The paperwork never ends The Archives
Loved Ones - October, 2002 Archive Index CHFpatients.com

Deb F 10-2     update on my mom & more
 
Elaine M 10-2     seek CoQ10 experiences & more
 
Vonda 10-3     seek suggestions
 
Karen S' 10-4 reply to Judy's 9-8     condolences and more
 
Kelly S' 10-4 reply to Deb F's 10-2     best wishes
 
Kelly S' 10-4 reply to Vonda's 10-3     possibilities, prayers
 
Susan B 10-4     acute episode, insurance changes & more
 
Kelly S' 10-5 reply to Susan B's 10-4     insurers and doctors, and more
 
Carole K 10-7     update on my mom & more
 
Diana 10-8     is this the end - please help
 
Kelly S' 10-8 reply to Carole K's 10-7     hope your mom stays up
 
Mike W's 10-8 reply to Diana's 10-8     end of life?
 
Jon's 10-8 reply to Diana's 10-8     end of life?
 
Judy's 10-8 reply to Diana's 10-8     end of life?
 
Lois B's 10-9 reply to Diana's 10-8     end of life
 
Diana 10-8     thank you, it's frustrating & more
 
Carole K 10-9     seek experiences with Roxnall
 
Barbara 10-9     seek CHF info & more
 
Diana 10-9     update on my husband
 
Susan B's 10-9 reply to Barbara's 10-9     coping, finding info & more
 
Jon 10-10     just a note
 
Kelly S' 10-10 reply to Diana's 10-8     sharing my experience
 
Kelly S' 10-10 reply to Mike W's 10-8     talking about death
 
Barbara's 10-10 reply to Susan B's 10-9     coping
 
Carl 10-10     see post on other message board
 
Kelly S' 10-10 reply to Jon's 10-8     end-stage illness
 
Kelly S' 10-10 reply to Judy's 10-8     I agree
 
Kelly S' 10-10 reply to Lois B's 10-9     it must be hard
 
Kelly S' 10-10 reply to Barbara's 10-9     hoping you have a better week
 
Kelly S' 10-10 reply to Susan B's 10-9     husbands!
 
Carl 10-10     supplements
 
Donna H 10-11     supplements & alternative treatments - anyone?
 
Kelly S' 10-11 reply to Carl G's 10-10     thank you for sharing
 
Kelly S' 10-11 reply to Carl G's 10-10     staying positive helps
 
Kim S 10-12     seek low sodium Thanksgiving info
 
Jon's 10-12 reply to Kim S' 10-12     low sodium links
 
Kelly S' 10-14 reply to Kim S' 10-12     low sodium Thanksgiving meals
 
Myrtle C's 10-14 reply to Diana's 10-9     end-stage heart failure experience
 
Myrtle C 10-14     a little humor goes a long way
 
Myrtle C's 10-14 reply to Barbara's 10-10     it's hard to be the watcher
 
Kim S' 10-14 reply to Jon's 10-12     low sodium Thanksgiving resource & more
 
Carole K 10-14     update, seek hospice info
 
Diana S 10-15     why take 2 ACE inhibitors?
 
Roseanne S' 10-15 reply to Carole K's 10-14     hospice care
 
Jon's 10-15 reply to Roseanne S' 10-15     hospice care question
 
Donna H's 10-16 reply to Diana S' 10-15     blood pressure medicine experience
 
Diana S 10-17     update, watch your meds! & more
 
Roseanne S' 10-17 reply to Jon's 10-16     that's a Medicare-only change
 
Carole K 10-17     seek explanation of echo report
 
Jon's 10-17 reply to Carole K's 10-17     a layman's version
 
Kelly S' 10-18 reply to Diana S' 10-17     glad you checked those meds!
 
Heidi 10-18     seek milrinone & dobutamine experiences
 
Rita 10-18     grieving
 
Anne's 10-19 reply to Heidi's 10-18     experience with milrinone and Natrecor
 
Kelly S' 10-19 reply to Heidi's 10-18     wishing you well
 
Kelly S' 10-19 reply to Rita's 10-18     it is very difficult
 
Beverly 10-21     my hospice experience
 
Heidi's 10-21 reply to Kelly S' 10-19     time will tell
 
Roseanne S' 10-21 reply to Heidi's 10-19     our experience - hang in there
 
Lisa Z's 10-21 reply to Rita's 10-18     condolences
 
Carole K 10-23     guilt, what to do? & more
 
Jennifer 10-23     seek CHFers who had a knee replaced
 
Annie G's 10-24 reply to Carole K's 10-23     time of day may be important
 
Carole K's 10-25 reply to Annie G's 10-24     I'll check, thanks
 
Carole K 10-25     update - not good
 
Kelly S' 10-26 reply to Carole K's 10-25     hoping for a good Thanksgiving for you
 
Carole K's 10-29 reply to Kelly S' 10-26     thank you for your post
 
Deb's 10-29 reply to Carole K's 10-25     you are in my prayers
 
Lois B 10-29     seek laser surgery info
 


Deb F, October 2, 2002 - Hi All, My prayers go to all of you who have lost a loved one lately. I just wanted to post an update on my mom. She's been in the hospital a couple more times over the last couple of weeks, and on Monday when she got out of the hospital she went to live in a nursing home short-term while Medicare is covering it. It is hoped that she will build up strength and get well enough to stay out of the hospital. This is the goal.
     I don't know what diuretic med she is on but I know it's 3 of them, with one being Lasix at 160mg a day and then 2 more. She is on a 1200 calorie a day diet, with low sugar and low salt of course. She still has some congestion and is using oxygen 24/7. It would be good if she could come down on the use of the oxygen.
     Hopefully she will get better while in the nursing home. She is only 65 and the youngest person in there. She wants to be home, so hopefully this will work. I had a tough time last week dealing with putting her in a nursing home but I now feel some relief that she has constant supervision. My dad hasn't been very well so he can't do what she needs and I know when she comes home I will have to help out more than I have, especially with the housework and seeing that she has her meds.
     Thanks for this forum. I don't check daily but when I do I feel better knowing there are others out there who know what I'm going through. Thanks for all your support! Deb. debkay@xtratyme.com


Elaine M, October 2, 2002 - Hello, I am a mother of an 18 year old daughter I'll call J, who suffered a viral myocarditis at the age of 2 1/2. The viral infection left her with dilated cardiomyopathy. She has done well over the past 16 years but obviously has limited energy. We were warned that the puberty years could see problems develop, growth spurts an ailing heart may be unable to cope with. She is now 5'6" tall and weighs 125 lbs, keeps active riding horses and until May of 2002 took only digoxin (Lanoxin).
     However, her annual check with her cardiologist in May of 2002 showed a dramatic decrease in heart function. The doctor put her on a blood pressure med and a beta-blocker. Fortunately, she had no adverse reactions to the meds. Our next checkup was July of 2002. At that time, the doctor thought there was again a sight decline in heart function. Her meds were changed again to double the blood pressure med and a change of beta-blocker to a newer alpha/beta-blocker. She still takes the digoxin.
     Our next visit to the doctor will be October 15, 2002. Since hooking up to the Internet 2 weeks ago, I have been desperately searching for some new treatment or therapy that could help my daughter. The only information of any interest is on Coenzyme Q10. I have read of several studies conducted on groups with DCM. Most show very positive results with a few showing no changes in the volunteers' overall condition. The most information on CoQ10 is from nutraceutical manufacturers and resellers. Their information is obviously biased and not always based on real scientific study. Has anyone out there had any personal experience with CoQ10? Has anyone broached the subject with their cardiologist?
     I can't just sit back and watch my daughter's health deteriorate to a point where she will need a transplant. I've seen the stats, I know the risks. My son died of viral cardiomyopathy in 1982. He was 16 months old. Doctors had no idea what was wrong with him. He spent 2 1/2 days in the hospital before succumbing to heart failure. The medical community failed me once and I won't let them do that again.
     I live in British Columbia, Canada, and our pediatric cardiologist is at BC Children's Hospital. If I can produce enough info on CoQ10, perhaps she would be helpful in a trial use. Any help you can offer would be greatly appreciated! Thanks. elainemalcolm@shaw.ca


Vonda, October 3, 2002 - Hi, My mother hasn't been in the hospital since May. The CHF specialist did say that she was in last stage of CHF. She has done really well for the past couple of months on a day to day basis, shopping, some housework, and good appetite. This past week however, she has more shortness of breath, fever, some congestion, and nausea. Her CHF specialist said that it was bronchitis and gave her an antibiotic but she gave the diagnosis over the phone. I am concerned that it may be something more. She did say to bring her in if she didn't get better in a couple of days but I will worry in the meantime. Any suggestions? Thanks. jmgandme@aol.com


Karen S' October 4 reply to Judy's September 8, 2002 - Hi Judy, I am so sorry for your loss. I know someday I will probably be in your shoes. It is commendable that you are thinking about others at this time and I hope that I will be able to do the same. People like you are an inspiration to us all. Thank you for your willingness to share with us. I will remember you in my prayers, Karen S. gstilley@hotmail.com


Kelly S' October 4 reply to Deb F's October 2, 2002 - Hi, My prayers go out to you. I know this couldn't have been an easy decision, but am hoping that the end results are good ones. larkel@locl.net


Kelly S' October 4 reply to Vonda's October 3, 2002 - Hi, I'm surprised that she wasn't seen by the doctor. When my father was still at home, we had the visiting nurse come in a couple of times a week. Are there any programs such as this in your area? I am praying that your mom's feeling better soon. larkel@locl.net


Susan B, October 4, 2002 - Hi all, Saturday my husband had two dizzy spells. I started calling the doctor's office and insurance company to get in to the CHF doctor on Monday. Because of an insurance mixup, he did not get in to the doctor until yesterday. Well, he was back in a-fib. He was cardioverted in February of 2001 and had stayed in rhythm until now. At least we think he was in rhythm and all his tests said he was. After blood test the doctor cardioverted him yesterday. He is doing well.
     This was so out of the blue. He has been doing so well. It just goes to show that you must stay on your guard and watch. He has been taking his meds, weighing, and watching his salt. He would not have even gone back to the doctor if I had not pushed. He says he felt a little sick, but okay. He went to work and I had to get him to come home to go to the doctor. I made him rest until we got the insurance thing worked out and got him into the doctor. I am so happy that we caught this before it went really bad. Again, he looks fine and you would never know that he has CHF.
     The bad thing is the insurance company started saying we have to change CHF doctors because the hospital our current doctor is at is not on their list. Before we picked this insurance we talked to them about this doctor and they told us that my husband had a referral until next April when the insurance changes again. The last thing I needed to worry about yesterday is the insurance company changing its rules. They said that after this we will have to transition to a new doctor. I don't see that happening.
     You all know how hard it is to find a doctor who is a match. Most doctors run like rabbits when they find out I am an attorney, with a very strong will, and that I read and follow-up on the information at the doctor visits. I question everything and I just cannot help myself. I do not think anyone in this world is perfect, including doctors. We have only 2 or 3 doctors who do well with this and my husband's CHF doc is one of them. I will have work transitioning to a new insurance company. I may spend part of today writing to the insurance commissioner and learning about insurance laws in my state, while I visit my husband at Club Med.
     I needed to vent. Thanks for being here. It means a lot to me that I can write and know that others understand. As always Jon, thanks for your hard work. Susan B. gbratcher@kc.rr.com


Kelly S' October 5 reply to Susan B's October 4, 2002 - Hi, I am so glad you got your husband in so very soon. I'm with you that insurance shouldn't dictate who your doctor is. If your husband's doing well with this doctor, then maybe the insurance provider should add this doctor to your coverage? Maybe you could write them a letter. Good luck on this. I'm praying that your husband continues to improve. Sounds like a mighty lucky fellow to have such a persistent and loving wife, sometimes they just don't know, do they? larkel@locl.net


Carole K, October 7, 2002 - Hi everyone, I haven't posted in awhile and just wanted to give you an update on my mother. You may recall that she is 87 with end-stage heart disease. Since her referral to hospice last month I have seen improvement in her quality of life. Her edema is under control, her thought patterns seem to be clearer, and I was even able to take her out of the nursing home Saturday for lunch and a movie.
     I don't know what has caused the change except for more frequent monitoring by hospice personnel. I also wonder if the old saying, "you get better before you get worse" is applying here but it doesn't matter - I enjoyed my time with her and she with me. Love to all and enjoy life no matter what. Carole. ckennedy@appliedtm.com


Diana, October 8, 2002 - Hi, I've been reading this forum lately looking for help. My 85 year old husband has CHF and emphysema. He's not on oxygen. They tell us that his oxygen levels are too high to need it, at 93 or so. He had a pacemaker implanted in March. He's in end stage COPD along with the CHF. He seems to be getting weaker and weaker every day and I am getting so worried about him.
     He's in and out of the hospital - about 8 times since March - and seems to be at the ER every other week or so. He gets out of breath with the least little movement, and even getting out of his chair wears him out and he pants for breath for 5 to 10 minutes afterward. He watches his salt and weighs daily, is on Demadex and all the other standard medications, but he's just so weak.
     Can someone please tell me if this is to be expected? I ask his doctor and just get that he's doing fine, even though he keeps gaining a pound or two every 2 or 3 days. The home health nurse says she thinks he doesn't have very long left. I guess that's what I want to know: if the weakness and other things going on with him mean the end is near.
     It's just heartbreaking to watch what he is going through. I don't have any help at home except the nurse who comes in once or twice a week to check his blood pressure and so on. I have a full-time job I have to be at every day. I guess I'm just feeling overwhelmed and don't want to face the thought of losing him. Does anyone have any encouragement or advice, please? Diana. dianadeewilson@yahoo.com


Kelly S' October 8 reply to Carole K's October 7, 2002 - Hi, I'm glad to hear that your mom's feeling better and that you were able to spend a wonderful day together. I'll continue to pray that she continues on the road to better health. larkel@locl.net


Mike W's October 8 reply to Diana's October 8, 2002 - Hi Diana, I really don't want to sound cold (I'm not) so I'll take the risk of maybe offending you. Pain, fear, and loss all hurt, regardless of age. I understand your fear, anxiety, and distress. Your husband may outlive me; I'm 55 with CHF. Probably no one can at this point tell you for sure, including doctors.
     However, at 55 I'm pretty much aware of my mortality around the clock. Maybe I'm weird or maybe it's the fact I have CHF. I don't pretend that I have come to terms with my own death, but in my own mind it's kind of part of my "job" to do so.
     I think, regardless of one's physical health, there's a time in one's life where one has to kind of look death in the face and start to try and cope with it's inevitability for us all. There's no age at which this is proper but it seems that at age 85, with chronic illness, your husband must have thoughts and feelings about his mortality. Do you two ever discuss it? I'm sure he has his own fears and anxieties, we all do.
     I'm not condemning your husband to death, I'm just concerned that you and he (mostly you, as the person writing the distressed and pained post) are not preparing for what is awaiting us all. Many people avoid the time they have to try to come to terms with, make sense of, become closer with, each other because of it. It can be lonelier and sadder for everyone when the possibility and eventuallity are not addressed.
     That's what I'm concerned about with you. I truly wish your husband and yourself the longest life you wish to live. Peace, Mike Wafkowski. mikeyw@sohogurus.net


Jon's October 8 reply to Diana's October 8, 2002 - Hi Diana, I think Mike says some very true and important things, and says them well. However, if I read your post correctly, I think maybe you're upset about the uncertainty of your situation. It's easier to face death when you either have no idea it's coming, or when you know pretty much when or at least how it's coming. To know it's close, but to have no idea how close is more than unsettling, it's disturbing.
     This is an issue I have pushed and will continue to push with the cardiology group I am working with. What does end-stage really mean, how do we know when it has been reached and to what degree if there are degrees, and what exactly can we expect? I don't expect any doctor to know what will happen but I do expect them to come right out and say what can happen and when it will probably happen if it is going to do so; so we have less uncertainty about that, at least.
     Unfortunately, I cannot tell you these things right now because I have not lived them.What I can say is that usually death occurs from heart failure in one of two ways: pump failure or sudden death.
     Pump failure is slow and unpleasant. It means the heart just grows weaker and weaker until it falls so far behind that fluid fills the lungs and you drown - in a nutshell.
     Sudden death can be quick and violent, or quick and easy. You die very fast, usually when the heart's electrical system seriously malfunctions. It can be dying in your sleep and never feeling that death, or dying in cardiac arrest while awake.
     However, the real questions are usually, "When?" or "How long?" I don't know. I am hoping to get some kind of general consensus out of this group of doctors and if I can - and I will be pushing hard for it - I will publish that consensus on site.
     I am sorry I cannot help you with your incertainty, but I certainly sympathize with it - I may face it myself some day in the near future. I find a great deal of comfort in Christ Jesus and I turn to Him daily. I wish I could wiggle my nose and send you some of that peace, but I can't. Don't give up and don't try to be prepared for everything, just be there for your husband regardless. Jon.


Judy's October 8 reply to Diana's October 8, 2002 - Hi, I have e-mailed Diana but after reading Mike's and Jon's posts I feel that I need to add something here. You guys are both so right. As I told Diana, hospice gave me a booklet when Jim signed on entitled, "Gone From My Sight." It is about the dying process and things you may find or see and a timeline of sorts. It helped to have some idea but no one will attempt to give you a good estimate of time because that is God's work, not our work.
     I prayed long and hard for a sudden death as I had heard the stories of CHF death of drowning. I thank God that Jim's death was quick, if you can call 4 days quick. The most important thing is something Mike said: talk about it with each other, know what he wants, cry together, learn to value that precious time and subject. I am so glad that even though our talks were always short and at odd times, we did have them and I know he was ready and so was I. That doesn't diminish the hurt at all. God bless all of you in your suffering and I pray for all of you each day. jmiles@mhtc.net


Lois B's October 9 reply to Diana's October 8, 2002 - Dear Diane, I know exactly how you feel. My husband who is 66 is end-stage but he has more angina than the breathing problem. He cannot walk but a little way now without it causing him difficulty. We were at the ER twice last week before they kept him the third time because his enzymes (troponins) were elevated. The visiting nurse told me that meant another heart attack.
     Now he is home again. We've increased his nitrates and Lopressor, and the visiting nurse is taking a full blood test every Monday. She is here to give him his Lasix shot 4 times a week and change his dobutamine twice a week. She is such a help in my understanding what is going on. Fred's world is getting smaller. His layback chair and his TV are now his life.
     My strength comes from the Lord, but the more information I get from visiting nurse, doctors, and the computer helps me make a realistic assessment and realize that at any time our lives may change and I will begin a new chapter of my life alone. That may be tonight or next week but it is inevitable.
     I have worked through the pain and fear and know the Lord has a plan. My heart goes out to you and I hope Jon will be able to follow through with the doctors about more end-stage information. Lois. lsom1017@aol.com


Diana, October 9, 2002 - Hi everyone, I appreciate your replies. It really helps to know that there are people who can understand what we're dealing with. Jon, you're right - it's the uncertainty that makes things so difficult, at least for me. I want to be with my husband during his last days and want to be able to plan for that with my job. I'd like to know what to expect, symptom-wise, etc. However, I know the future is in God's hands and we just have to trust in Him to take care of the details. My faith is strong, however humanly I still want to be able to have some control over all of this.
     Actually, my husband is a little better today than he was yesterday, more able to move around without being so much out of breath. That's another thing I don't understand about this disease, the ups and downs that go with it. Each "down" makes me wonder if it's getting close to time, and each "up" gives me more hope that I'll have my husband a little longer.
     Anyway, thanks to all of you for listening and replying. It really does help to voice my concerns to people who are going through the same things. When friends or co-workers ask me how things are, I either say okay or not so good, but can't really tell them how this disease affects us and how worried I get. I am praying the Lord will bless each of you with a good day! Diana S. dianadeewilson@yahoo.com


Carole K, October 9, 2002 - Hi all, I had a conversation with the hospice nurse today and she said that she was going to give my mother (87 years old with end-stage heart disease) some Roxnall (not sure of the spelling). Has anyone had any experience with that med? Thanks for anything you can tell me. Carole. ckennedy@appliedtm.com
 
Jon's note: Roxanol is morphine


Barbara, October 9, 2002 - Hi, My husband had a really bad attack of CHF this weekend for the first time since we have been married, 9 years. He has had a bad heart for years, with 5 bypasses 4 stents, and 2 heart attacks. He has never been as sick as he was Sunday. When I got him to the hospital they did a blood test and his numbers were 1040. His blood gases were 56 and his oxygen saturation dropped every time they took him off the oxygen.
     He also has COPD so it was a toss up who to turn him over to, the heart docs or lung docs. The lungs won since they were considered worse at the time. I know so little about CHF, any information anyone can give me will help. My husband is a heavy smoker and I don't have much confidence that this will make him quit. His lung doc told him this morning that if he didn't quit, he would die. The cardiologist basically told him the same thing yesterday. He has 3 blockages now that they can't fix and with his lungs so bad, they can't do a cath or stress test to see if more blockages are there. barbara.rogers@trw.com


Diana S, October 9, 2002 - Hi, What a difference a day makes! I took my husband to the ER this morning at 4:00 AM. They did all the usual things for him: breathing treatments, steroid shot, Lasix shot, oxygen, and he was feeling much better, at least better for him. The ER doctor came in and said he was having, "some congestive heart failure and his emphysema was acting up" and they were going to admit him.
     We were going, "What?" The doctor said, "We have to." So they had him in a room in 2 hours, a record for our ER. His doctor came in while I was still there and said he wasn't "moving air" very well and said he was going to call in the pulmonary doctor. He came after I had gone on to work so I don't know what they'll do now, but at least my husband is in the hospital where they can take care of him for awhile and hopefully get him well enough to come home again.
     This disease is so frustrating! You all have been so good to respond with advice and encouragement so I wanted you to know what is going on with us. Diana S. dianadeewilson@yahoo.com


Susan B's October 9 reply to Barbara's October 9, 2002 - Hi Barbara, We have all been there - the unknown illness. Get ready to read because Jon has so much information here. I suggest that you read a little at a time, maybe an hour and then rest and think. There is so much information here and you need to be sure you have processed it so that you can use it. Start with The Manual; it is wonderful. So my advice is "Read The Manual."
     I love the links from this site. We use the weight charts from Heartfailure Online. We show the videos to help people understand. There is not a part of this web site that we have not learned something helpful from.
     Take care of yourself too. You are in our prayers. Ask questions if you want. One of the best parts is that here you get to vent with others who understand this illness and what it does to everyone, not just the person who has CHF. I am so thankful to have a place to vent. I would have lost my mind if I could not do that any more.
     You cannot make good decisions if you don't know what is going on. Asking for information is a great first step. You have to ask questions and you will have to work at this with him if you want to keep him alive.
     I read the information as if my husband's life depends on it - because it does. My husband looks good and does not act sick. If you ask him, he would tell you he is well. He was in a-fib last week and was cardioverted. He said that he was fine, but I could tell we needed to check it out. Today, he has been doing a little of this and a little of that, like laundry and dishes. He would rake the leaves if I would let him. He tells me that if he just takes his time he can do almost anything. However, if he gets a little sick he goes downhill so fast.
     Good luck and again you are in our prayers. Susan B. gbracher@kc.rr.com


Jon, October 10, 2002 - Hiya folks, I have to go run an errand so some more posts will be up later this afternoon. They are coming, though. :-) Jon.


Kelly S' October 10 reply to Diana's October 8, 2002 - Hi, My father had COPD, but was on oxygen. He had up and down days right up until the end. It seemed that the weather had a lot to do with how he felt too. When the humidity was very high it was much harder for Dad to breath. I'd say in the last year of his life he was in and out of the hospital 3 to 4 times. The last time he was put on a ventilator, but was taken off it on his 78th birthday.
     However, he wasn't well enough to go back home. When he finally passed, he was in a coma and peacefully slept away. I'll never forget that morning in April, it was a sunny morning, my brother and I discussed how Dad would've been getting ready to go fishing if he were still healthy. Thanks for allowing me to share, it's helpful. Here's hoping that your husband improves and is able to enjoy his time. larkel@locl.net


Kelly S' October 10 reply to Mike W's October 8, 2002 - Hi, I don't think this post was negative in any way, just very direct. Death is such a taboo subject and most people don't even like to talk about it. I'm thankful for each day and live it as fully as possible. We never know when our time is up. larkel@locl.net


Barbara's October 10 reply to Susan B's October 9, 2002 - Hi Susan, Thanks for the reply. I do have a lot of reading and comprehending to do. One of my main concerns now is that my husband is not quitting smoking. I called him a few minutes ago and he was in the garage - his smoking heaven - with coffee and cigarettes. He said he wasn't going to buy any more but I have heard that before. His blood pressure is still low and he is still SOB. barbara.rogers@trw.com


Carl G, October 10, 2002 - Hi, See my story posted on the CHF patient side of this site. Regards, Carl G. pagoo@rocketmail.com


Kelly S' October 10 reply to Jon's October 8, 2002 - Hi, I agree with your post. I'm sure at times doctors are frustrated too. They deal with this day in and day out. I know that's what they've been trained to do, but sometimes maybe they don't know either. I think end-stage is different for every person, depending on a lot of things, their physical condition, age, mental condition and surroundings.
     When my uncle found out he had liver cancer and there wasn't anything they could do, he just shut down! He wouldn't talk to anyone and wouldn't eat. My uncle was a dear man, who worked hard all his life and was about to retire when he was told of his circumstances. Sometimes I wish he would've at least talked to us but this was his way of coping with the news he was given.
     My prayers go out to all of you dealing with this issue, but it is an issue we should all be more open about. Sharing with each other is a great way to do this. larkel@locl.net


Kelly S' October 10 reply to Judy's October 8, 2002 - Hi, I'm glad you have information to share with Diana. You are so very right that communicating with one another is helpful in relieving the stress in times like these. Great post. larkel@locl.net


Kelly S' October 10 reply to Lois B's October 9, 2002 - Hi, I'm glad you have some support through the nurse. I will be praying that you and your husband are able to spend quality time together. Losing someone you love or even knowing that you're going to lose them is never an easy thing to deal with. However, I think we'd all agree that we wouldn't want them to suffer endlessly for a long period of time. larkel@locl.net


Kelly S' October 10 reply to Barbara's October 9, 2002 - Hi, My prayers go out to your husband and you. I am hoping that something will help your husband quit smoking. I know how difficult it is since I'm a smoker and I know when I'm stressed out I tend to smoke more. I know, I know, kick myself, I definitely need to quit. I am hoping that the rest of the week gets better for both of you. Give your husband a big hug and let him know you love him. ;-) larkel@locl.net


Kelly S' October 10 reply to Susan B's October 9, 2002 - Hi, My husband is the same way! He trys to do more than he should at times and then tends to pay for it for several days. Will they ever learn? I've learned to cope with some of his antics, but there are times when the old foot comes down. I know that I'd probably be just the same way and want to do as much as I could, but it seems like sometimes they test their limits. larkel@locl.net


Carl G, October 10, 2002 - Hi, I found Jon's info on CoQ10 very interesting. I would like to note that I have been on CoQ10 for the past 10 years. My dose ranges from 60mg to 75mg three times a day. I take many other daily supplements, some of which my doc says are a waste of money.
     With all due respects to technology and new drugs, I still take my daily regimen of supplements, of course with my doctors' knowledge. I also have my supplements listed on my Vial of Life, which I carry in several places, including on the dash of the van. In 1992 I started with a diagnosis of idiopathic dilated cardiomyopathy, and an EF of 12%. With meds and the heart-health program and a drastic life style change, and taking medical retirement at age 40, my EF climbed into the 20s and even upper 20s before going down to 17% in 2001. Today is good, because God has made it. Carl G. pagoo@rocketmail.com


Donna H, October 11, 2002 - Hi, I have been reading so much about CoQ10 that I went out and bought some for my husband. It is only 30 mg but I thought maybe it was better to start with a lower dose. Is 30mg enough to do any good? I am having some trouble getting him to take it because he is on so many medications.
     When he first left the hospital after getting his pacemaker, he was down to 4 pills per day from a high of 17! Then he went into heart failure and they started adding things. Now he is up to 10 pills. I checked this site and from the looks of things, everything he is taking is necessary.
     He has been in a-fib for over 2 years now. The doctors tell us that he will probably always be in a-fib but he is going to an acupuncturist to see if that will help. He has a great deal of faith in it and since it makes him feel better, I encourage him to try it. We go back to his cardiologist next week after 4 weeks of acupuncture. I will be interested to see if the doctor notices any difference in his heart beat.
     Has anyone else had any experiences with alternative treatments in conjunction with the more traditional treatments? herdrich@grm.net


Kelly S' October 11 reply to Carl G's October 10, 2002 - Hi, Your story (on the other message board) is very interesting and good. Thanks for sharing it with us. larkel@locl.net


Kelly S' October 11 reply to Carl G's October 10, 2002 - Hi, I like your positive attitude. My husband and I were talking the other day. He told me when he found out almost 3 years ago that he felt like giving up. I'm one to believe that a disease like this is a sign that changes are needed, but that life can go on and with good quality. Here's hoping that your EF improves. From your posts, it sounds like you're on the road to the end result. My prayers go out to all CHF patients. I'm sure it's not easy living with this disease. larkel@locl.net


Kim S, October 12, 2002 - Hi everyone, It's been a few months since my mom got her biventricular pacemaker and all the objective tests say she's doing remarkably well. She's coming to visit for Thanksgiving and she's decided to retire and move closer to us in December, so she can help out when my baby (her first grandchild) gets here! I've been worrying about holiday meal preparations though, and I thought I remembered seeing a sample Thanksgiving meal with low-sodium recipes somewhere, but I can't find it now. Any ideas or suggestions? Thank you all so much! kimseaton2000@yahoo.com


Jon's October 12 reply to Kim S' October 12, 2002 - Hi Kim, Take a gander at the links page. ;-) Jon.


Kelly S' October 14 repy to Kim S' October 12, 2002 - Hi, Here's hoping you have a wonderful Thanksgiving with your Mom. Any recipe used usually calls for the addition of salt, but omit it. Most likely it's not needed. If you feel the receipe needs more flavor, try adding your favorite herbs. Remove the salt shaker from the table and only use pepper or Mrs. Dash has a table version of seasonings. I hope everyone has a healthy and happy Thanksgiving. larkel@locl.net


Myrtle C's October 14 reply to Diana's October 9, 2002 - Hi, I will send you an e-mail about my mother's experience with end-stage CHF. It can be a time that is not terrible. Hospice helped us keep her comfortable enough that she had no fear, nor did she drown with congestion. Her heart gave out as she slept one night. God bless all who have loved ones with this problem. Do call Hospice and get some information before you need it. omie@axs4u.net


Myrtle C, October 14, 2002 - Hi, My mom (Omie) was dying of CHF, her 3 teen great grandchildren visiting often. As she got weaker, they told her, "It is okay, you can go." They were thinking that they were giving her help to die easily, but she looked up weakly and said, "I don't have to go (urinate)!" We all had a smile. A little humor does help and mother had no idea she was providing it. Bless her. omie@axs4u.net


Myrtle C's October 14 to Barbara's October 10, 2002 - Hi, I am sending you an e-mail, too. Smoking can be more addictive then cocaine. Don't make him feel guilt on top of everything else. I know your love for him makes this so difficult to see. Be there for him and with him. Love and prayers dear Barbara. omie@axs4u.net


Kim S' October 14 reply to Jon's October 12, 2002 - Hi, I found it! Thanks, Jon. The first link has a sample Thanksgiving meal plan with recipes for each dish. You are a wealth of information and resources! :-) kimseaton2000@yahoo.com
 
Jon's note: I have lots of help!


Carole K, October 14, 2002 - Hi All, Well, they have decided not to give my mother Roxanol at this point. The hospice nurse said that she thought that my mother would live longer than the 6-month time frame and that her quality of life would be impared if they were to give her Roxanol at this point. That sounds like a little good news to me! However, I know that the prognosis is still the same. Does anyone know the details about extending hospice care past the 6-month time frame? Thanks for any info you can give me, Carole K. ckennedy@appliedtm.com


Diana S, October 15, 2002 - Hi again, My husband was able to come home from the hospital Sunday afternoon, and he says he feels pretty good. The home health nurse says he sounds (lungs) better than she's ever heard him and he was not having as much shortness of breath today. His oxygen levels are up and blood pressure okay, and his swollen ankles are almost back to normal. Whatever they do in the hospital must work pretty well. However, I know it's just short-term because he always goes back downhill after a few weeks.
     I have a little more peace of mind about leaving him while I work since we had Lifeline put in today. Hopefully he won't ever need it but if he does, now he can just press a button and will be able to get some help immediately instead of having to try to call me at work.
     I do have a question. The doctor (not his regular doctor) who dismissed him from the hospital prescribed Altace and Zestril (Lisinopril). Our Zestril label says it "replaces Altace" (it's from the VA pharmacy) and I question giving him both medicines at the same time. He was not on Altace in the hospital. The home health nurse says if we felt like it was a mistake or if maybe it was an unnecessary duplication, he didn't have to take the Altace.
     Does anyone have any idea why the doctor would prescribe both of these medications? From what I understand, they are high blood pressure medicines and Kelly's blood pressure has a tendency to be low. It is 90/50 today. I called our doctor's office and of course, he is out of town for a week and his nurse just said, "Take whatever the hospital discharged him with." I am relieved my husband is better for now, and surely don't want to do anything that would cause his blood pressure to go any lower! Diana S. dianadeewilson@yahoo.com


Roseanne S' October 15 reply to Carole K's October 14, 2002 - Hi Carole, New rules allow a PCP to renew your mother's contract with hospice for an additional 6 months, as many times as she needs it. Hospice is no longer only for the last 6 months. Roseanne S. rschurick@hillcrest-gcc.com


Jon's October 15 reply to Roseanne S' October 15, 2002 - Hi Roseanne, That's a Medicare coverage change, isn't it? If other insurances are used to pay for hospice care, would that still apply? Jon.


Donna H's October 16 reply to Diana S' October 15, 2002 - Hi, My husband's blood pressure is in the same range as your husband's, so I questioned the doctor when he took him off Lisinopril (because it made him cough) and then prescribed a new blood pressure medicine. The doctor told me that blood pressure meds also help to strengthen the heart so he needed to be on one.
     If you get a chance to talk to the PAC med person at VA, they should be able to clear it up for you. We have found that sometimes the pharmacists at the VA can give us more information than the doctor. Good luck! herdrich@grm.net


Diana S, October 17, 2002 - Hi, The home health nurse came by today and checked on my husband. He'd been eating lunch and when she took the pulsox reading, it was at 87, then went to 86. That's the lowest it's ever been. She said it might be due to the exertion required to digest food. Anyway, it was good enough for Medicare so he now has oxygen!
     He had a bad night last night, being short of breath, so hopefully having the oxygen here at home will help that. Also, when she called the doctor to report the pulsox reading, she explained what I thought was a mix-up with the Altace and Lisinopril. Lo and behold, they said use one or the other, but not both! If we had been willing just to do exactly what the hospital discharge orders said, he might have ended up back in the hospital already. I guess you all know the importance of watching your medicines, but it really brought it home to us.
     Thanks for letting me ramble on, it helps to get my thoughts out since I have no one to really talk to except my husband and I hate to keep worrying him with my worries. He has enough to do just to try to stay well! God bless all of you who have to cope with this same type of situation, either the illness itself or as the caregiver. Diana S. dianadeewilson@yahoo.com


Roseanne S' October 17 reply to Jon's October 16, 2002 - Hi, It is a Medicare change. I have no experiance with hospice and other insurance, and way too much with Medicare. Roseanne S. rschurick@hillcrest-gcc.com


Carole K, October 17, 2002 - Hi all, Finally after over a month I was able to get a copy of my mother's last echo report and I hope someone out there can decipher it for me. It reads as follows: "Marked left ventricular dysfunction with decreased ejection fraction (20%). Aortic valve leaflets calcification with mild aortic valve regurgitation and perhaps mild aortic sclerosis. Mitral valve sclerosis with moderate mitral regurgitation. Severe pulmonary hypertension with mild pulmonic and severe tricupid regurgitation."
     Please help with some plain English. Thanks. Jon, your site and your friends have been so wonderful. God bless you for starting this site and for all your work to keep it going. Carole K. ckennedy@appliedtm.com


Jon's October 17 reply to Carole K's October 17, 2002 - Hi Carole, Thanks. :-) I'm not a doctor, but here's what I think it means: "Marked left ventricular dysfunction with decreased ejection fraction (20%)" means weak heart pumping action. EF is explained here. "Aortic valve leaflets calcification with mild aortic valve regurgitation" means the aortic valve flaps are stiff and that valve allows some backwash, not forming a tight seal. "... and perhaps mild aortic selerosis" means some tissue there has hardened. "Mitral valve sclerosis with moderate mitral regurgitation" means that the mitral valve flaps and/or muscles have hardened and become somewhat stiff, with some backwash because the valve no longer forms a tight seal. "Severe pulmonary hypertension" is explained at www.chfpatients.com/ph.htm. "... with mild pulmonic and severe tricuspid regurgitation" means the pulmonic valve is a little leaky and the triscuspid valve is very leaky, again not forming a tight seal and allowing backwash. Jon.


Kelly S' October 18 reply to Diana S' October 17, 2002 - Hi, I am glad you questioned his meds. You'd have ended up back in the hospital had you used both! larkel@locl.net


Heidi, October 18, 2002 - Hi, My 46 year old husband is presently hospitalized for IV milrinone treatment. He has been on a heart transplant list for 7 1/2 months due to cardiomyopathy and CHF. His previous hospitalization for dobutamine treatment a month ago wasn't very effective. This drug has been effective but now comes the weaning off it, if it is possible.
     Today's lowering in dose from 0.7 to 0.6 has left him wilted and with stomach pain, maybe a coincidence? The staff at our hospital don't know what to expect. Does anyone have any experience with this? I had realized that we were now "in the deep end of the pool" but Jon's comment that these IV drugs shorten your life left me feeling kicked in the gut. My husband may have to be hospitalized till he gets the call for transplant, the next days will tell.
     Does anybody have any experience with this? Heidi. heidih@mts.net


Rita, October 18, 2002 - Hello all, I just lost my dad to CHF on October 1 of this year. He was only 65 years old and I am so broken-hearted. I am a daddy's girl and we were so close! He would not quit smoking completely and I honestly believe if he would have quit 10 years ago when these problems started, he would be here today.
     Please if anyone smokes, please stop! He did die very peacefully. His heart just stopped and he died within seconds, something I prayed for since I had seen him almost die once before and it was horrible for him and he was in so much pain and couldn't breathe, he was very, very hot and well, it was just horrible. I prayed to Jesus to please let him go peacefully and that prayer was answered. I am still grieving and don't even know why I am here. I guess I thought you all would understand more than most do, Rita :-( annietn34@tds.net


Anne's October 19 reply to Heidi's October 18, 2002 - Hi, I know what you mean by the "kicked in the gut" feeling. My husband recently spent 2 weeks at Club Med on milrinone and Natrecor. He is not on a transplant list, only because of weight issues. Last time he was hospitalized a little over a year ago he was also on milrinone. I can't answer to the long-term effect, but in our experience it seemed to keep him out of the hospital for over a year.
     Although I knew deep down we were dealing with end-stage, it really hit home to see it in writing in the hospital discharge summary dictation. Since being discharged from the hospital, he has been receiving Natrecor as outpatient therapy twice a week and it seems to be helping. At this stage, small steps are wonderful. I am sorry to get so long-winded. It is just nice to "talk" with others who understand and relate to the life I (we) live daily. Anne. amy412001@yahoo.com


Kelly S' October 19 reply to Heidi's October 18, 2002 - Hi Heidi, My prayers go out to your husband and entire family. I hope they're able to find a donor heart soon. larkel@locl.net


Kelly S' October 19 reply to Rita's October 18, 2002 - Hi Rita, I'm sorry that you lost your father. Yes, it's very hard to watch when someone you love is suffering, especially when it's at their own hand. I'm praying that you'll find peace in knowing that your father's no longer suffering, even though you'll miss him tremendously. larkel@locl.net


Beverly, October 21, 2002 - Hi, I am a hospice heart patient 56 years old and am so very relieved that my husband will have someone to call that will be level-headed and make sure my wishes are obeyed. They have made sure that I will have every pain relieving, anxiety, sleep medication, and oxygen that I need. The regular doctors seldom advise you to get on hospice as early as you should. Hospice provides me with everything I need from oxygen to hospital bed for free. They are now providing me all my medications that have to do with my heart free.
     They provide a nurse to come to the house and check on me every week. She has been a dream. I ask questions like, "What do I do when the pain gets so bad with another heart attack that we all know is coming?" She said to take the meds they give me until the pain goes away. If the pain won't stop, I may keep taking the meds until my breathing stops and then my pain will be gone. My theory is that there are worse things than dying. I believe we are going to a better place and know that. My fear is of a long painful dragged out death, possibily on a ventilator with my hands tied down. My family has agreed to my wishes.
     Hospice can have people come and clean your house, and bathe you too. Both my mother and mother-in-law used hospice care. Hospice told us when their time was near because they do this every day. My mom and mother-in-law's doctors would never answer their questions with straight answers. I went to a local nusing home and ask the nurses the name of a really good hospice group.
     I interviewed two and then you have to make sure they are on your insurance plan. You get your doctors to fill out papers that say you are expected to die within 6 months and want hospice care. If you do not want to scare your loved ones or family members, just tell them that the doc may not be saying you will only last 6 months but that they just renew it when the end of the 6 months comes. Tell them it will save a lot of money and get you some good help at home. You could be surprised how slowly and kindly hospice can prepare your family for your death. Most people do not want to be in a hospital when they die and with hospice you stay at home no matter what comes up. The mortuary can come get the body and take it directly to the funeral home rather than the morgue.
     After we got everything set up and they provided me with better pain meds, I felt so relieved. Doctors are all afraid to prescribe good pain meds because it looks bad on their record; like, wouldn't it be a shame if a dying man got "hooked" on narcotics?! Hopefully, hopice is there to provide a painless death for the patient. Anyone is welcome to e-mail me if you have any questions about my hospice experience. This is my third experience with them. macmember@earthlink.net


Heidi's October 21 reply to Kelly S' October 19, 2002 - Hi, Thank you for your responses. He is now at half the maximium dosage but is starting to "wilt" and look as he did pre-hospital admission. So time will tell whether he will be able to come home, Heidi. heidih@mts.net


Roseanne S' October 21 reply to Heidi's October 19, 2002 - Hi, When my husband had to have a dobutamine drip, we were told it would require a 24-hour hospital stay followed by monthly outpatient visits. Twenty-four hours turned into 15 weeks and 3 hospitals. We started on the dobutamine drip and when they tried to stop it or even lower the dosage, things went bad, very bad. They had to add milrinone and dopamine to the mix before he received his LVAD. After he received the LVAD they were able to get him off the milrinone and dopamine but we went home on the dobutamine. He was on the milrinone and dopamine for 8 weeks and the dobutamine 23 weeks. The dobutamine kept him alive until heart transplant. Hang in there - your time will come, Roseanne. rschurick@hillcrest-gcc.com


Lisa Z's October 21 reply to Rita's October 18, 2002 - Hello Rita, I am so very sorry about the loss of your dad. I am also a daddy's girl and so close to my dad. I live in constant fear of the day that I will lose him since I have watched him come desperately close to death too. I cannot imagine how you must feel, but please know that you are in my thoughts and prayers. My daddy is 72 and has had DCM, CHF, and a myriad of other things for several years. He also suffered a small stroke last month. Each day is truly a gift. I wish you peace and strength at this very traumatic and difficult time. Take care of yourself. zeigler@zbzoom.net


Carole K, October 23, 2002 - Hello All, Jon, thanks for your explanation of my mother's echo. Beverly, thanks for sharing your experience with hospice. I am in the beinginning stages with hospice care with my mother. I used to work with my mother's hospice nurse for several years so she is familar with me as well.
     I do have a question for the group. I have noticed that for the last week when I visited with my mother (every afternoon after work around 5:30 PM) she has been sleeping and seems so weak and unable to wake up to carry on a coversation with me. Should I try harder to have the consersation or just let her sleep?
     I have been just sitting by her bed holding her hand as she sleeps and not trying to talk to her. I really want to be there more but I work a full-time job and the nursing home is too far away from my work to go during lunch. I guess guilt is playing on my emotions and I want so desperately to have her the way she was. Also, I want to bring her home for the holidays but I am very nervous about it. Carole K. ckennedy@appliedtm.com


Jennifer, October 23, 2002 - Hi, My mother has CHF and she has to have a total knee replacement in a few months. She is worried about the risk of having CHF along with the knee surgery. I understand that she may have to have an spinal instead of general anesthesia.
     Is there anyone out there who has CHF who has had a knee replacement surgery? She is greatly despressed by the fact that she has to have the knee replaced but also by the fact that she thinks she is the only person with CHF who has to have it done. I'd appreciate any information or encouragement that I could get for her. Peace, Jennifer. jkemp@birddogcreative.com


Annie G's October 24 reply to Carole K's October 23, 2002 - Hi Carole, What time does your mom wake up each day? Is she awake each morning at 4:00 or 5:00 AM? It's not easy, but maybe before work might work out better. My husband has turned into an ultra-early waker since his DCM. He's up most mornings by 4:00 AM and important conversations are just not on the agenda in the evenings if we can help it, but boy is he raring to talk when I get up in the morning cause he's already been up for a few hours by then! Just a thought, Annie G. annieg129@cogeco.ca


Carole K's October 25 reply to Annie G's October 24, 2002 - Hi, Thanks Annie, I will contact the nursing home today and see what they say about her early morning schedule. Odds are the difference whether I go in the morning or afternoon, I just want quality time with her. Thanks, Carol. ckennedy@appliedtm.com


Carole K, October 25, 2002 - Hi everyone! It looks like the good days are gone. The hospice nurse told me today that mother's condition has changed from good to a slow decline. She has revised her last statement that she thought that mother would live past the 6 months to starting her decline. She said that by no means is she actively dying but she has seen a marked increase in weakness, loss of appetite, and weight.
     I have decided no matter what, I plan to bring her home to my house for the Thanksgiving holiday, and if she passes away there, so be it. She will be with her family. Pray for us and love to you all, Carole K. ckennedy@appliedtm.com


Kelly S' October 26 reply to Carole K's October 25, 2002 - Hi, I'm sorry to hear that you've received this news, but am hoping that your mom and your family are able to share a wonderful Thanksgiving together. I am sending prayers your way. larkel@locl.net


Carole K's October 29 reply to Kelly S' October 26, 2002 - Hi, Thank you Kelly for your warm wishes and your prayers. ckennedy@appliedtm.com


Carole K's October 29 reply to Carole K's October 25, 2002 - Hi, Hugs and prayers to you. Your family is in my prayers. debkay@xtratyme.com


Lois B, October 29, 2002 - Hi Jon or anyone with up to date information, Do you have any information or results of experimental laser surgery being done at Cleveland Clinic for end-stage heart patients? Thanks, Lois. lsom1017@aol.com


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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