The paperwork never ends The Archives
Loved Ones - November, 1999 Archive Index

Jim Spraker 11-1     fluid retention treatment questions & more
Gus R's 11-2 reply to Jim Spraker's 11-1     CHF meds, docs, & more
Regina 11-2     grand dad's muscle cramps question
Jon's 11-2 reply to Regina's 11-2     muscle cramps possibility
Melinda 11-4     treatment & prognosis questions
Jon's 11-4 reply to Melinda's 11-4     CHF treatment
Kathryn C 11-4     update, information a key
Cindy 11-4     how do we help mom cope? & more
Jons' 11-4 reply to Cindy's 11-4     for starters,...
Ben B's 11-4 reply to Melinda's 11-4     doctors & predictions
Anita S' 11-4 reply to Jon's 10-26     pulmonary tests, update, RLS
Jon's 11-4 reply to Anita S' 11-4     pulmonary tests
Ellen 11-4     why isn't Wayne on transplant list?
Jon's 11-4 reply to Ellen's 11-4     some factors in the decision
Karen D's 11-5 reply to Ellen's 11-4     transplant activation experience & more
Wendy K 11-5     EF, cath, echo questions
Jon's 11-5 reply to Wendy K's 11-5     EF, cath, echo information
Don 11-6     questions about my dad's future
Paul B 11-7     heart meds versus multiple health problems
Jon's 11-7 reply to Paul B's 11-7     heart meds versus multiple health problems
Kathryn 11-8     bad days - what is this?
Jon's 11-8 reply to Kathryn's 11-8     CHFers and bad days
Kathryn's 11-8 reply to Jon's 11-8     my son has e-mail now & more
Diane 11-10     long plane trip questions
Barbara S 11-10     CHF specialist questions
Jon's 11-10 reply to Barbara S' 11-10     CHF specialists
Donna V 11-11     need advice about mom's care & future
Annie G 11-12     questions
Jon's 11-12 reply to Annie G's 11-12     new CHF drug
Deb 11-12     mom's doctors & cough - questions
Jon's 11-12 reply to Deb's 11-12     doctors & drugs
Sharon G 11-14     seek advice & support
Paul B 11-15     my mother in law died
Brad H 11-15     beta-blocker questions regarding my son
Shelitha 11-15     questions about my grandmother's treatment
Wendy 11-16     Lyme disease, update
Karen Edge 11-16     update & more
Sharon G 11-17     update & some questions
Jim Spraker 11-18     any ideas about CoQ10 dose?
Jill S' 11-19 reply to Brad H's 11-15     beta-blockers' effects
Leeann D's 11-19 reply to Brad H's 11-15     beta-blockers & transplants
Staci H's 11-19 reply to Brad H's 11-15     beta-blockers
Robert 11-20     TMR questions
Jon's 11-20 reply to Robert's 11-20     TMR
Kathryn 11-20     my son is so depressed - what to do?
Gus R's 11-20 reply to Jim Spraker's 11-18     CoQ10 dose
Jon's 11-20 reply to Gus R's 11-20     oops!
Gus R's 11-21 reply to Sharon G's 11-17     gas problems, exercise & more
Bette 11-21     update on dad, this board
Robin Lynn's 11-21 reply to Brad H's 11-15     beta-blocker use & effects
Sharon G's 11-22 reply to Gus R's 11-21     thx, update on mom & more
Peggy E 11-22     seek CHF specialist in Missouri
Jon's 11-22 reply to Peggy E's 11-22     try this Url
Jim Spraker's 11-24 reply to Gus R's 11-20     thanks for the info & more
Peggy E's 11-27 reply to Jon's 11-22     thanks for the info
Paul B 11-28     take care for end of life process
Pat C 11-28     questions about my aunt
Jon's 11-28 reply to Pat C's 11-28     digoxin, heart failure & more
Pat C's 11-28 reply to Jon's 11-28     more info
Jon's 11-28 reply to Pat C's 11-28     meds, CHF, smoking & more

Gus R's November 2 reply to Jim Spraker's November 1, 1999 - Hi Jim, Jon has a section on CHF drugs which can be found here (let it load). Diuretics are near the top of the list and he has several listed there. I'm no expert but I think Lasix is the most common one to start with. Then if it doesn't do the job, there are many that will do more. I may be wrong here too, but it sounds to me like your mom's GP is giving up on her. If this isn't what you want, and more importantly, what your Mom wants, it's time for a serious talk with the GP. Then if he still doesn't take a more aggressive approach, it's time to replace the GP. Best wishes, Gus R.

Jim Spraker, November 1, 1999 - Hi, If anyone can give me some advice, I'd greatly appreciate it. My mother has been in the hospital a week with fluid retention that has been extremely difficult to treat. I found to my dismay that her GP believes in only very conservative treatment for older patients. What are some alternative methods of treating fluid retention? He says that Mom's kidneys are not bad enough to warrent dialysis, and he says that even if we did try that, Mom's heart would still have the same problems getting rid of fluid. Please, please give me some ideas. Right now, she's on, because of a caring specialist, Coreg, Zaroxolyn, Lasix, and another drug that begins, I believe with Ado---. If anyone has any ideas, please let me know, and please keep us in your prayers.

Regina, November 2, 1999 - Hi, I was just wondering if anyone had any advice on leg cramps and also digestive problems. Our grandfather has CHF and among all the other problems of the disease, he gets severe leg cramping. We would like to make this comfortable for him and have tried whatever we hear to try. If you have any suggestions, please e-mail me. I would just like to give him a good night's sleep as these tend to keep him awake. Thanks.

Jon's November 2 reply to Regina's November 2, 1999 - Hi Regina, This may be a potassium deficiency. That can lead to problems a lot more serious than his current muscle cramps if untreated, so I suggest having his doctor run a blood test immediately and prescribe slow release Rx potassium for him, if this turns out to be the problem. You can read some about potassium and magnesium here. Jon.

Melinda, November 4, 1999 - Hi, My father tells me his doctor says he only has two years to live with congestive heart failure. Is this normal for a doctor to say without offering some treatment to try to reverse some symptoms? My father has been a heavy smoker and is an alcoholic and I realize this does him no good in this situation. However, I am surprised a doctor would say such a thing without trying a treatment. Any suggestions?

Jon's November 4 reply to Melinda's November 4, 1999 - Hi Melinda, I don't mean to be abrupt, but are you sure there has been no treatment offered? Some people don't think of taking a pill or two as treatment, but that's the most important part of treating CHF - that pill or two. <g>
     Also, how old is your dad? It is well known that elderly people who get CHF are not agressively treated - which is indeed wrong. If you can supply more information, we'll be happy to help. He needs to be on a low sodium diet to start with. He can take care of that himself, if he wants to improve his condition. See Kitchen Corner for starters. And be sure to Read The Manual! After digesting some of that information and talking to your dad, be sure to come back with the questions you will no doubt have, and we'll work on some answers. Jon.

Kathryn C, November 4, 1999 - Hi Jon and Everyone, My son had a recheck with his cardiologist yesterday. She noted that we had added CoQ10, a multiple vitamin, and magnesium. She asked why the magnesium. We said we had heard that the loop diuretics could cause depletion in magnesium and my son has a history of kidney stones, so it sounded especially important to have him on a magnesium supplement. Thank you Jon, for helping us keep on the right track. The cardiologist asked "Do you know something I don't know?" I told her about your Web site, so maybe she will take a look at the valuable information here.

Cindy, November 4, 1999 - Hi Jon, I hope you are feeling good these days. I just found out that my Mom, who is 61 years old and in good physical shape, was diagnosed with CHF. Her primary care doctor thought she had bronchitis until he did a chest X-ray. He and the cardiologist were somewhat surprised. My Mom has been healthy as a horse her whole life. She never smoked, drinks a glass of red wine occasionally, eats a fairly healthy diet, but definitely lacks in exercise. She had a persistent dry cough for months that she ignored and while she was visiting this past summer, I noticed how swollen her ankles were. Finally, after hearing all of her kids (me included) nagging her to go to her doctor, she went. I live in California and she lives in Philadelphia where the rest of my family resides, about 1-5 miles from her house. We are a close knit family and the news has been upsetting to us all.
     I first want to thank you for your very informative Website. I was on a few other sites and the mumbo-jumbo was so thick, I couldn't understand half of what was written. My biggest concern right now is getting my Mom to understand the severity of this disease. She was already worrying about missing work! She does not own a computer and has no computer knowledge, so I'm planning on buying the "Success with Heart Failure" book and sending it to her next week. My sister is contemplating pulling her cardiologist aside and informing him of her stubborn behavior. I am scared. I am worried and I know deep down that she is too. Do you have any other suggestions to help us help her cope with this sudden change of life? I'll keep you in my daily prayers. Thanks again for all the wonderful information. I will share your Website with my other siblings. Love, Cindy.

Jon's November 4 reply to Cindy's November 4, 1999 - Howdy-doo and welcome to Jon's Place. I'd say load up that printer with a lot of paper, have a spare ink cartridge on hand and start printing, begininng with, of course, The Manual. <g> That way, you can actually give her my Website, in part or completely, via snail-mail. Sending her a copy of Marc Silver's book is a very good idea, too. It's the only book I endorse for CHFers to read and keep on hand for reference.
     The key to coping with heart failure begins with understanding its basics and its basic treatments. Knowledge is power. That's because knowing all about our illness allows us to take steps ourselves to lessen its impact on our lives instead of having to rely on doctors and nurses, who tend to keep us in the dark, making us feel helpless and at the mercy of others. Many here will tell you that learning how CHF is treated allows us to make intelligent suggestions to our own doctors, often getting us better treatment, and better quality of life, than if we just let our doc plot our course for us.
     Physically and specifically, make sure she is getting an ACE inhibitor or ACE 2 blocker, Lanoxin (digoxin), a diuretic (like Lasix), 25mg a day of Aldactone (spironolactone) and an Rx potassium supplement if she needs it. Be sure she is having a blood test at least every 3 months to check many things, especially her serum (blood) potassium level. This is important! If she can tolerate it, she may be put on a beta-blocker also. She needs to exercise! Send her the studies at Heartbytes about exercise and download the text files since there is more exercise info there (I think). Get her started on a low sodium diet. Mention fluid restriction to see if her doctor is really on the ball.
     Coping is done in as many ways as there are people with CHF. <g> The main points are to admit one is ill and that it isn't just going to go away. Then, realize that hey, this stuff ain't gonna kill me tomorrow, not if I take halfway decent care of myself. These are the two starting places for coping. From there, it's up to each person to find their source of strength. Mine is Jesus, plain and simple. As you've seen by my site, He hasn't let me down. Some days, He just plain types with my hands and walks with my feet because I'm really not up to doing anything, but He motivates me and that's important. You need to stay motivated to do the same everyday tasks of life you did before, as long as possible and as well as possible. You may have to change the way you do them, or the amount of time it takes, but keep on keeping on. Well, that's for starters! Jon.

Ben B's November 4 reply to Melinda's November 4, 1999 - Hi, I don't know who this doctor is, but with predictions like that he must be the amazing Kreskin. Seriously, no doctor can predict like that, especially these days. Almost everybody posting here thought they were going to only last a couple of years, but most are stable way past that time span. My friend who has absolutely zero symptoms was told a similar thing by a moron doctor who also prescribed no medication. He was fired rather quickly. I will say that maybe the doctor was trying to scare your dad into stopping the drinking and smoking which will hasten his death, as will keeping this particular doctor.

Anita S' November 4 reply to Jon's October 26, 1999 - Hi, Thank you for posting my question about Gene's pulmonary function test. We still have not heard the results. It's hard to get results quickly from any of the Veteran's Hospital Doctors because they are so busy. Were you able to find out any new information from your cardiologist friend? Also, after Gene and I read the posts about those of you who have RLS, we realized that we forgot to mention that he also takes 325mg of quinine sulfate at bedtime for his RLS, along with his other medicines. Take care. Anita and Gene.

Jon's November 4 reply to Anita S' November 4, 1999 - Hi Anita, I did hear from both the cardiologists I wrote to but because there wasn't enough for them to go on, I didn't post their replies. It sounds like Gene got a standard pulmonary function test. It will give some info on lung function but is nothing like a Vo2max test. Sorry. Jon.

Ellen, November 4, 1999 - Hi Jon and everyone, I went with my husband Wayne, to see his local cardiologist. His CHF docs are out of town and his next appointment isn't until December 5. Since he has been feeling so lousy, we went and saw his cardiologist who sent him for some blood tests - one to check his thyroid and a liver function test. This doctor seems good and was recommended to us by the CHF doctor. I'm concerned though, why every time Wayne goes to see the cardiologist, he asks why Wayne is not on the heart transplant list. We have discussed this with the CHF doc and were told his condition isn't bad enough. He had the transplant evaluation 8-98 and was told he needed a new heart. I'm not sure how bad a person has to be before they place you on the list. Does anyone know? His cardiologist says he doesn't understand why Wayne isn't, that his condition is not going to get any better, but will progressively get worse. Anyway, I'm hoping there is another reason for him feeling so bad and maybe something will show up in the blood tests that were done yesterday. He feels so bad some days that he sleeps from 12-18 hours a day. If this just comes down to CHF, I think I'm going to start asking a lot more questions to his CHF doc. He usually sleeps a lot anyway since he has been sick, but has sleeping more than usual.

Jon's November 4 reply to Ellen's November 4, 1999 - Hi Ellen, What is Wayne's EF, Vo2max and heart class? If he can't do a Vo2max test, has he had a stress test where they use a chemical to stress his heart and then do an echo? Does he have any arrhythmias? Are his arteries clear? How is his kidney function? Does he have much edema (swelling)? How high is his diuretic dose? How high is his ACE inhibitor dose? Does he have any other health problems besides CHF and arthritis? What meds is he on for his arthritis? Is he on oxygen, and if so, is it continous and at what concentration per hour (2L, 3L,etc,...)? What caused his CHF? Does he smoke? Drink? This info all contributes to transplant decisions. If you can provide most of this info, maybe we can help you figure out why he isn't on the list yet. Jon.

Karen D's November 5 reply to Ellen's November 4, 1999 - Hi Ellen, All the statistics that Jon mentioned are taken into consideration before activating your husband for transplant. My husband was evaluated in January of this year, was told he was an acceptable candidate, but also told that until his VO2Max score was 15 or below, he would not be activated. Bill's EF at diagnosis was between 12-15%, and he was a Class 4. He scored 16.2 on his last VO2Max test, down a little from the previous one six months earlier. He'll have another VO2Max in February to see how things are then. Have you asked the CHF doctor to be sure that your local cardiologist gets copies of Wayne's records and vice versa? It seems as if the two doctors need to be communicating a lot better, if the local doc is asking you instead of contacting Wayne's CHF doctor. I hope the blood tests were able to pinpoint why he has been feeling worse than normal, and that he will feel better soon. Karen.

Wendy K, November 5, 1999 - Hi Jon, Since discovering your Website, I find myself here every day to see what is the latest. Thanks for helping others like me out. I went to the cardiologist on Wednesday, November 3, with my mother. I felt that he has her best interests at heart and is the most qualified in the area to take care of her. I just had a question about the results of 2 different tests. Twenty months ago when they diagnosed mother with dilated cardiomyopathy, they did an echo and found an EF of 24%. A few months later, they did a cath and found an EF of 35%. Last month they did another echo and found the EF results at 20%. I questioned these varying results and he said that he believes the echo results are more accurate. I have a friend who is a cardiac care RN and she said to me that usually the EF results from a cath are more accurate. What do you know about this? Thanks for your help. Wendy K.

Jon's November 5 reply to Wendy K, November 5, 1999 - Hiya Wendy, A cath measurement is more accurate, period. That's because with a cath, the pressure reading is taken directly from an instrument delivered into the heart and its arteries so blood flow is actually in contact with the instrument doing the measurement. With an echo, the measurements are taken from a mathematical formula, into which are plugged numbers taken from sound waves bounced off your heart and its arteries from outside the body - through the echo transducer. My own CHF doc (he's very very good) allows for a +/- 8% error on all echo mesaurements, although an experienced tech will do better than that. Most doctors allow 1-2% error from a cath reading. This means that for an echo reading your EF as 20%, it could actually range from 12-28%.
     Also, EFs vary from day to day, if not from hour to hour, or minute to minute. The heart, like the rest of the body, is a dynamic organism. Our bodies are mind-boggling assemblies of interlocked processes and mechanisms that compensate constantly for the body's environment. So your EF might be 20% right now, but later today, it might be 36% or 14%. That's why I have come to believe that individual EF readings are not nearly so important as the trend seen through a series of readings taken over time. So watch that trend. If each reading is lower than the last, her heart is probably declining in strength. I worry that her doctor considers an echo more accurate than a cath. I have never heard a cardiologist say this before.
     I hope this helps rather than just confusing the issue. Goodness, my mouth does run, doesn't it?! Jon.

Don, November 6, 1999 - Hi, I'm looking for advice and information about my dad. I'm sure this message board has dealt with this in the past, so if you have a reference to old postings, I'll search it out. In the meantime, Dad is 85 and currently living in assisted living at a life care community. Here is the brief history of a man who has beat many odds:
1981  open heart surgery (5 bypasses) following 2 heart attacks
1990  ruptured aneurysm that he barely survived, left him blind in one eye, with limited vision in the other eye, and general weakness that he never fully recovered from
1997  broken hip
1997  six months after the hip break, a serious stroke that left him further debilitated and dragging one foot while walking
1998  we believe a series of "mini-strokes"
1999  confirmed CHF that seems to be gaining momentum regarding frequency of problems with fluid retention - first in July, then 6 weeks later, then 4 weeks later, then 2-3 weeks later
     Dad has changed his living will to avoid CPR or other extraordinary measures. We (my 2 brothers and I) are wondering if this progression, coupled with other limiting factors, means that Dad is not going to live much longer or if there might be a plateau that he can reach. He is currently getting physical and occupational therapy in an attempt to return home with Mom in their house at the life care community for awhile. I'll appreciate any and all comments from those of you who've experienced this with a frail parent or spouse. Thanks for reading this.

Paul B, November 7, 1999 - Hi all, Here's another question about my mother in law, who has a bunch of health problems including CHF. The list also includes terminal throat cancer and various lung and bleeding problems. Jon made mention awhile back about people feeling better for a short period of time when they discontinue their ACE inhibitors. With everything else going on, my mother in law is sleeping practically all the time and never gets out of bed. To tell the truth, she has so many things going on that CHF is probably the least of her problems, but is probably the ailment she takes most of her medication for.
     Is it unreasonable to think that her heart medications combined with her deteriorating medical condition and other medications may be actually robbing her of quality of life in her remaining days? Eleanor is under hospice care at home, but showed some improvement on a day when my brother in law forgot to give her the morning meds. Any thoughts on this complex problem would be welcomed.

Jon's November 7 reply to Paul B's November 7, 1999 - Hi Paul, It's not unreasonable to make such an assumption. As long as she is able to make the decision understanding its full consequences, and as long as she is the one making the decision, I think it's reasonable to trade some length of life for life quality by dropping some heart meds; Should she so choose.
     The catch is that the improvement in the way she feels may be so short-lived as to make little difference. Re-starting her heart meds if that improvement stops may be worse than having just stayed on them in the first place. This calls for a long, honest discussion with her heart doctor, primary care doctor and a consulting pharmacist before jumping in to a decision. Jon.

Kathryn, November 8, 1999 - Hi, I just wanted to say a word about tiredness and CHF. This last Friday was the worst day ever for my son's CHF. He was so weak and exhausted that he couldn't even talk straight at times. He woke up feeling lousy and stayed that way all day. When a 26 year old can't even walk a block without stopping, it's truly frightening. We were at cardiac rehab in the morning and he didn't have the energy to do anything. His BP was good at 120/70 and his ECG looked ok, except for some premature beats. I stayed home with him all day and waited for a call back from the cardiologist. Finally they called and said that the readings didn't really merit him being seen by his cardiologist, but to keep an eye on him and if his condition worsened to call back. He had no SOB. Well, he slept all that day and into the next, and then seemed to wake up with more energy the following day. From what I see from everyone's posts here, it's not unusual for CHFers to have severe tiredness, but I just gotta say it is truly scary to witness. Is there any rhyme or reason to the tiredness, or does it just drop in on you without warning like this? Thanks for listening.

Jon's November 8 reply to Kathryn's November 8, 1999 - Hi Kathryn, It can fall on us anytime. There are days when I am so tired, I literally cannot hold up my head for more than a moment and have to spend most of the day lying down. I just can't sit up for more than a few minutes because of the fatigue in my neck and back. Luckily for me, these days are not a common occurrence, but they do happen.
     Other times, I have what I call a heart-failure day. On such a day, I have a physical feeling that is all-over "bad." There is no way to describe it to someone who hasn't experienced it and not even my CHF doc seems to understand what I mean. In my gut, it is on one of those days that I really expect to die at some point down the road because on those days, I know something is terribly wrong in my body. There's nothing I can do and there are no "acute" symptoms, just an overall physical feeling of frailty and "badness." I'm sorry I can't be more specific but I think your son will understand. Tell him to tough those days out - such a day does not mean that tomorrow is going to be more of the same. I cannot spot any pattern in my bad days whatsoever. Jon.

Kathryn's November 8 reply to Jon's November 8, 1999 - Hi, Thanks so much, Jon. Words can't describe how scary it is to watch that kind of tiredness envelope someone you love. My son now has his own e-mail address. It is I know he would appreciate hearing directly from you and others who actually have this disease. I can't say how much I appreciate your help. God bless you all, Kathryn.

Diane, November 10, 1999 - Hi, I think this site is great and I'll come back to it often to learn more about CHF. My grandmother is 82 and was recently diagnosed with CHF. She gets tired a lot and has problems with edema. She has expressed interest in traveling to Hawaii, which means a 13-15 hour plane trip each way. I want to get her there while she is still able to walk around a bit. Does anyone have any advice for me? Is it best to break the trip up into several short plane trips over several days? Thanks! Diane.

Barbara S, November 10, 1999 - Hi Jon, Is a cardiologist a CHF doctor? I can't seem to find any specialists in my area and those I have talked to have said that any cardiologist is a CHF doctor. Is that true? What should I be asking and what should I be looking for? I am curious if I should leave my father's care to just his cardiologist, who has developed an attitude of non-interest. He seems to not be taking questions and concerns very seriously lately. I can't help but wonder if he is just out of ideas. It's hard to find a new doctor. Any suggestions are greatly appreciated.

Jon's November 10 reply to Barbara S' November 10, 1999 - Hi Barbara, No! All CHF specialists are cardiologists but not all cardiologists are CHF specialists. They're like surgeons - some do heart surgery, some do back surgery, some do brain surgery, some do general surgery. Cardiology is split into sub-specialties also. Some cardiologists specialize in heart failure, some in arrhythmia problems, some in dealing with blockages of the coronary arteries, and on and on. You need a CHF specialist, and there are a lot of them around, believe me. Read this post and fire any further questions right back to us here, and we'll answer as best we can. Jon.

Donna V, November 11, 1999 - Hi, My mom who is 65 is in end-stage cardiomyopathy. Her disease has deteriorated to the point where she needs to be on a constant IV infusion of Milrinone. During this latest hospitalization, which bagan October 8, her docs (CHF specialists) have attempted 3 times to wean her off the IV and each attempt was more unsuccessful than the last. She is not a candidate for a transplant I'm told, because of her age and some psychiatric problems she had in the past. I'm not sure I understand that. My mother is going to die shortly without a new heart. The problem I am currently facing is where she is going to go when she leaves the hospital. I am my mom's only relative. I live alone and work full-time. I would like to try to care for her but I'm very concerned as to what kind of a committment I would be taking on. I also have no idea what to expect from here, and I'm afraid. What is it going to be like to watch her die? Or should I be thinking only about placement in an LTC facility? I would be grateful for any suggestions/help or just plain encouragement. We live in New Jersey.

Annie G, November 12, 1999 - Hi everyone, I have 2 questions:
1) How bad is a couple of drinks? My husband hasn't had a drink since last November when he was diagnosed. Would a few drinks a few times a year cause many problems? How about for New Years? Not that he'd be awake that late, but I'm just wondering.
2) Last night on our National news there was an item that stated a new class of drug was being tested in Canada for heart failure that was showing a lot of potential, and decreased death rate and less hospitalisations. The story said it would be available in about 18 months. The intitial part of the study was just presented. There was no other info. The name of the drug was omipatrolat. He said it twice and I tried to sound it out. I'm going to look around and see if I can find anything. Thanks. Any replies to me via e-mail, please put my name in the subject line. Thanks, Annie.

Jon's November 12 reply to Annie G's November 12, 1999 - Hi Annie, The drug is omapatrilat, from a class of compounds called vasopeptidase inhibitors. There is some info about it in the text files I send out to people on the mailing list. You can download the collection of text files from this page. I also have the article the news person read from ready to send out on the mailing list but haven't gotten around to it yet. Jon.

Deb, November 12, 1999 - Hi, My Mother is 85 and has CHF, according to her internist. Her GP thinks she has asthma. She takes Altace, Renedil, furosemide, potassium, Salbutamol by inhalation machine, Atrovent by inhaler. Every time she sees the internist, he ups the blood pressure and diuretic medications and when she sees the GP, he reduces it. She has a wicked cough since May, 1999, and is not improving. She will awaken early in the morning and sometimes cough for 4 hours straight. She is on a low sodium diet. Is there anything else that could be done to help relieve the coughing spells? Thank you, Deb.

Jon's November 12 reply to Deb's November 12, 1999 - Hi Deb, Because I'm really tired this afternoon, I'm going to give the short version. The only thing that will help her with both her cough and relieving her other symptoms is to get a new doctor and have her see a CHF specialist to boot. Her doctors are not communicating at all and are working against each other, which means they are not working for her, which means she suffers - literally - because they don't have their attitude right. Doctors work for patients - not the other way around. Her cough could be from Altace, which can probably be replaced by any of the ACE 2 blockers listed at my ACE inhibitor page without the cough. I don't know what Renedril is, so I don't know if it contributes to her cough or not. Jon.

Sharon G, November 14, 1999 - Hi, My mother just turned 71 last Thursday, one week after being admitted to the hospital and diagnosed with CHF due to cardiomyopathy. Her output is only 10% instead of 55% and her heart is really enlarged. They say she is too old for a transplant and since there is no blockage, medication is the only treatment offered. The optimistic outlook is less than 2 years and could be as soon as 2 days. Her best input so far is to walk 5 feet to the table to eat and then she is exhausted. Does this get better or are we looking at a very rapid decline? She looks really bad and my dad refused to accept the fact that anything is wrong and that she won't be up and around in "a couple of weeks." I am the oldest of 8 children and the only one close enough to help take care of them. Do you have any suggestions on how to retain my sanity amidst this chaos? Dad is a diabetic and has blackout spells so that worries Mom, which of course isn't too good for her either. I love this site and have copied lots of info for the other kids to read. It made more sense than most of the medical stuff I had already copied before I found this site. I also am responsible for their meals. Thanks for your time. Any help and prayers would be greatly appreciated. Sharon.

Paul B, November 15, 1999 - Hi all, My mother in law, Eleanor Sheally, passed away Saturday evening surrounded by her family. She was 67. Although I wasn't present for her death, I had been there for several hours during the preceding 2 days before I had to go to work Saturday afternoon. She struggled for the last several days but had a peaceful passing. Thanks for the support and prayers. Jon, you're the best!

Brad H, November 15, 1999 - Hi, My 9 year old son has a pacemacker, an artificial valve, VSD and LTGA (corrected transposition of the great arteries). He had an operation at age 2 patching the hole and putting in the artificial valve and pacemaker. He's a trouper. He has done great. When we went in for a recent echo, the cardiologists said his EF is 27 and to put him on a transplant list. He wants to give him beta-blockers to improve his EF. He still looks and feels great, yet I hear that's the miracle and he could go downhill fast. Does anyone know what side affects and risks the beta-blockers would pose? We are faith believing Christians and know God can heal him but I do want to know all I can about any help, meds, or testimonies I can. My son is beautiful! If you only knew him. Brad.

Shelitha, November 15, 1999 - Hi, I really appreciated the opportunity to read the helpful information here on this Website. My grandmother is 87 years old and just recently found she had CHF (about 3 weeks ago). We took her to the ER for what we thought was a really bad cold or flu and immediately the ER doctor stated that her cough is due to a heart problem. The ER doctor told us her old ticker will stop in a year, 6 months, a month or a few weeks. This just sounds awful. My experience has been that older people don't count. Well, to me she counts a lot. She also has 60% kidney damage, which to me sounds really bad but the kidney doctor stated he would like to see her once she's over her heart attack. This makes me think they don't feel she has much longer. Otherwise, why wouldn't they start treatment immediately. Operations are out of the question because of her age. She is home now. However, her appettie is really bad and she has no energy. She's always saying she's tired and she just wants to rest. Her feet are cool and so are her legs. Many people have told me that these are signs of the body slowly dying. Please help me understand exactly what is happening. The doctors just state there is nothing they can do and that each day we get with her is a blessing. This is the only thing I agree with them on. Please keep me in your thoughts and prayers.

Wendy, November 16, 1999 - Hi, I wanted to post an update on my husband. I last wrote that my husband is being treated for Lyme disease. Dilated cardiomyopathy is a symptom of Lyme disease. Well, one month into the antibiotics and his ejection fraction went up 10%! My last post about this was posted on the board for people with CHF. My error - sorry! I just wanted to post an update for anyone who may live in a high risk area for Lyme. As posted before, almost every state has a case of Lyme disease. Something to "rule out" if possible. Take care. Wendy.

Karen Edge, November 16, 1999 - Hi all, Everything is going pretty good. My dad had a really bad bout of bronchitis, but after a few rounds of antibiotics and a few shots, he is doing much better - so much so that he is off today in the Delta running those precious little rabbits with those little stinky dogs. I recently started him on CoQ10 as a supplement, but I understand that maybe taurine or L-Carnitine should be added, too. Which one is best? How much? He depends on me so much and I want to make sure I don't give him anything that will hurt him. He is able to walk more and he says he feels like he's getting stronger. The doctor also said to keep him off Zocor and in a few weeks, after he was completely over the bronchitis, they'd have him back in to re-check his cholesterol levels and not to worry, that his vitals are all great and he's stable.
     I also want to say that this site is a real lifesaver for me. I get so much inspiration, and I check it every day. I'm really disappointed when I check it before you update it. I keep all of you on my prayer list, and I hope Rosie is doing okay with her chemo this week. Bless her heart. Thanks so much, Jon. It's nice to know there are others out there who deal with the same problems and who have such a strong Christian faith. Our Father is truly the Great Physician. Love in Christ, Karen Edge.

Sharon G, November 17, 1999 - Hi, I wrote last week and received very encouraging messages from so many. Thank you. I took mom to the ER yesterday. She was unable to breathe. They said it was excessive gas and that the potassium and Lanoxin levels in her blood were too high. They took her off those for 48 hours. She gets a new blood test tomorrow to check again. She is on 800mg Magoxide twice a day, 50mg Ultram 3 times day, 50mg Captopril twice a day, 40mg furosemide twice a day and 325mg aspirin daily. She was on 0.25mg Lanoxin and 20meq K-dur. She also takes 1.25mg Premarin and 500mg Cephalexin 3 times a day for chronic UT infection. She stays very nauseated and when she moves around, gas comes up and she nearly chokes and can't breathe. She is too exhausted to walk but I feel she really needs to move about other than going to the bathroom and kitchen table.
     Does anyone have any advice on this problem? The ER doctor gave her Mylanta gas tablets to relieve the excessive gas he said was probably caused by the Lanoxin. Thanks for any help.

Jim Spraker, November 18, 1999 - Hi folks, I'm sorry to hog the forum, but I wonder if I could have some opinions on the dose of CoQ10 for a 140 pound, 82 year old patient. It seems that there are as many theories as respondents to this question. Thanks a lot.

Jill S' November 19 reply to Brad H's November 15, 1999 - Hi Brad, Some of a beta-blocker's side effects are a lowered blood pressure and pulse rate, which can be good or bad depending on your son's situation. People on BBs also sometimes have more memory problems and insomnia. What is the name of the beta-blocker he is taking?

Leeann D's November 19 reply to Brad H's November 15, 1999 - Hi Brad, I say put off any transplant as long as you possibly can. Go get November's issue of Life magazine. There is a very informative article on heart transplants there - about the nitty gritty details. Don't get me wrong - I think if absolutely needed, they're great, but beta-blockers are also worth a try. I take Coreg and I believe it is has a lot to do with my heart getting better. My EF hovered under 20 for over a year but is now at 45 and my doctor credits Coreg.
     Initially there is some dizziness, but I really think is worth a try to postpone or even cancel your son's transplant! Beta-blockers keep you from absorbing certain hormones that make your heart work harder. I will be praying for you and your wonderful son. LeeAnn in Phoenix, age 39, DCM, ICD.

Staci H's November 19 reply to Brad H's November 15, 1999 - Hi Brad, Welcome to Jon's Place. Your son sounds very special and it's good to hear that he is doing well right now. I recommend that you read The Manual. There is a lot of valuable information there. You will also find something on beta-blockers. There are people here who have had great improvment in their EF with these drugs. God bless.

Robert, November 15, 1999 - Hi, My dad has CHF and my siblings have heard that TMR is showing promise as a treatment. Does anyone have any information?

Jon's November 20 reply to Robert's November 20, 1999 - Hi Robert. TMR (TMLR) and PMR are actually treatments for CAD (coronary artery disease, or blocked arteries) and angina. But, if your dad's CHF is caused by CAD that cannot be treated by angioplasty or bypass surgery, maybe TMR would be a way to help his CHF. See this page for some information and you can download more in text file format here. Jon.

Kathryn, November 20, 1999 - Hi Everyone, My son is having a bad time with depression. Can anyone recommend a "safe" antidepressant medication? He is on 50mg Captopril 3 times a day, 0.375mg Lanoxin, 20mg Lasix, 25mg spironolactone, plus a multi-vitamin, CoQ10, magnesium and one gram vitamin C daily. I am especially cautious of more medications because his CHF may have in fact been caused by long term use of a tricyclic antidepressant called Desipramine. So we are fairly hesitant to ask for him to be put back on any kind of anitdepressant but he is so far down, he has had thoughts of suicide. We have an appointment with his primary care physician later today. We are asking for a referral to a psychologist. As is mentioned in The Manual, my son is on a roller coaster of emotions. After physical therapy he is upbeat to the point of being manic, then another day he is down so far there is no looking up. I thought about trying him on St. John's Wort. I take 300mg daily and it seems to help but I'm not the one with CHF! Does anyone have any suggestions? Thanks and God bless you. Kathryn.

Gus R's November 20 reply to Jim Spraker's November 18, 1999 - Hi Jim, Jon, and All, I took CoQ10 for about 6 months and think I worked up to 210mg per day. I weighed 150 lbs. They can be found at this page. One says, "319 people with an average age of 67 years received CoQ10. The dose was 2mg per kilogram (2.2 lbs) of body weight every day for one year." Another says, "In this study, with CoQ10 supplements of 100mg daily,..." I'd go along with either of those answers, but I think there might be a typo in one of the CoQ10 articles. It says, "30 DCM patients took oral CoQ10, 100mg per kilogram (2.2 lbs) of body weight, for 2 months,..." and that's the one I doubt. Unless I'm doing something more senile than usual, that would be over 6000mg per day for a 140 pound person, which sounds like beau coup to me. :-) I'm no expert Jim, but I'd suggest your mother start at 30-50mg per day and over a couple of weeks, work it up to at least 100mg and maybe try for 150mg or so per day. I don't take it anymore, as I decided it wasn't helping me, and it wasn't cheap, but I know it has helped many people and think it's worth a try for anyone. Best wishes, Gus R.

Jon's November 20 reply to Gus R's November 18, 1999 - Howdy-doo Gus, Right you are. I went to Medline, looked up that trial and corrected the copy at Nutrient Stew. It should have read (and now does) 100mg per day. Thanks - no kidding. I try to keep mistakes to a minimum but if anyone spots one, please let me know. I like my pages accurate! :-) Also, Gus' advice is sound in my book on how to start CoQ10. If you want to give it a fair chance, I'd say work up to one mg per one pound of body weight. That ain't cheap, but if you don't see any benefit in 6 months, I'd give it up. Jon.

Gur R's November 21 reply to Sharon G's November 17, 1999 - Hi Sharon, I really wish I could give you some good advice on your mothers gas problem, but I can't. I sure hope someone else can because I need it too, but I don't have high hopes. Excessive gas seems to be a very common companion of CHF. I have it and have read of many others here who do also. Lanoxin may be part of your mother's problem but not mine. I recently dropped Lanoxin for another reason after taking it for several years, and there was no change in my gas problems.
     I think the gas problem is like many of our others. The digestive system doesn't get the supply of blood it needs to function properly, so it just works so-so, and we have another problem to add to our list.
     You are probably right about your mother needing more exercise, but you should check with her dox to be sure. Then you could try to get her to walk a little more, or whatever her dox suggest. How hard you try is up to you and her, but I would suggest that whether she has 2 years or 2 days left, you don't want your future memories of this time to be of you and her having fusses about things that didn't make all that much difference anyway. Best wishes, Gus R.

Bette, November 21, 1999 - Hi, The holidays are coming up again and I know this site gave me a lot of emotional comfort last Christmas. Believe it or not, my father is still alive but on a steady downward turn. He's not on oxygen yet, but he can no longer stand up or get out of bed. He is now on Zoloft and seems content to watch Tennessee football and the Lady Vols. This board is such a comfort to caregivers and family members. It makes us realize that we are not alone. I'm glad I found the board again!

Robin Lynn's November 21 reply to Brad H's November 15, 1999 - Hi Brad, Although I don't have any knowledge of the specific conditions leading to your son's problems, I can tell you some things about beta-blockers and their effects. You can also read about them on Jon's Coreg page and The Manual. I have been on 3 different beta-blockers. They are supposedly good for helping to control PVCs and some non-fatal arrhythmias. The worst side effect is tiredness. I am now on atenolol, which has had less side effects than the others. Beta-blockers help lower blood pressure and heart rate, thus decreasing the work load on the heart. You may notice a difference in his tolorence for activity and some possible weight gain. Also, some people experience some depression. I think it is because of lower activity. If you trust your cardiologist, I would say that this is a good way to go. Most people on this site are taking beta-blockers. The benefits to the heart will far outweigh the inactivity.
     Beta-blockers should be started at a low dose and worked up. When I was first started on them, my dose was 140mg a day and I couldn't move off the couch! I hope you find this useful and I sincerely hope your son will improve. I will pray for your son and your family. God bless you all.

Sharon G's November 22 reply to Gus R's November 21, 1999 - Hi Gus, Thanks for your note. I went back to the doctor with mom on Thursaday. He put her back on ½ of her Lanoxin and potassiumm and also gave her a shot of phenergan and pills to take 4 times day for nausea at home. She did well for couple of days. I got a call at 6:30 AM and went to the ER, where she again had severe nausea, vomiting and spasms all over. They thought it was her hiatal hernia this time, and gave her Zanax to take and sent her home again. The doctor said there was nothing else to do but try and make her comfortable.
     I came to the same conclusion about bugging her a long time ago. I just do as she asks, and grin and bear it. I really appreciate the input though. I hope you are feeling some better at this point.

Peggy E, November 22, 1999 - Hi Jon and everyone, My husband Carl, has a history of heart problems - heart attack and bypass surgery. We just recently found that he has an enlarged heart and heart failure. He has a lot of trouble sleeping, shortness of breath, and fatigue. He was referred to a lung and heart specialist who put him on Zestril and told him to come back in 7 weeks. Actually, it was his nurse who called and told us this since the doctor was apparently too busy to see him and give him a few minutes. Neither this doctor nor his regular cardiologist are heart failure specialists. We are just at the very beginning of this and have had to find out almost everything about what is going on with Carl on our own. I'm sure this sounds familiar to a lot of you.
     We are desperate to find a good heart failure specialist in whom we will feel confident. We live in Missouri. We found the names of 3 specialists/clinics in this state: Washington University School of Medicine in St Louis, St Johns Regional Medical Center in Joplin, and Cardiovascular Consultants in Kansas City. We know nothing about any of them. Are any of you by chance familiar with any of them, or do you have recommendations of any other doctor in our state or in a state near us? We would greatly appreciate any help you can give us. We have wasted a lot of time already with Carl being misdiagnosed for quite awhile and being referred from one doctor to another - none of which we feel at all confident or comfortable with. We don't feel we can afford to waste any more time shopping around if we can help it. Thank you for any and all help. I think your Web site is a wonderful thing.

Jon's November 22 reply to Peggy E's November 22, 1999 - Hi Peggy, I suggest trying MidAmerica Cardiology. They are now located at KU Medical Center. Jon.

Jim Spraker's November 24 reply to Gus R's November 20, 1999 - Hi Gus, Thanks for your response. I thought that I had forgotten how to do simple math - and I'm a teacher! My mom's cardiologist is very supportive of this treatment option, although he cautions that it works for some but not for others. I believe that as long as there are options, there's hope. Jim.

Peggy E's November 27 reply to Jon's November 22, 1999 - Hi, Thank you so much Jon, for your suggestion I try the Mid America Cardiology Web site. I also received an e-mail with another recommendation from another person who saw my post. I really appreciate the help of both of you. They are giving Carl and me a place to start. I hope your holiday was a really good one. Take care and God bless you. Peggy E.

Paul B, November 28, 1999 - Hi all, A story that occurred during the death of my mother in law is cause for some reflection. When one signs on for Hospice care, make sure there is a clear understanding on both sides of what is expected when the actual death is taking place. This circus ensued in the hours immediately prior to my mother in law's passing:
     As the time neared, the family, as instructed, called the on-call hospice nurse who whined that she was in the midst of dinner party preparations, but would come if it was necessary. In the meantime, the regular hospice nurse was also called and arrived. At the time, my mother in law was in acute respiratory distress. Due to a tumor in her throat, she was choking to death. Fortunately, her son, an EMT, and a close friend who was a physician's assistant, were at the home to do something about it. They put her on full oxygen (she had been on 2 liters through the nose) and summoned a friend who brought a face mask. This eased her breathing and allowed her to die a more peaceful death a couple of hours later. She was able to smile and kiss each of her children goodbye. I guess, mistakenly, we thought that was the point.
     When the hospice nurses arrived, they both objected to this, saying it had not been ordered by a doctor and the son was risking an immediate cardiac arrest by administering the oxygen. Like Elvis, they immediately left the building. It seemed they were upset that my mother in law wasn't dying on their terms. I do know that without her son the EMT, and the PA present, she would have choked to death due to lack of oxygen (a lousy way to die) and we probably wouldn't have known any better. I am not doing this to bash hospice but we definitely got a mixed bag here: Some wonderful volunteers who helped and some "professionals" who apparently had other agendas. My advice would be to take as much care in tending to the details of the end game as you would making sure everyone knows the DNR order.

Pat C, November 28, 1999 - Hello everyone, This is a very informative site. I have learned more here than I can even believe. I only wish I had found it sooner. My Aunt had a virus in 1991 and it settled in her heart. She has done well, I suppose, to be alive. They thought at the time she might only have 6 months. She was told to retire. She was a person of faith, very strong and never really worried about it. She had doctors interview her about 6½ years ago, and they asked her why she thought she was still here. She told them what I just said, that she believed she would go when it was her time, and she just said her prayers and went to sleep. She also never retired. She did have a pacemaker put in at that time. She had to have it replaced, simply because it was on recall. They punctured her heart and she almost died about 30 days later. She had to have open heart surgery to patch her heart. That's been 3 years ago.
     She has always been very tired and has had all the symptoms you have decribed with CHF. I wish I had read this sooner. Recently, she has developed a very bad cough. She would not go to the doctor for awhile. It kept getting worse and finally we went. We have been there 5 weeks in a row now, with her receiving antibiotics and cough medicine. Now her kidneys have blood present and she is on more antibiotics. Her blood work now is showing too high levels of Lanoxin and they have decreased that. What are toxic symptoms of Lanoxin? She is in a very bad way. Her cough is no better. It sounds so congested, yet not much of anything comes up. She says she feels like something is in her throat, sometimes she feels like a tickle or something. I know she is very tired and is just not nearly as well as she was just 3 months ago.
     She is 73, yet she was for the most part until now a young 73. Of course she does not do anything strenuous and we try to help her in every way. I just wonder if the Lanoxin caused this. Her doctor also said her thyroid function is now showing as low, but we would not worry about that at this time. She has never had such an array of things show up in one test. What do you think is going on here? Please help me understand better. She raised me and I am there for her. I wondered if I have been just fooling myself. Thanks in advance for any information. Pat C.

Jon's November 28 reply to Pat C's November 28, 1999 - Hi Pat, The most common effects of Lanoxin "intoxication" are heart arrhythmias, nausea, vomiting, visual disturbances (blurred, yellow vision or "colors"), headache and weakness. Breast tenderness is sometimes seen. Potassium imbalance may make digoxin overdose worse. I'm not sure that Lanoxin has anything to do with her condition, though. I don't know what other meds she is on, or any heart function test results. She seems to be showing classic heart failure symptoms, not particularly caused by any specific drug. Pump failure is often aggravated by advanced age, and as the heart fails, the kidneys begin failing also. Try posting a list of her meds and maybe we can spot something. Until then, I'd say she needs treatment for classic heart (pump) failure. Jon.

Pat C's November 28 reply to Jon's November 28, 1999 - Hi Jon, Thanks for being so quick in response. My aunt takes tamoxifcon, one baby aspirin, Lanoxin, was taking antibiotics but that's finished now, plus stayhiss - a decongestant. The doctor thought that the first trip, because of the congestion in her lungs, that she had pneumonia but when he came back in, he just said it wasn't. He seemed disgusted with her because she is still smoking. She has tried to quit and just can't. I suspected that smoking is for sure using up more of her oxygen. I have spoken to her about it and it upsets her so I just don't mention it now. She is a small women. Pat C.

Jon's November 28 reply to Pat C's November 28, 1999 - Hi Pat, If she is coughing, a doctor might find it difficult to tell if her cough is from lung congestion or smoking. My own smoker's cough got very severe after I got heart failure but a few months after I quit smoking, my cough disappeared altogether. Now, I only cough if I lie flat too long - that's my CHF "talking." Her smoking also speeds up her heart rate, making it difficult to know how much of her increased heart rate is heart failure and how much is stimulation from the smoking and the decongestant.
     A decongestant is almost never used in CHF patients. That's because they work by speeding up the central nervous system (CNS) and can put a CHFer at risk for arrhythmia - disrupted and irregular heart rhythm. If she is in heart failure, I would strongly question the use of a decongestant.
     Tamoxifen is to prevent breast cancer recurrence so I assume your aunt has recently had breast cancer. Did she? If so, did she have chemotherapy for it? Please let us know.
     Does she get edema - swelling in her legs, ankles or stomach? Does she get short of breath when lying flat? Is that cough with her pretty much all the time? Does it get worse when she lies flat? These are all signs of heart fauilure. Has her doctor sugested putting her on any heart medication besides Lanoxin, like an ACE inhibitor or a diuretic? Please let us know as much as you can about her current symptoms,ok? 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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