The paperwork never ends The Archives
Loved Ones - February, 2004 Archive Index

Diane 2-8     need some answers
Davida S' 2-8 reply to Tim's 1-20     maybe counseling would help
Davida S' 2-8 reply to Terry O's 1-20     getting him to a doctor
Rosemarie 2-8     Frank died
Lisa 2-9     TEE and Coreg info
Barbara 2-9     really could use some suggestions & more
Marsha H's 2-10 reply to Barbara's 2-9     coping, supporting & more
Davida S' 2-10 reply to Barbara's 2-9     coping, supporting & more
Barbara's 2-11 reply to Davida's 2-10     thank you & more
Davida S' 2-13 reply to Barbara's 2-11     that's a tough call
Paul 2-13     seek info on EF variations
Jon's 2-13 reply to Paul's 2-13     EF variations
Paul's 2-14 reply to Jon's 2-13     EF variations
Elizabeth 2-14     could sure use something
Davida S' 2-18 reply to Paul's 2-13     going back to work too soon
Barbara's 2-18 reply to Elizabeth's 2-14     in a similar situation
Elizabeth's 2-18 reply to Jon's 2-14     will keep you posted
Elizabeth's 2-19 reply to Barbara's 2-18     update, this support is appreciated
Amy 2-19     need tips on getting her to go low sodium
Elizabeth's 2-20 reply to Susan B's 1-27     do CHFers know their meds? & more
Davida S' 2-22 reply to Amy's 2-19     reducing salt in the diet
Jon's 2-22 reply to Davida S' 2-22     question about Salt Sense
Susan B's 2-22 reply to Elizabeth's 2-20     gettting CHFers better
Susan B 2-23     a little more info
M Bishop 2-23     thanks for the board
Davida S' 2-23 reply to Jon's 2-22     Salt Sense & potassium chloride
Jon's 2-23 reply to Davida S' 2-23     salt substitutes & potassium chloride
Elizabeth's 2-23 reply to Susan B's 2-22     different approaches
Sandy's 2-24 reply to Jon's 2-23     throwing out the salt
Susan B's 2-24 reply to Elizabeth's 2-23     different approaches
Elizabeth's 2-25 reply to Susan B's 2-24     different approaches
Elizabeth's 2-25 reply to Barbara's 2-18     falling asleep easily
Carol 2-25     being the non-sick one can be very hard
Bhree R 2-25     have some treatment questions
Davida S' 2-26 reply to Bhree R's 2-25     Coreg not for everyone & more
Susan B's 2-26 reply to Elizabeth's 2-25     sleeping healthy & having a plan
Susan B's 2-26 reply to Bhree R's 2-25     try a second opinion & more
Lena 2-26     thanks
Susan B's 2-27 reply to Jon's 2-26     the right doctor is critical
Elizabeth's 2-27 reply to Susan B's 2-26     sleep, exercise and more

Diane, February 8, 2004 - Hi, My mother-in-law is suffering from CHF. She is 93+ and does not want to go to the hospital. She has been gaining about 2 pounds a day for the past 10 days. She has been taking Lasix and it is at the dose that can be taken by her because of her heart. She had a minor heart attack last month. She is doing much worse every day. She does have oxygen at the house. I have a few questions.
Does the severe congestion and swelling cause other organs to shut down? Today, her speech was a little slurred - can this swelling or distress also cause strokes? We don't know what to look for towards the end - we want to make sure that she is comfortable but she will not stay in her hospital bed.
     Do you have any input for me? Thanks. Diane.
Jon's note: Is she on a low sodium diet?

Davida S' February 8 reply to Tim's January 20, 2004 - Hi Tim, It sounds like something else is going on here. That does not make any sense. Your description of your wife's health makes me think she is pretty healthy for the most part, meaning her CHF is controlled very well. You may want to sit down and have a heart to heart with her and see if there is something else on her mind. She wants to leave with an EF of 50%, but stayed when her EF was lower? Maybe you two can see a counselor together to get to the bottom of things.

Davida S' February 8 reply to Terry O's January 20, 2004 - Hi Terry, Keep an eye on him and jump the first chance you get to call 911 or visit a doctor. If you ever get him back to a hospital or doctor's office, please take over and share your concerns with the doctor's and insist on every possible heart test there is. He can't keep going on like this. Sooner or later you will have no choice but to call 911 or get him to his doctor. It's so hard to get someone to go to the doctor who does not want to go.

Rosemarie, February 8, 2004 - Dear Jon and everyone who has responded to me through this site for the past couple of years, it is with great sadness that I write to tell you that my precious Frank died on 20 January. On New Year's Eve, one of our priests came to visit him and he said that he was ready to go now and just wanted peace and asked him if he would preach at his funeral.
     Looking back, we have experienced something unusual these days in respecting Frank's adamant request not to go to hospital. The day or so that he spent in ICU at the end of November were purgatory for him as he really hated being confined to a narrow bed and connected to all kinds of monitors and tubes, etc.
     After Christmas he agreed that it would be a good idea to have oxygen at home although he used it very little at that stage. From New Year's Eve on, he had a hard struggle and about 10 days or so before he died he decided to stop taking his medication, a decision he had made long before - to do if he got really bad. H e was continuing to retain fluid despite being on 400mg of furosemide a day as well as spiractin.
     On Sunday 18 January we called in a doctor who fitted a catheter as we could no longer get him to the bathroom. The day after that, the doctor started him on morphine and hospice came. We had a bad night on the Monday and Tuesday was my birthday. Frank had been semiconscious and not talking since Sunday but I told him that I had asked God for a birthday gift of his peace. He slipped away just before 7:00 PM that evening.
     I was sitting on the end of the bed watching him all the time while chatting with my son and daughter-in-law and suddenly I noticed a change in his breathing. I shot around to the head of the bed and said, "He's going" as he slipped into the next world. Shortly afterward the last candle that I had been burning for him in the fireplace in the lounge went out.
     He was a very special man who touched many lives in his gentle quiet way. He had a deep faith and in his last weeks he gave and received love in a special way which we will all remember. Jon, thank you for your suggestion for Frank to see another specialist. In this part of South Africa we have cardiologists and cardiothoracic surgeons but that's really where speciality ends. I am not aware of CHF specialists here.

Lisa, February 9, 2004 - Hi everyone, I haven't posted for awhile, but wanted to let you know that my dad, age 74, had a successful cardioversion on Friday. He also had a transesophageal electrocardiogram (TEE) which showed no blood clots. The doctors titrated his Coreg up to 6.25mg twice a day from 3.125mg twice a day. The cardiologist explained to us that patients really do not see much benefit from Coreg until they are on at least 12.5mg per day. Once that is reached, EF can begin to improve and some patients feel noticeably better. I just thought I would pass along the info I received and if anyone has those procedures coming up, feel free to talk with me about them. Take good care!

Barbara, February 9, 2004 - Hi, My husband has CHF, COPD, CAD and something wrong with his bladder/prostate. He was hospitalized last week because his heart was in a-fib when his lung doc was doing a routine EKG. The lung doc told us if he didn't stop smoking, he probably wouldn't live more than a few weeks, if not days and the heart doc agreed.
     He has gotten progressively weaker since being discharged from the hospital and he started smoking before we were out of the hospital parking lot. He has worsened so much over the weekend he has to stop and rest between rooms at our house.
     Do you think this is his heart or a combination of heart and lungs and bladder/prostate (the urologist said this problem could be a tumor)? I am about at my wit's end. I work and he is home alone for most of every day. Can you give me some recommendations as to treatment? The doctors don't seem to think anything is going to help. Or can you tell me something I can do at home? Thanks.

Marsha's February 10 reply to Barbara's February 9, 2004 - Hi, The quality of life for us depends on several things: Our condition when we first seek treatment, the quality of professional care we receive, and how me manage our care when we are home. The precise effect of each of those factors is highly individual, but in general how we manage our care at home is crucial.
     Your husband has chosen to not change the one most critical factor in his life (his smoking) so nothing you do will probably make any appreciable difference for him. I suspect that what he needs most now is your love and moral support, for you to respect his choice as his alone, and help to prepare for what is to come. Either he has come to terms with his future as the doctors painted it, or he is in denial.
     Either way, what he needs most is your love. May God bless you both.

Davida S' February 10 reply to Barbara's February 9, 2004 - Hi, The doctors are best and their predictions is manifesting itself at this point. If your husband didn't believe the doctors initially, he should if he is stopping to rest from room to room. His problem sounds like a big part of it is both heart and lungs. I don't think the prostate is the major cause of this - it is heart and lungs from my point of view.
     Unfortunately you need to find peace with this. Your husband does not seem concerned. He has to feel sick and through all this sickness, he is still reaching for a cigarette. What can you do? Just be at your wit's end.
     The doctor's know best, please try and reason with your husband. If there is no reasoning, you should - like I said earlier - find peace with his decisons. It is not easy, I know, but there is nothing else you can do. Pray for guidance and try and have a heart to heart with your husband.

Barbara's February 11 reply to Davida's February 10, 2004 - Hi, Thank you and Marsha both for replying to my post. I had come to the same decision that you both suggested in that I can do nothing but honor the decision he has made. Some of his relatives were with him last night when I got home from work. I told him I had forgotten his cigarettes and I would go back out later to get them. One of the visitors said I shouldn't go get any for him but I told him that he had made the decision to continue smoking and I would accept that as his decision. Since he isn't able to go out to get cigarettes, I will have to get them for him. He is really bad today, with color gray tone and so weak that taking his bath left him having to hold to furniture and rest periodically just to get from bedroom to couch. Again, thanks for your replies.

Davida S' February 13 reply to Barbara's February 11, 2004 - Wow Barbara, That's a different story when you are the dealer honoring his wishes. I am not sure if I could contribute to his deterioration. That is a very tough call but if you feel you should, I truly understand. His condition sounds scary and I would want to do something to make him feel better, but like I said, it's difficult and if this is your way of making peace I really do understand.

Paul, February 13, 2004 - Hi, I want to thank Jon and the rest of you for the information on this site. My wife had an incident of sudden cardiac death 14 months ago and luckily survived. She clearly has CHF and treatment by her cardiologists has been marginal until now. She was put on long-term disability in August of 2003 because her ejection fraction was 30%. The first cardiologist did not even put her on Coreg.
     After a few months of Coreg, her ejection fraction was up to 40% in December of 2003 so she was taken off the disability program. She tried going back to work half-time but even that is too much. We followed the advice on this board and found a local CHF specialist and clinic. She had her first visit today and spent 3 hours with interviews and tests, after which they told her that her ejection fraction is about 20%, not 40%.
     My question is this: Is it normal for ejection fraction to vary so much? If not, what would explain these results? Thanks in advance.

Jon's February 13 reply to Paul's February 13, 2004 - Hi Paul, Most CHFers that come through here do believe EF varies pretty much constantly. There is no medical evidence to contradict this. Another consideration is the test used to make the measurement. Cath is most accurate, followed by MUGA, followed by echo. Another consideration is whether or not she was "in" CHF at the time of measurement. Many things can trigger an "acute CHF episode" and during one, we feel worse and our EF is undoubtedly lower. Finally, keep in mind that echo results are interpreted by a cardiologist, and not all doctors will interpret the same test results the same way. See the article at the bottom of the echo page for more on that. Jon.

Paul's February 14 reply to Jon's February 13, 2004 - Thanks, Jon. She was having one of the "bad days" and has been exhausted from trying to work. The 40% was when she was able to nap every afternoon and was doing pretty well. It gives us some comfort in that the drop may be temporary as I interpret your information.

Elizabeth, February 14, 2004 - Hi, My husband had a massive cardiac arrest (and a few mini-strokes) 4 years ago. He made a great comeback, but this year (since November) has been a nightmare. He started out with pneumonia, a urinary tract infection, a sinus infection and shingles.
     Now, he is still congested and wheezing. Antibiotics don't seem to be helping. He had an echocardiogram 4 weeks ago and his heart looked good in that, but the internist keeps muttering about congestive heart failure. My husband Bruce, has next to no energy. It's getting to the point where he can fall asleep after eating breakfast. At this point, I'm about to snap.
     He has an appointment with the cardiologist this Wednesday but I know so little about this phase that I don't know if the doctor can determine if it is CHF or what. Any help - suggestions, comments, words of sanity, would be greatly appreciated. Thanks, Elizabeth.
Jon's note: A BNP test will tell you right away.

Davida S' February 18 reply to Paul's February 13, 2004 - Hi Paul, I am wondering what sort of disability she was taken off with a 40% EF. I hope it was a work-related disability. If it was Social Security Disability I am wondering who reported the change to them. I would not trust 40% as better unless it was consistant for months on end, if not for at least a year. If her EF has dropped, I would suggest she get her disability back and keep it until her EF is consistent.
     My experience says she went back to work way too soon. That EF of 40% indicates her heart function was improving and was on a healing path, but then she threw it back to work way too soon. I truly believe my husband's successful recovery was about not being forced back to work until his EF was in normal ranges for over a year. He started off with an EF under 10% and it is now 55% to 60% for his last test. That made 3 echoes over 18 months within normal range.
     Being forced back to work is the worst thing on a heart patient. The numbers don't always tell the true picture. When my husband had an EF of 40% you could still see the declination of his health. I would have never sent him back to work if I had any say-so. Luckily, he was on SSD and we had that flexibility of not being forced back to work. They just did an audit after 3 years, and we knew when they audited him he would have to go back to work. During the 3 years he was on SSD he did all the things a heart patient should do for hopeful results, and he went to school to learn a new trade. He was in school for 2 years. He got a great job a month before they cut him off.

Barbara's February 18 reply to Elizabeth's February 14, 2004 - Hi Elizabeth, I can certainly relate to you at this time. My husband is in about the same shape. Some days he can fall asleep sitting up watching television. He has also started having to stop between rooms to rest. This doesn't happen every day but 2 or 3 days a week. One doctor told me that the falling asleep could be that his oxygen level is dropping or from the way his body was metabolizing his pain medication.
     Let us know what the cardiologist says about him and maybe I can apply it to my husband. Unfortunately, mine also has COPD so his lungs are as big an issue as the heart.

Elizabeth's February 18 reply to Jon's February 14, 2004 - Thanks, Jon. The appointment with the cardiologist is today and I will ask about the BNP test. I'll keep you posted as it's nice to finally have others to talk to!

Elizabeth's February 19 reply to Barbara's February 18, 2004 - Hi Barbara, Things actually went well at the cardiologist's. The doctor noticed that Bruce's wheezing was sort of backwards. Instead of wheezing when he exhaled, it was happening the when he inhaled--or vice-versa--I'm so confused. The cardiologist thought that Bruce's heart and lungs were fine but that he still lacking 25% of his normal energy. He gets tired after shaving so this is definitely true!
     Bruce will see an Ear-Nose-Throat doctor to see if any of the infections affected his trachea. He's also going to have the BNP test today. I'll keep you posted. I'm glad that I'm not alone with all of this. This web site is a big help for me.

Amy, February 19, 2004 - Hello, This is my first time to this web site and I hope I can get some helpful tips on CHF. My husband and I are the caregiver to his grandmother, and she was just diagnosed with CHF. She has been a diabetic for at least 30 years now and never followed the diet for a diabetic. She has also been obese most of her life.
     I was hoping you could give us some advice on how to get her on the low sodium diet. She is an absolute salt lover - she uses it on everything. We are just very concerned that this could be her last card dealt. Please help us with whatever you can. Thank you for your time.

Elizabeth's February 20 reply to Susan B's January 27, 2004 - Hi, Bruce had the BNP test and the blood tests for electrolytes on Thursday so we should know the results on Monday.
     I read your reply to Terry and it was great but here's another for you or someone else to figure out. While Bruce will go to the various doctors, he takes almost no interest in what is said and takes his numerous medications without really knowing what each is for. Is this fairly typical or am I just feeling as if it's all on my shoulders?
     I'm so relieved to have all of you to speak with - you really help.

Davida S' February 22 reply to Amy's February 19, 2004 - Hi Amy, First of all, get rid of all regular salt in shakers and boxes. Pour it out and keep the salt box. Buy Salt Sense by Diamond Crystal (comes in a blue and white container). It is real salt with less sodium and all major food markets have it. Next, pour it in the old salt container box and the salt shakers. You cook with it; I do and it tastes all the same.
     The other thing is, if you are preparing her meals, you control the salt in the prepared food. Do not add salt, not even Salt Sense. Let her add it at the table from the shaker - the one with the Salt Sense in it. This way she sprinkles it on top and it is not throughout the entire meal. Buy No Salt Added canned veggies, or frozen or fresh. Buy Mrs. Dash and cook with that instead of salt.
     You all will also have to go salt-free so that everyone eats out of the same pot. Salt Sense taste just like salt because it is salt. She should not eat any prepared foods from boxes. They have a lot of salt.

Jon's February 22 reply to Davida S' February 22, 2004 - Hi, I get an error message when clicking Diamond Crystal's Salt Sense link online. Does the product contain potassium chloride? Jon.

Susan B's February 22 reply to Elisabeth's February 20, 2004 - Hello Elizabeth, Does he take his meds and follow his "plan?" If so, who cares if he understands, as long as he is doing what he needs to do to be as healthy as possible. My husband could not tell you why he is on most of the meds, but he weighs every day and writes it on his chart, takes his meds, and follows his "plan." If you are willing to do the reading and stay on top of the doctors, then I would do it. My husband does not want to take an active role in understanding CHF. He rarely reads anything here - only if I get him to read posts with me. So what, I stay on top of this side of things. Pick your battles.
     One of you will need to stay on top of the doctors and the research. I strongly believe that my husband would not be doing as well if I had not found this site. We would not have the wonderful doctor we now have. I had to stop working to get treatment for my husband.
     I have written this before but it has been awhile so I will post it again. My husband's oxygen level was down to 81% when he was walking. The doctors and insurance company took days to do anything about it. My husband did not understand when the doctor told him that he needed oxygen. George, my husband, was blue and short of breath but still the doctor did not tell him not to go to work. My husband went to work, blue and short of breath.
     He would have continued to work that way if I had not begged him to go home and stop running around. His oxygen level was over 90% when he was at rest. I had to beg the union rep and the city (his employer) to get this corrected. As I am a small business owner, I had to close down my office to get my husband treatment.
     My husband has had CHF from DCM for over 3 years. He is just now accepting it. However, he fights every day to be better. I see it and I am so proud of him. He is doing very well. His EF is up to 50 to 60% for the last year. He has not been in Club Med for over one year. We still have trips to the ER but for nose bleeds, from the CHF meds and his gout meds. That's a long story for another day.
     I hope this helps. Thanks Jon, as always. You all are in my prayers. Susan B.

Susan B, February 23, 2004 - Hi all, As I re-read my last post, I think I need to add just a little more. My business is still up and going most of the time. I had to throw 3 clients out of the office to take my husband to the doctor one night, but most of the time I work 6 days a week. I have had to hire more people to help take the workload. I have turned away business that did not allow me to be flexible enough to help with my husband's illness.
     I am so blessed because my friends have all pitched in and covered for me to handle business that I could not do because of illness. I thank God every day for my friends and family. My business could not have survived without outside (often unpaid) help from many people. Even though my husband is doing well, I still try to keep my schedule as flexible as possible for days like today when he is not feeling well. It is just a short leap from not feeling well to needing to go to the ER for him even now. I never forget it.
     Thanks for letting me clear up any misunderstanding there may be in my first post. I know how lucky I am to have great support. I hope everyone here has the same kind of support. Susan B.

M Bishop, February 23, 2004 - Hi, Thanks so much for this site. My grandmother was diagnosed with CHF in November, 2003. It has sometimes been an uphill battle. I think it wil be a great recovery but sometimes I think the worst. Well, she goes back this week for another checkup. She still thinks she is 20 years old. She needs to learn how to manage with CHF and to just take life easy. Thanks so much for the board. M. Bishop.

Davida S' February 23 reply to Jon's February 22 , 2004 - Hi Jon, I checked and there is no potassium chloride in Salt Sense. Here is the ingredient list from the box: Salt, silicon dioxide, tricalcium phosphate, sodium bicarbonate, dextrose and potassim iodide 0.006%. I cook with it and don't add any more than the recipe requires. On breakfast I sprinkle it from the salt shaker as I would do any salt shaker adding no more and really still trying to use a light hand. Are there concerns about potassium chloride? Salt sense does not have any of this in it. Let me know your thougths on the potassium chloride.

Jon's February 23 reply to Davida S' February 23, 2004 - Hi, Potassium chloride can skew electrolyte balance, not a good thing when you take slow-release potassium like most of us do to offset diuretic use.
     On Salt Sense, I can only speak about CHFers, not their families. <g> In my personal opinion, it is better to eliminate the salt shaker and any direct salt substitutes entirely, changing your palate over time. This makes it easier to stay truly low sodium.
     Salt Sense seems to me like using Icelandic salt - it's still salt - even if less potent by volume. Using salt in any direct way encourages me to desire more salt. Personally, I prefer a clean break with the "pain" of dropping the salt habit entirely, followed by no desire for the stuff. A little of something I am not supposed to have always makes me want more! ;-)
     I use zero salt when cooking and use no direct salt substitutes cooking or at the table, and my whole family has adapted to this wonderfully over time. Jon.

Elizabeth's February 23 reply to Susan B's February 22, 2004 - Hi Susan, I know that you're right about choosing one's battles carefully. This has a lot to do with our personalities, I suppose. I am my own best advocate in all things medical and want to know why I'm taking what medications. Bruce leaves all the "technicalities" to me, from making appointments to refilling meds, to making sure that they're taken. He seems to have taken a back seat to his own health. He really doesn't have a plan, aside from getting to the next day - half the battle, I guess.
     Finding this site is most helpful to me as well. I wouldn't have known about the BNP test or, quite honestly, that there were so many in the same boat.

Sandy's February 24 reply to Jon's February 23, 2004 - Hi Jon, We have done the same thing - just thrown the salt shaker away. Generally we rely on spices, mostly garlic. Even minced fresh garlic added to boiling pasta will replace the "required" salt! :-) Sandy.

Susan B's February 24 reply to Elizabeth's February 23, 2004 - Hello Elizabeth, It sounds like you do the planning in your relationship. Just because your husband is ill does not mean that everything is going to change. You are right, personalities play a big role on how y'all handle this. My husband has told me that he does not aways want to hear the full truth right away. He lives in the land of denial and is quite happy there. As I have said before, I have decided to let him live there as long as he follows the plan for his treatment. He gladly does that and he and I are much happier.
     I am not a very good "sheep" and I need information: Whys, hows, and what ifs -- so I can sleep at night. My husband wants to know what to do and he could not care less about the whys. My husband likes detail work so he makes all of his and my appointments, refills all the meds, and asks me to print out charts for his morning weigh-in. You might make a list of things to do and see if your husband wants to do them.
     For example, my husband makes out a weeks worth of meds and puts them in a pill container. Then he takes the meds that will not last the next week and orders them by phone. I check to see if he has taken all of his meds by asking him, not every day but just busy days. He says that this helps because he doesn't want to miss any of the meds.
     I would not worry if your husband continues to let you do all the of "technical" jobs as long as he stays with the plan. One last thing: Any illness can make you too tired to advocate for yourself. I have been so ill myself that my family had to step in because I was in so much pain that I just could not even think. I know that CHF on the bad days can just be too much to handle. I hope this helps. Susan B.

Elizabeth's February 25 reply to Susan B's February 24, 2004 - Hello Susan, In some respects, it seems as as if we're married to the same person! One of the things about Bruce is that even before he had a massive cardiac arrest in 2000, he never took care of life's details. He was a lawyer and then a judge and always had assistants to take care of the "petty" details of life. By the time that he was back on his feet from the his cardiac arrest, all those jobs fell on me. So he was never a wizard at any time and he wasn't suddenly going to become an organized wizard after being so sick.
     The only thing that he's somewhat careful about is taking the myriad of pills. However, I have to admit that I always double check just to make sure. It's just very hard for me to understand why he doesn't want to know what and why he's taking all these prescriptions.
     I too am not a "sheep" when it comes to health. Over 7 years, I had my entire neck welded together and wanted to know every detail. So, it's more than a bit alien to watch a person take a back seat to his own health woes but I also know that you're right - as long as he stays with "the plan" (if only we had one!) and keeps ticking, I guess I'll remain the technical person, with a bit of help and words of wisdom from my new friends.

Elizabeth's February 25 reply to Barbara's February 18, 2004 - Hi Barbara, Bruce sees the internist (who also got the test results) tomorrow and I'll let you know what he says. Last week, the cardiologist did tell us that Bruce is about 75% recovered from all the infections that he had since November and that his body may still need extra rest. The thing that continues to baffle me is that Bruce falls asleep after breakfast, shaving and showering. It doesn't take much for him to nod off before really doing too much. I'll keep you posted. Liz.

Carol, February 25, 2004 - Hi, I know how everyone feels about everything being on your shoulders. My husband John, has had CHF for 7 years. In the last 2 years he has become much more sensitive to salt and sodium. We go to the doctors, who tell him no salt, but he continues to sprinkle it on his food. He tells them he has found some salt-free bacon! He does not weigh himself every day. I think he forgets but I also think he is in denial about the relationship between weight gain and CHF.
     He has now been told to restrict fluids to 5 cups a day. He has been told to cut back on fruit juice and to get his sugars back under control. He very conscientiously takes his meds, though and he has cut way way back on the salt, just not all the way. I guess I expect too much. I have not come to peace with it yet. I think he relies on the meds to do it all. The more I talk at him (yes, at him) the more resistance there is.
     He can hardly go up and down the stairs and he sometimes has to stop and rest part way up but I can't get him to see the connection between the salt and sugar, and his ability to function without getting so tired. It took me 28 years to cut back on salt myself even though I have hypertension, but in the face of such debilitating symptoms, how can he stay in denial? How does he do well with meds and going for tests, but not see how much more he can help himself?
     I am trying to hang in there. We are only two, and I am finding it hard to work all day and keep up with all the household chores - mine and John's too, now. It is hard to try to stand by and watch as his health gets worse. This forum has certainly helped tremendously. I see that I am not alone. I have made a friend I keep in touch with, and the treatment we are now seeking is as a result of posts I have seen here, and Jon.

Bhree R, February 25, 2004 - Hi, My husband was diagnosed with IDCM in September of 2003. He has PVCs, a LBBB and V-tach. He's 35 and in great shape except for his heart - they call him well compensated. It does cause him some fatigue but he does well enough to keep up with our two young daughters.
     His EF was 13% and has not been checked again since his doctor thinks he should be on full meds before they check him again. He is currently increasing his Coreg and then his lisinopril. He's also on digoxin (Lanoxin) and Coumadin. However, this could be another 6 months or more. They are also talking about implanting a pacemaker/defibrillator.
     Since we've never been through this before, it's hard to know what questions to ask and how to react to the doctor's recommendations regarding treatment. Right now, our biggest concern is the pacemaker/ICD. Should he have it implanted before he's full up on the meds and his EF is checked again? Does anyone have any thoughts on the subject?
     Also, have you heard of or experienced increases in Coreg causing more irregular heart beats and dizziness? When is an appropriate time to do an exercise/oxygen saturation test? I have a lot more questions, but these are the biggest ones. Thanks in advance for your responses.

Davida S' February 26 reply to Bhree R's February 25, 2004 - Hi, My husband was 35 when he was diagnosed with CHF. He is now 39. It started as a cold virus that just esculated until the diagnosis turned into full blown CHF with an EF under 10% at its worse. He was blessed and after 18 months he was back in normal range for his EF. He has had 3 echoes in normal range, the last one I think was 55 to 60% and he has had 3 echoes in the 50% or higher range.
     Coreg was not a good drug for him. I think the highest he got to was 25mg and he got very dizzy, passed out a couple of times and had irregular heart beats. When they took him off it in the hospital he had an episode of fast heart beats of 100+ so then they put him on that dreaded amiodarone (Cordarone). I never believed he needed amidarone I just figure that rapid heart beat was withdrawal symptoms from Coreg.
     Keep your eye on your husband. We had more emergency room visits on Coreg than I care to remember. His blood pressure got so low it was scary. He would have terrible dizzy spells. It was very scary because we did not understand where it was coming from. We thought his heart was getting worse. The first time he fainted I thought he was having a heart attack. Coreg is not for everyone.
     My husband was also allergic to digoxin (Lanoxin). He had unfavorable reactions to the drug. I would also get a second opinion from another doctor just to make sure you are getting the best care. We did that and switched doctors. I think it made a world of difference to his recovery.
     Check with his doctors and see if he can take short walks every day. Exercise is the best, I think, to improve heart function but your doctor has to give the okay. My husband walked every day and lifted light hand weights (3 lbs). Feel free to e-mail me directly if you have any other questions. Take care.

Susan B's February 26 reply to Elizabeth's February 25, 2004 - Hello Elizabeth, Does your husband stop breathing in his sleep? My husband did before we got him a CPAP. Many people suffering with CHF have sleeping problems. My sister's husband snored so loudly that you could hear him all through the house. I talking her into having him do a sleep study and he was waking up 40+ times per hour. I am concerned that your husband many have a sleep disorder. My husband was also falling asleep almost anywhere. Now he is feeling so much better and he doesn't snore anymore - with the machine.
     I am also concerned that you say your husband doesn't have a plan. His cardiologist should have a plan with Bruce. The plan should include the meds and whether there are plans to change them in the future, his exercise program and plans to change that, and scheduled checkups and blood tests. My husband also has a Vo2max test every year. My husband is hoping to cut back on some of his meds. We had him off the digoxin but he did not do as well and had to go back. We have a plan of attack and a check up every 3 months. We have a notebook with all of his check up reports, so we can see how he is doing. Trends are very important. Good luck. Susan.
Jon's note: I would like to point out that Susan's husband has a good CHF specialist and that is a critical part of success, so find one and stick with him!

Susan B's February 26 reply to Bhree R's February 25, 2004 - Hi and welcome to the boards, Bhree. I would have a second doctor check my husband out before doing anything like the pacemaker/defibrillator. You seem unsure, so I would talk to another doctor. My husband also has IDCM but he does not have the PVCs or the LBBB. He has been cardioverted 2 times in 3 years. My mother had bradycardia and she got her pacemaker last summer. She is doing okay. Sshe has sarcoidosis and it will take time to improve. However, now she has V-tach. She felt better as soon as the pacemaker was in. Her father-in-law also had a pacemaker put in last summer. He is 85 years old, playing 18 holes of golf at least 3 times per week.
     My husband did his first Vo2max test a few weeks after we got his meds adjusted. It takes forever with the Coreg. Coumadin is a never ending battle. My husband had some major dental work that required him to go off the Coumadin 2 times in less than 3 months and now we are adjusting to get the Coumadin back on track. Good luck. Susan B.
Jon's note: Susan, I managed to improperly transfer this post and may have lost part of it. If so, please post any additions or corrections. Sorry.

Lena, February 26, 2004 - Hi, I would like to say thanks to everyone who responded to my post.

Susan B's February 27 reply to Jon's February 26, 2004 - Hi Jon, You are so right! I cannot say enough good things about my husband's CHF specialist. It is critical to find one and delevop a working relationship. I say working relationship because this is a two-way street. The doctors are not there on a day-to-day basis and it is the day-to-day actions that determine outcome. Moreover, the doctor can only make the proper adjustments if the patient (or their advocate) is well prepared and informed.
     My husband's doctor and I talk a kind of shorthand regarding the meds and treatment. He knows that I will be prepared with notes and relevent information regarding my husband's health. In return, my husband gets topnotch treatment - a small price to pay for the best outcome posible for all of us. Thanks Jon, for pointing out just how important the right CHF specialist is. Susan B.

Elizabeth's February 27 reply to Susan B's February 26, 2004 - Hi Susan, No, Bruce doesn't stop breathing while he sleeps and he only seems to snore if he sleeps on his back. Bruce can doze at the drop of a hat but he is also diabetic and it could have something to do with dips and dives in his sugar level.
     Up until he had pneumonia plus all the other infections that followed, Bruce was on the treadmill 5 out of 7 days a week. That was not only for his heart but for the diabetes. That's been controlled by diet and exercise as all medications made him plop into hypoglycemic melt downs - we were on a first name basis with the ambulance crews.
     Now, he walks home from the senior center about a mile and a quarter away, on most days when the weather has cooperated. By the time he gets home, he's wheezing like crazy and that never was a problem when he was in the daily swing of the treadmill. That activity and the medications (Lanoxin, Hyzaar, metoprolol, warfarin, isosorbide and Zestril) and monthly blood work-ups were "the plan" but obviously the treadmill is off it now.
     The BNP results came back and the number was 195. The cardiologist said that this was relatively insignificant as that could also be a sign of an enlarged heart. The doctor said that many BNP results are over 1000 so I'm hoping that he was right about not over-reacting to Bruce's.
     The cardiologist thinks the wheezing may have something to do with an inflammation in the trachea or from past intubations so we're off to see an ear, nose and throat doctor today. I'll keep you posted. Stay well!

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