24, 2001 - Dear Robert, His cath will be done at 7:00 AM Wednesday. Thank you so much for the prayers. I do appreciate it. I hope that maybe his EF will change. Anthony's EF has been 11% since his diagnosis one year and 9 months ago but he has been taking Coreg for the last 11 months so we are hoping there will be some kind of change for the better. Thank you, Paula.

Susan, March 26, 2001 - Well, we finally have solved the mystery of my husband's cough. and it isn't good. He has been diagnosed with small cell lung cancer in stage 4. It has also migrated to his liver. He is in the hospital now and receiving his first course of chemo. This will only help him stay alive a little longer because this kind of cancer is terminal. His heart is doing fine according to the doctors. All his recent symptoms were not related to his heart but to the cancer. They just didn't detect it because all they were looking for were heart complications. This proves one thing to me and that is that you can never give up pushing physicians to continue to look for something if you are not satisfied with their answers. I just wish they had found it sooner. Thank you all for you concern and e-mails.

Julie G's March 28 reply to Susan's March 26, 2001 - Hi Susan, I will be praying for you and your husband. You be sure to take care of yourself. Get plenty of rest so you can keep your strength up.

Martha, March 28, 2001 - Hi, My mother got out of the hospital after being diagnosed with CHF on Friday. Her pulse-ox was 81 and they did an x-ray and found that there was fluid half way up her lungs. She spent 5 days in the hospital where they put her on Lasix and several other things. They did an echo and found that she has diastolic distress which they say is the best one to have because it is not as life threatening as the other one. She is on Verapamil and another one that starts with a P, as well as Lasix and potassium. We brought her home last night. Her oxygen is set at 3 liters per hour at rest and 5 when active.
     My question is, can any of those medicines cause episodes of disorientation, confusion and even paranoia? She woke up this morning in a home she has been in for almost 50 years and she would not keep her oxygen on, believed that my whole family was in some conspiracy against her, and that people were trying to hurt her. It seemed to have passed after my father gave her some more of her medicine. Please, please help!

Todd, March 29, 2001 - Hi, Does confusion, disorientation, and paranoia all come with end-stage CHF? Or do the meds have something to do with it? My dad takes Demadex, Lanoxin, Cozaar, Coumadin, and has a Primacor treatment once a week. He can't sleep at night so his doctor is trying different types of sleep aids to no avail. Thank you, Todd.

Steff, March 31, 2001 - Hi, My name is Steff and I'm new here. My husband Jeff - I know,I know, Jeff and Steff <lol> - is a 38 year old who has had problems with fluid buildup in his lungs, heart sac, and belly, ankles, and legs since his tricuspid valve replacement in December. He had that same valve replaced at age 33.
     Since his last surgery on December 12, 2000, he has been in the hospital with dangerous fluid buildup for about a month. It seems like after he gets out of the hospital and off IV Lasix and he starts taking oral Lasix again, he gets fluid buildup fast. They never release him without some fluid in his lungs and around his heart sac because he might be there a long time. Are there other other oral diuretics he can take besides Lasix? has anyone found anything better for their loved one?
     We do all the right things at home and he only drinks about a liter of fluid a day. Here's an example of my frustration: He was released from the hospital Monday. He did blood outpatient at his regular PCP's Tuesday. They had him on 400mg Lasix a day after his release. He is normally on 160mg a day. Well, he was really releasing the water soooo well with this higher dose (if you get my gist) and then his doc called and said go back to regular doses as his creatinine levels were sky high. Yikes! The only organ in his body that seems to be functioning well - his kidneys - will shut down soon if his creatinine levels aren't dropped and his Lasix severely reduced. So it seems like we're in a lose-lose situation: A lot of Lasix works but messes up his kidneys and the amount he takes now is not cutting it. Do you have any hints or advice for us? I hope this made sense. Thanks to Brenda for sending me to this site, Steff.

Bill D's March 31 reply to Martha's March 28, 2001 - Hi Martha, If you'll read those medicines, copy them down, and tell us, we will look them up for you as to the side effects. Don't forget to tell us the dose. Many people get paranoid when they are very sick. I called 911 when I was in the hospital! Bill D.

Peggy, March 31, 2001 - Hi, My husband has DCM and CHF. He's taking Coreg, Lanoxin, Prinivil, and Pravachol. He has been having diarrhea whenever he eats his meals. All of his medications have the side effect of this. We have changed his diet without success and neither his doctor nor us want him to go without any of his meds. He's also taking a multi-vitamin, CoQ-10, selenium, magnesium, calcium, vitamin E and a few vitamin C. Do you have any suggestions or have you been through this? This is affecting our daily life.
Jon's note: First, try either taking the magnesium at bedtime - no more than 400mg - or stop taking it and see what happens

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