The paperwork never ends The Archives
Loved Ones - July, 2003 Archive Index

Karen S' 7-2 reply Jim's 6-16     ICD experience
Jane 7-2     seek end-stage experiences
Lee Ann 7-4     update - hang in there
Diana's 7-4 reply to Jane's 7-2     what to expect at end stage illness
Judy 7-8     need someone to talk to
Michelle 7-8     seek transplant info
Aida 7-8     please help!
Cora's 7-9 reply to Diane's 6-14     seek end-stage experiences
Susan B's 7-9 reply to Aida's 7-8     I hope this helps
Aida's 7-10 reply to Susan B's 7-9     thank you so much for replying
Cora 7-10     bleeding through bladder catheter - questions
Susan B's 7-11 reply to Aida's 7-10     glad it helped and more
Thomas O'Brien 7-12     what can we do?
Kristy N 7-13     what about this vomiting?
Jon's 7-13 reply to Kristy N's 7-13     possibilities
Donna H's 7-13 reply to Aida's 7-8     coping with a husband who has heart failure
Natalia's 7-13 reply to Thomas O'Brien's 7-12     see another doctor
Monica's 7-13 reply to Thomas O'Brien's 7-12     see another doctor
Rosemarie 7-15     battling CHF cough - and a question
Annie G 7-21     how do you cope with planning for the future?
Monica's 7-21 reply to Annie G's 7-21     it's tough - hang in there
Cora 7-22     my grandma is failing
Jon's 7-22 reply to Cora's 7-22     measures taken in end-stage CHF
Jon's 7-22 reply to Cora's 7-22     measures taken in end-stage CHF
Mike W's 7-23 reply to Annie G's 7-21     planning for the future
Jon's 7-23 reply to Mike W's 7-23     planning for the future
Mike W's 7-23 reply to Jon's 7-23     second take
Annie G's 7-23 reply to Mike W's 7-23     that's it, how do I put it, though?
Diana 7-24     my husband died
Anita S' 7-24 reply to Diana's 7-24     condolences
Donna H's 7-25 reply to Diana's 7-24     condolences
Donna H's 7-25 reply to Annie G's 7-21     similar thoughts & feelings
Monica's 7-25 reply to Diana's 7-24     condolences
Greta 7-25     coping with heart failure
Rosemarie 7-27     what might cause this gas? & more
Rain 7-27     how is heart failure treated? & more
Gail B 7-29     severe memory trouble - seek input
Sheryl C's 7-29 reply to Rain's 7-27     coping with heart failure
Katherine H's 7-29 reply to Gail's 7-29     dementia-like experience
Susan B's 7-29 reply to Gail's 7-29     dementia-like possibilities
Gail B 7-30     thank you for replies
Carrie 7-30     I am not ready for this
Glenda 7-31     seek tips on coping with caregiving
Jan's 7-31 reply to Glenda's 7-31     coping with caregiving

Karen S' July 2 reply to Jim's June 16, 2003 - Hi, My husband is 56 years old and had an ICD implanted 4/7/03. The procedure and recovery went remarkably well. He had abnormal heart beats so often and so forcefully that he had gotten scared, and it takes a lot for him to get scared. The ICD has helped with his abnormal heart beats and has given him peace of mind.
     He has not yet been shocked and does not worry about that. We are grateful that a doctor finally listened enough to do an EP study and determine that he was at extremely high risk for sudden cardiac death. They implanted the ICD immediately. I would recommend this to anyone it is offered to.
     Jim, things do change a lot but I find that once you understand what's going on and get used to it, it's not as bad as it seemed initially. I hope that your dad gets the ICD and gets along as well as my husband did. Karen S.

Jane, July 2, 2003 - Hi, After reading the above posts, I find my questions closest to those posted by Diana and Kristy. My mother is class 4, stage D CHF and her kidneys are failing her. She is 80 years old and in hospice care. Diana, I love this hospice arrangement, by the way.
     As Kristy asked, my question centers around what I can expect with my mother's condition in the last few weeks (and days) of her life. Lately I'm noticing her being very confused in the afternoon and evening, but still pretty "with it" in the morning hours. By confused, I mean that she will make some comment that is completely bizarre and unrelated to anything at the moment. I know that confusion is a symptom of end-stage kidney disease, but I'm wondering if this is just the beginning of the end - or will this confusion progress to a chronic state of affairs for some time?
     Her latest bloodwork indicated a BUN of 101, so we know her kidneys are not doing well, although she is still putting out urine. Can anyone tell me what I can expect in the very last weeks of CHF and kidney disease?

Lee Ann, July 4, 2003 - Hi, I am posting this in hopes of encouraging those who are caregivers or have a loved one with CHF. My father went in for a simple lung biopsy last summer (August of 2002) to determine the type of lung cancer that he had. His esophagus was "nicked" when they did a biopsy, which led to double acute pneumonia. He was in intensive care for almost 6 weeks.
     In that time, he was on a ventilator, had a stroke, developed diabetes, caught c. difficile (which recurs), had a mediastinitis infection, had to have chest tubes put in, got a blood infection, had to have a PEG tube put in, and went into heart failure. Except for the cancer, none of those other conditions existed before the hospital trip, including the CHF. He did have beginning emphysema, though. For him and my family, this was all an extreme shock.
     We have learned many things over the past year, including:

Be proactive, research and question
Doctors and nurses are not gods. Don't take what they say as absolute truth, especially research medications and treatments. Ask your pharmacist questions. We had to be vigilant because the nurses would try to give him meds he was allergic to. Even though it was written big and bold on his chart and on sheets I took to hanging around his room. If you have a problem with a nurse or doctor, say something!
Don't live every day as if your loved one is going to die.
We all die one day - some sooner than others. Dad's still living, still here and enjoying everything. Dad's hospital bed is in the living room so he can still be in the middle of everything. Bird feeders are outside the windows so he can watch the birds and squirrels, which he loved to watch before. We watch TV, play games, talk, etc. I have gotten great insight into what he must have been like as a child and let me tell you, he must have been quite a handful!
There are good days and bad days - for both you and your loved one.
I get so mad when I think of everything that has happened to him and how much it has impacted us all, most especially Dad. He has good days and bad days. Some days he sleeps a lot, other days he doesn't. Some days he pays attention and other days he doesn't. Mostly he is pretty steady, though.
Be there for each other.
During Dad's illness, he was never left alone at the hospital even at night. Family means everything to him and it is family getting him through all this. His doctor told Mom that he had never seen anything like it. We were able to rotate at night while Mom stayed with him during the day. Fortunately, we are a large family, so the first month we were all here and could rotate staying with him.
Don't ever, ever give up
We switched cardiologists because Dad's previous one told me that when his BP dropped below 60 to call him, then to call when it dropped below 50, then he told me to call him when it dropped below 40. So I was like, well, you just want me to call you when his heart stops? We switched cardiologists. His old cardiologist had already given up on him. When he was in the hospital in March, he almost died due to a blood infection, sodium problem, and extremely low blood pressure. The hospital ER room staff were wonderful. There were 4 or 5 people in there working with Dad to get his blood pressure stabilized. They never gave up on him and he is still here. Dad's new cardiologist switched his meds around and Dad is doing well. He was on about 7 or 8 heart pills and the cardiologist could not understand that.
Don't ever discount God.
When Dad was in the hospital fighting for his life, he always had the right doctor or right nurse at exactly the right time to treat whatever was happening. So every night, I ask God to keep those angels of his watching over Dad, and He does.

Dad is doing okay now. He was in the hospital for a total of 6 or 7 months, but he is home now. We have had hospice for about 3-1/2 months, since the doctor thought we needed them. His hospice nurse is tickled pink at how well he is doing. I know the doctors thought he wouldn't be here with us right now, but Dad wants to be here and we want him to be here. As long as he wants to continue the fight, we will help him.
     Dad has defied all odds and we keep hoping and praying that he will continue to do so. He is going to die one day and I am going to miss him terribly, but I refuse to live as if he is going to die. Enjoy your loved ones while they are here and tell them how much you love them. Lee Ann.

Diana's July 4 reply to Jane's July 2, 2003 - Hi Jane, I'm so sorry your mother is not doing well. It's hard to watch the ones we love have to suffer with this disease.
     I have never really gotten any definite answers as to what to expect in this end stage. My husband's doctor had me so scared last June that I thought my husband would be gone in 6 months, and then again in January when he recommended hospice, I again knew the end was near. However, my husband is doing okay - not good, but not terribly bad either.
     He was in the hospital from last Wednesday to Saturday and got about 8 lbs of fluid off, but has gained most of it back since then, even on 40mg of Demadex daily. We watch his sodium pretty well too, so I wonder why this happens.
     Our doctor went out of town and his partner took care of Kelly while he was there, and both he and the heart doctor said this hospitalization (he went in for pains in his lower chest) was not heart-related but was lung-related, and they said his heart looked good. The lung doctor says his lungs look fine too, so what is causing all these problems? I've found it's a never-ending circle with one thing affecting the other.
     Anyway, I don't know if there are any definite expectations for how this disease progresses. It seems everyone is affected differently. The best thing we've learned to do is take one day at a time and enjoy each day that God gives us. If it's a good day, so much the better!
     Hang in there. This forum has a lot of wonderful people who are willing to answer your questions, but remember, only God knows the course of our lives and what will come. I wish the best for your mother and you! Diana.

Judy, July 8, 2003 - Hello, My name is Judy. My husband has cardiomyopathy, CHF, coronary artery disease and polycystic kidney disease. He has been on the list for a heart/kidney transplant for almost 3 years now. I would really like some people to talk to. It is getting very difficult, especially since he is beginning to go into kidney failure. I thought for sure he would have gotten his heart/kidney by now. Judy.

Michelle, July 8, 2003 - Hi, My mother has had CHF for about 7 years now, and we have been through a lot. The last thing, however, is her having kidney failure and possibly having to be put on dialysis. I know that kidney failure often has no cure other than transplant but from my understanding they won't let you transplant one organ when another is failing. To fix the kidneys would take a transplant, but she is unable to have that because of the pitiful condition of her heart.
     My question is: If she cannot get on a list for a kidney transplant, can she get the transplant if we have all our family members tested to see if there is a match and we can give one to be transplanted into her? What is the procedure to see about that? Is it plausible? Can it be done? Where do you find the best matches within a family? Thanks.

Aida, July 8, 2003 - Hi Everyone, I don't post often but I read your posts every chance I get. I have tried to get my husband to post but he flat out refuses. Today he is worse than ever! He has dilated cardiomyopathy and currently what I think are active CHF systems. He can't sleep at all, has shortness of breath and a nagging little dry cough. He is also totally without energy.
     He also recently had a Medtronic Resynchronization gadget replace his Guidant 2-lead ICD. We have not received the operation room report to-date and this took place around the middle of April. It appears they switched the actual box he has implanted (a Guidant) for a Medtronic and made the third lead a Medtronic lead. So now he has two Guidant leads and the third lead is a Medtronic lead going with the Medtronic box.
     This procedure was supposed to make him better. He has had a 10% EF for almost 5 years now and is 51 years old. He takes so many medications, let me try to name them: Atenolol, Monopril, furosemide, Zaroxolyn (when he needs it), digoxin, Mag64, Aldactone (spironolactone), Valium (when he needs them), and the latest is amiodarone (Cordarone), which I hate; he does too and we both want him off it. They put him on amiodarone because his heart starting going into serious arrhythmia when he had the Guidant ICD. He was hospitalized, given intravenous amiodarone, and then the pill form.
     They tried to do a cath to get the third Guidant lead in his heart but could not because they said his veins were too narrow and kept collapsing. So they did a VATS procedure to get that Medtronic box in there as I mentioned above. Since then, he has deteriorated tremendously. Where before he may have been class 2 most days although his doctor classified him a Class 4, he is now definitely class 4. He can barely do anything!
     It is really hard to find a CHF specialist in Tucson, Arizona and it appears to me his cardiologists are just shuffling him back and forth with no one telling us what we can to do stop this deterioration. Can anyone out there help with more information? On top of all this, he has now fallen into a tremendous depression and wants to die. Our situation here at home is awful. We are all stressed out and constantly fighting with each other. My husband is supremely irritable, mean, and super sensitive, which causes a lot of bad feelings for him now and just makes his recovery seem more impossible. Help, please!

Cora's July 9 reply to Diane's June 6, 2003 - Hi Diane, I found this web site yesterday and am very grateful for it. My grandmother has had CHF now for about 10 years. She has had to make many trips to the hospital in these years to pull off excess fluids, which gather in her legs the worst.
     In June, her legs swelled up so badly the doctor had her rushed over to the ER. She ended up in the CCU unit with IV Lasix to pull off the fluid, and dopamine to raise her blood pressure, which had dropped dangerously low; she had just been in the hospital 10 days earlier with CHF. Anyway, her legs were huge and it seemed impossible for the fluid to come off. That Friday her doctor approached me and said she was at the end of the road, and that nothing was helping her anymore. He suggested we just keep her comfortable and let nature take its course.
     This was very shocking and hard news to take. Her heart failure is on the right side of her heart, which the doctor said cannot be treated as it would if it were on the left side of the heart. So my Grandma, mother and I talked, and decided to go with comfort measures. Her legs were so huge that she had sausages for toes. The doctor said the swelling would not come off.
     Well, the next morning I went to the hospital to see her and she had done a complete turnaround - her feet were feet again! She felt really good for the remainder of the weekend, and Monday was sent back to the nursing home. Now she is on a downhill slide again, with swelling slowly coming back. She is getting very tired and wants to sleep all the time. She doesn't want to go back to the hospital anymore, doesn't want IV drugs anymore.
     This is hard for me. She raised me and has been there for me all my life, and I have been taking care of her for years and had to make the decision to place her in a nursing home after a major CHF attack because I couldn't provide the 24-7 care that she needed. I would appreciate any information from anyone about what to expect next, or about their experiences.
     This is heartbreaking for me. It is hard for me to go to the nursing home and see her gasping for air most of the time, her body slowly swelling up again, with discoloration of her lower legs. It is so much to bear alone. I did read one person's post who said that we need to look to the fact that our loved one is still alive, not that she is dying. Those are some positive words that I will keep in mind and I am grateful for my moments with her that have been given. Thank you.

Susan B's July 9 reply to Aida's July 8, 2003 - Dear Aida, I am sorry that things are going so badly for your husband and you and your family. I hope that this helps. You must get a CHF specialist! Your husband's life and quality of life depends on it. Do not pass go! Do not collect $200! Get another doctor - a CHF doctor - a doctor that explains things and works with you. Then fire the doctors that are not working with you.
     For my husband's CHF doc, we drive past several hosptials and to another state to his doctor, which is about one hour from our home. The doctor's office is in what I consider to be a bad part of town and we have to pay for parking! We live out in the suburbs and it is still worth the extra effort to get the right doctor for my husband.
     My husband was 44 when he got sick; he is 47 now and doing much better. He was a fire fighter and it was (and still is) very hard for him to stop wanting to go back to fighting fires. I think that if you feel bad all the time and you can't do want you want to do, then you get depressed. However, your husband's doctor should talk to you all about the options to treat your husband's depression.
     The doctors work for your husband, as Jon keeps saying around here. So if they don't take the time to tell you what is going on, you have to fire them! They work for you. Get some fire in your belly and go to work for the best treatment your husband can get. Read everything you can so that you can talk the talk to the doctors.
     My husband and I have a rule that we overlook petty things with each other and say what we think and don't fight over things that are not worth fighting over. Maybe that will help you. No one can be nice all the time and when you are afraid or ill, you just might say what is really on your mind and it might not come out too nicely. I know that is true in our house and at my office. Good luck, you are in our prayers. Susan B.

Aida's July 10 reply to Susan B's July 9, 2003 - Hi Susan, Thank you for responding. I appreciate your suggestions and understanding more than I can say. I am in the process of trying to get a referral for him to a CHF clinic that I heard about in Phoenix, Arizona. Just hearing someone say something, anything, to acknowledge that they understand - and any advice that can be offered is priceless. Your prayers are needed and appreciated. Thanks again.

Cora, July 10, 2003 - Hi, My grandmother has chronic CHF and is in the end stage of the disease. They are doing everything possible to keep her comfortable because she doesn't want to go to the hospital anymore, or have any of the IV drugs associated with this health problem.
     Lately, she has been having blood in her catheter tube, and in the bag. Earlier this week, she had severe pain with the catheter, so it was redone. She had some mild bleeding and deposits in her tubing after that. Then everything was perfectly clear in the middle of the week. Yesterday, when I went to visit her in the nursing home, her bag was almost completely red with blood, and there had been some blood clots passed, according to what the nurse said.
     I am very concerned because no one really knows why this is happening. The nurses say it could be irritation from the catheter, or it could be medications she is taking by mouth that are causing it, or one nurse said it could be the start of kidney failure. Has anyone experienced this and how was it handled?

Susan B's July 11 reply to Aida's July 10, 2003 - Dear Aida, I am glad that what I said is a little helpful to you. This is a wonderful safe place to discuss being a caregiver and CHF. Sometimes I just need to know that I am not alone. People who don't know about CHF don't get it. They think that my husband is just fine - and that is the way he likes it.
     Good luck finding the right doctor! This is the time to get a doctor who will work with you. Vague answers don't work. I like a doctor who will say that they don't know everything. I believe that that is a sign that they know a great deal. I hope you find the right doctor for your husband and you. Prayers are freely given. Please take care of yourself too. Susan B.

Thomas O'Brien, July 12, 2003 - Hi, My younger brother and I are taking care of our 83 year old mother with CHF. From June 1 to 22, we were dealing with edema. We have her in a local nursing home and so far she has fallen 2 to 3 times. She hasn't eaten anything since Thursday of last week. She keeps asking for water only. Our family doctor has refused to have her see a cardiology specialist here in Casper. Help!

Kristy N, July 13, 2003 - Hi everyone, I just wanted to say that this site has been very helpful to me and my family. My grandmother is doing about the same as she was when I last posted. Her hospice nurses told us last weak that she was going into kidney failure. She is unable to keep any of her food or medications down and as a result she is becoming dehydrated. The nurses and her doctor are unsure why she is vomiting so much. She is currently on an IV to replenish some of her fluids, but they can't give her much because of her CHF. I was just wondering if anyone else had a loved one that had this problem. Thanks, Kristy N.

Jon's July 13 reply to Kristy N's July 13, 2003 - Hi Kristy, ACE inhibitors can often cause a form of angioedema or internal fluid retention that shows up only as stomach/intestinal distress, often with vomiting. It's described in the literature but I have found that very few doctors are aware of it. Ask about taking her off her ACE inhibitor if she takes one to see if this improves. Digoxin can also cause vomiting in some people although more rarely. Jon.

Donna H's July 13 reply to Aida's July 8, 2003 - Hello, I am another wife who understands some of what you are going through. My husband was diagnosed about 3 years ago at the age of 49. Since then he has been in and out of the hospital a couple of times a year, plus regular doctor visits. He sees a cardiologist, a CHF specialist, a nurse practioner, a PCP, and an acupuncturist. He makes it very clear to all of them that he will do what he wants to do, but will listen to what each of them has to say.
     The first year, the PCP sent us to the cardilogist, who diagnosed not only CHF but also sleep apnea. We were looking for a CHF doctor the second year but the doctor that was recommended to us told us that his heart was worn out and that nothing could be done. For a long time after that my husband refused to go to any doctor. When he started passing out last summer, I took him to the emergency room and we found that his heart was stopping. They kept him for 2 weeks and put in a Guidant pacemaker.
     Since then he has felt better but still not 100%. We looked around until we found a CHF specialist. This new doctor wants to put him on Cordarone because of ongoing a-fib but my husband has read enough about it that he is very leary. So for now he is staying on a mixture of about 14 different meds. I also buy CoQ10 for him and he goes to the acupuncturist twice a week. He feels that it helps the rythym of his heart but the CHF doctor says it doesn't. It does seem to make him feel better and be in a better mood. Since he refuses to take any depression meds, I am glad for the acupuncture.
     Since he feels bad, he is often irritable. I try to overlook it but I am human too, so I know what you mean about the problems it can cause. Recently the doctors called to tell him that he is diabetic but he refuses to believe it so he will not pick up the machine or have his blood tested. He is feeling tired and generally bad, and is having some vision problems. It could be diabetes or more CHF problems. It is a strain on the entire family because it is difficult to help someone that is in denial.
     I don't feel that my post is saying anything to help, but I want you to know you are not alone! Since my husband will never be able to go back to work as a cop, he has had to give up not just his health but his whole way of life. As time goes on we realize that in some ways that we are very lucky because we are given the chance to slow down and appreciate what we have. It isn't what we would have chosen, but it has been a blessing in some ways. We appreciate our time together more and realize that we are lucky to have made it this far past his original diagnosis. It has shown me that I can be assertive when needed. It has made me look for new ways for us to spend our time together. We were avid primitive campers but this year we invested in a membership at an indoor pool. Giving up many dreams is hard but sometimes new ones can take their place.
     Right now, I am sure that you are busy dealing with his poor health. This disease seems to cycle and my husband will feel well for weeks or months only to end up in the hospital again. Luckily he has only been in the hospital 2 days in the last 6 months and that was to have a new sleep study so his CPAP could be reset. Everything from exercise to diet to meds makes a difference when it comes to heart disease and we can only control so much and we have to hand it over to God.
     Take care of yourself and get adequate rest and exercise so you will be more able to help him. You will be in our prayers.

Natalia's July 13 reply to Thomas O'Brien's July 12, 2003 - Hi Thomas, I an sorry to hear about your situation. I nearly choked on my food when I read "refuses" in your post. The doctor is refusing your request because ... ?
     Your grandma has a right to see whomever she wants. He may mean that he does not want to write a referral but either way, I think you guys need to do what you think is right, period. What do the medical personnel at the nursing home say? How did they handle the edema, anyway? That is an issue for a cardiologist to handle.
     Don't always pay too much attention to doctors and their opinions, I say. It is a life and death situation, not a matter of opinion. I apologise for being blunt, but your family doctor is not someone I would ever want my grandma to see. Sincerely, Natalia L.

Monica's July 13 reply to Thomas O'Brien's July 12, 2003 - Hi Thomas, I would get another doctor - one that will listen to you and your mother's needs. They are employed by you and if they don't want your business, take it elsewhere, but get her checked and don't take no from anyone when it comes to your health or that of a loved one. Good luck and prayers, Monica.

Rosemarie, July 15, 2003 - Hi, My husband Frank has struggled with a cough for a long time, and we seem to have found by chance something that suppresses it quite considerably. He recently had a tooth extracted and has been battling with the pain, so he has been taking Panado, which is paracetemol. We noticed that his cough has not been as evident.
     Has anyone else experienced extreme sensitivity of the fingertips? I have posted about his struggle with his feet already but now he finds that his hands and fingers worry him too. Can anyone throw any light on why that should be or is it just natural progression of cardiomyopathy?

Annie G, July 21, 2003 - Hi everyone, My husband has had CHF for almost 5 years now and although his EF was initially 13 and it is now about 35%. His diet is slipping a bit, he still takes no alcohol, but he smokes about 1/2 pack of cigarettes a day. Here's my gripe and maybe I'm out of line:
     My hubby is very concerned about his retirement (he's about to turn 51) and about how little he has in it. With other expenses, in order for him to put into retirement what he feels he needs to put in, I will have to take on another part-time job. We are putting our oldest child through university right now and have a 15 year old coming up and a 17 year old in a group home.
     I fluctuate between yelling at him, "You idiot, do you really think that heart is going to last you another 14 years, and for the record, no transplant heart will go to a smoker!" and just shutting up, taking on more work and giving us less time together while I juggle the majority of everything else around this house. He is currently working full-time but I really can't see him managing that for another 5 to 10 years in his field.
     So far I'm saying nothing, just looking for another job. Am I wrong not to expect a joint retirement? I'm only 45, I have plenty of time to work more hours after he's gone. I guess I'm just tired of having no idea how to plan my future, how to make decisions when the future is so murky. Do other people make plans as if their spouses don't have CHF, retirement needs, and what not? I'm just confused right now. Thanks for the space to whine. Anne.

Monica's July 21 reply to Annie G's July 21, 2003 - Hi Annie, Hugs! I'm not sure what to tell you other than to just enjoy what time you are given with your hubby. I have heart disease and the weight has been put over onto my husband. I worry about the future because I have an 18 year old, a 15 year old, and a 13 year old; and I want to be here for their future. We have done best we can to prepare for their future but not so much for our future.
     I hate living with this disease but we do. We take it and go. Have faith! I am no longer able to work and I get SSD, which is not even close to what I used to earn but we make do. It sounds like you need "you and him" time, which believe me you do need and need to do.
     I know that it is hard to live with someone that has this disease, but please for one second think how it feels to be living with it in your body. Have faith and God bless. Venting can be a good thing. Best wishes, Monica.

Cora, July 22, 2003 - Hi, My grandma was having some really good days, and was even saying that every day she will get stronger. I was so hopeful that she would recover from this. Even the nurse told me that she didn't have any edema and that she wasn't actively in CHF. Her heart failure this last time was on the right side of her heart, and the doctor said there wasn't anything further they could do, so we pulled her off all the heroic meds. Now she isn't eating very well, and is having a hard time chewing and swalling certain things.
     This weekend when I went to visit her, I was down because she was so cranky. She said she hadn't eaten so I jumped all over the nursing staff about forgetting her, and they brought her some soup. When she got her soup, she started yelling that she had already eaten and didn't want it. Anyway, yesterday I went to see her and she was going through "air hunger" as the nurse put it. She had pulled off her oxygen mask and was in her room yelling for help when I walked in. I got a nurse immediately, and they got her oxygen going again, cleaned her up, and gave her a breathing treatment.
     After that, I was sitting next to her and at times she would still gasp for air, and I would ask her if she was okay. Then she pointed her finger in my face and said sternly not to be nagging her. I told her that I was concerned about her and she did the same thing again. I told her, "Fine, I will just back off and leave." My grandma told me that would be a good idea. It hurt me so badly that I walked out of the nursing home in tears. I couldn't believe she was acting like that toward me. We have been so close all my life.
     I called the DON at the nursing home and told her what I had experienced over the weekend. She told me that my grandmother is going through part of her death process, which means she is internalizing now. The nurse told me that she doesn't really know if I am there or not, and suggested that I take a few days off to get some much needed rest and take care of things at home, and my daughter.
     The nurse told me that my grandma is the only one who can go through this process, and I need to be strong because if I can't handle this stage, then I won't be able to handle what comes next. I appreciate being able to vent. I wasn't sure what was happening and I now have a better idea, but it doesn't make it any easier. I love her dearly and hate to see her suffer. Is anyone else, or has anyone else experienced this? Thank you, Cora.

Jon's July 22 reply to Cora's July 22, 2003 - Hi Cora, Vent any time. I only want to mention something that is easy to overlook. "Heroic meds" are not the same as " heroic measures" - especially in heart failure patients. IV drugs like inotropes may save a CHFer's life in the short-term, but they actually improve quality of life and may actually shorten life span. IV or patch nitrates may relieve chest pain and morphine eases breathing through its action as a venodilator, but these are not likely to extend life span - just make the CHFer feel better.
     I just want to point out that unlike heroic "measures" like using shock paddles to resuscitate someone with cardiac arrest or using a feeding tube for someone in a coma, potent CHF meds may actually make a person feel a lot better in end-stage heart failure. I often think the media has confused this issue to the point that people turn down the very comfort they want because it hasn't been properly explained to them. Jon.

Mike W's July 23 reply to Annie G's July 21, 2003 - Hi Annie, I found your posting somewhat unsettling. I apologize beforehand if what I'm about to say offends you. One of the reasons people "plan" for the future is it gives them the illusion that by planning they somehow ensure their future. This, upon examination falls apart.
     I find your presumption that because your husband has CHF you can be certain that you'll be around after he's gone, a bit strange. It's pretending you know both his and your future. Your husband got CHF. Do you actually believe that you're guaranteed 80+ years? The unavoidable reality is that all of our futures are murky.
     Maybe, unlike those of us with CHF, you haven't had that little (and traumatic) mortality tap to the forehead. ;-) I don't really know how to express my reaction to your post (and I'm not trying to invoke guilt) but why I'm replying is really to say that perhaps a little less planning and a little more living in the here and now might be in order. Peace, Mike Wafkowski.

Jon's July 23 reply to Mike W's July 23, 2003 - Hi Mike, I understand your point, which I thought you expressed quite well in your last sentence. Still, I have had that tap to my (very hard) forehead and I routinely plan for the future.
     I sort of got the impression from Annie's post (she will hopefully correct me if I'm wrong) that she is wishing her husband would either get real about planning for a future by making himself a proper transplant candidate or that he would indeed live a bit more in the here and now - now.
     Text-only communication sure is hard, isn't it? ;-) Jon.

Mike W's July 23 reply to Jon's July 23, 2003 - Hi Jon, In rereading Annie's post it seems like I did take it incorrectly. Your take seems more on target now that I've gone over it again. Annie, I am sorry if I was sounding judgemental. Text communication is definitely hard in expressing any nuances. Peace, Mike Wafkowski.

Annie G's July 23 reply to Mike W's July 23, 2003 - Dear Mike and Jon, Thanks for replying. Mike, I don't take offence but Jon was the one who caught my gist, absolutely dead on. You've expressed how I feel; thanks, Jon.
     Now how do I say it nicely like that to my husband? <g>

Diana, July 24, 2003 - Hi all, I just wanted to let you know that my husband Kelly passed away July 18. He died peacefully in his sleep, but had a very hard time the 2 days before. We finally made the decision the weekend before to have hospice come in. They enrolled him on Tuesday afternoon and 12 hours later I was calling because he was in such pain and unable to breathe well.
     The hospice nurse we had was so caring and so very helpful. I was not able to wake him up Thursday morning and called her again, but they couldn't awaken him either so they said to let him sleep and maybe he would wake up later. We got a hospital bed for him since he had been staying all the time in his recliner.
     He finally woke up Thursday afternoon and was able to tell us everything he wanted us to know and talk to all our daughters; only one was not here yet. He even was able to joke around a little with the hospice nurse and our pastor. After they helped him to the hospital bed, he was so very uncomfortable and hurting in his chest. When we finally got that pain relieved, he went to sleep and then just did not wake up. He passed away about 3:00 AM Friday morning. We miss him terribly but know that God has Kelly in His care now and he is no longer suffering or in any pain.
     Thank you all for the help and advice you've given over the past year or so as we've struggled with this disease, and thank you Jon, for this forum. Even though I didn't post a lot, I took comfort in knowing that others understood what we were going through. God bless each of you and your loved ones! Diana.

Anita S' July 24 reply to Diana's July 24, 2003 - Dear Diana, I am so sorry to hear of the death of your husband Kelly. You and your family will be in my thoughts and prayers. Take care.

Donna H's July 25 reply to Diana's July 24, 2003 - Hi Diana, I am very sorry to hear of the death of your husband Kelly. Thank you so very much for posting about his last day. It was comforting to know that his death was peaceful. My thoughts and prayers are with you and your daughters. Donna H.

Donna H's July 25 reply to Annie G's July 21, 2003 - Hi, I read your post with interest because I have struggled with many of the same thoughts and feelings. My husband was diagnosed at age 49 and has not been able to work a single day since then. He signed up for rehab but every time he was supposed to meet with his worker, he was either too ill or in the hospital. His daily tasks take all he has and I doubt if he will ever be able to work again.
     Like you, I want to have some quality time together. Therefore, I have decided to work less myself so that we can actually have time to do things together. It may seem foolish to some, but all the money in the world stored in a bank account isn't worth a thing if we didn't have time to spend together. Last winter we were in the cardiologist's office, awaiting a consultation about a heart transplant and I overheard two couples in their late 70s talking about the latest cruises they had taken. At first I became teary-eyed but then I realized that in our 40s we had begun to appreciate just how precious every day together is. Some people never get that lesson until it is too late.
     As for kids and college, I have one starting in the fall but she realizes that she will be investing in her own future and will be getting by on scholarships and loans. Our plans have had to change because we went from two incomes to one income 3 years ago. At age 18, our daughter is able to understand this and has been a great deal of help.
     Some of the ways we have cut back have actually improved our health. Less eating out means being able to control our diet better. No movie channels means that we might go for a walk or play outside with the dog. You seem to aleady have enough going on without a part-time job. Raising kids and working full-time is already 2 jobs; then when you add household chores and doctor visits, you must be completely stressed! I will keep you and your husband in my prayers.

Monica's July 25 reply to Diana's July 24, 2003 - Hi Diana, Prayers for you and your family. My heart aches for you and your children. God bless, Monica.

Greta, July 25, 2003 - Hi all you caregivers, In reading your posts I felt moved to share with you. I am 56 years old and was diagnosed with CHF in March of this year. My husband has been an angel and a saint through the whole thing. I can give some insight into the irritability some of you are experiencing from your spouse. It is complete and utter frustration!
     Frustration at having your once active life come to a screeching halt and not being able to eat the things you love anymore (Mexican food, pizzas, and anything that has lots of salt on it), and in some cases losing a job. So many personal identities are connected with a career/job. It defines who you are and what you can do. Loss of that affects your self-worth, self-esteem, and self-confidence. In the last few months, I have had to redefine who I am and what I can do in so many areas. It is not easy and sometimes I feel helpless.
     Now I have to battle with feelings that I am not holding up my end of the yoke because I can no longer do a lot of the DRAs (daily required activities). I used to feel I was helping my husband (since he works long hours) by mowing the lawn but I can't do that anymore. He also now not only is the main breadwinner but also has to pick up the slack because I am unable to do those things anymore. Some I can do on a limited basis, but not the way I used to do.
     Combine all these restrictions into one and it spells frustration and anger. It can even cause denial. After all, who would want to - if they had a choice - have this illness visited on them. Denial can be a coping mechanism: Like sweeping it under the carpet, if you can't see it, it must not be there.
     Caregivers hang in there. Be patient, gentle and forgiving. If you are babying your spouse or treating them as invalids, try a different approach because that can just add to their feelings of frustration and helplessness. Assist and aid when it is "needed" and let them do as much as they are physically able to do. Your attitude will make a world of difference, and it may improve theirs.
     My answer is the Lord Jesus Christ, who has sustained me, encouraged me and carried me through all this. If you don't know Him as your Savior, I suggest that you find someone -- a friend, church, pastor -- that can introduce you to the only person who makes life worth living under any circumstances and offers hope for the future. If it were not for Him and my Christian husband, I would be in much worse shape physically and mentally. In His name, Greta.

Rosemarie, July 27, 2003 - Hi there, Thank you again for this amazing site. I find it so helpful to read of others' experiences and would like to ask another question if anyone out there is able to perhaps help.
     My husband Frank was feeling terrible this past week and I took him to the doctor, who was worried about his complaint of pains down the center of his chest and sent his EKG and blood test results to the cardiologist who says that the EKG is okay in the light of his atrial fibrillation and that he has been suffering from low blood pressure for some time now.
     They decided he had not had angina but did note that his liver is becoming compromised by the cardiomyopathy. He is still suffering from what now seems to be heart burn and has the most awful wind, which makes him uncomfortable (burping all the time). Is this because of the liver problem? Does anyone know?

Rain, July 27, 2003 - Hi Caregivers, My name is Rain. My mother had a CHF episode 2 weeks ago and I have just come home. She almost died last year from a carotid artery that was 99% shut. We live some 100 miles apart, but I have always been there for her when she has been ill; and she seems to have been ill more and more lately. This scared both my brother and I again.
     I don't know much about CHF, but her doctors said that a blood clot was blocking one of her main arteries and she couldn't breathe in or out. Fortunately, she didn't need angioplasty or a bypass. The clot is small enough that it can possibly be reduced with blood thinners, diuretics, and changes in diet and exercise.
     Still, we were told there was no guarantee that it wouldn't happen again even with all these precautions. Doctors are so optimistic. ;-) My mom is a highly intelligent and feisty woman, and is extremely independent. I tend to stand back and let her do what she wants, and I'm just there as comic relief and sounding board. This time it was a little different.
     Her sleeping patterns got all screwed up and she was sleeping all day and was up all night. She refused to take any sleep medication to help her stabilize herself. She seemed more agitated and frustrated and even depressed. Who could blame her as I looked at what she would now have to give up - a whole life style gone in a split second? She's not one who wants to be comforted or reassured either.
     My brother lives nearby and he's a doctor. My mom has numerous neighbor friends who look in on her, but it was very hard leaving her this time; like something wasn't complete. I have a family and have been very ill myself for the last several years with 2 chronic diseases. With the changes my mom has to go through now, I guess I'll have to turn back into Clark Kent and trust that she'll be taken care of, even if I can't be there all the time. I am planning to visit more often and will definitely call more often and send funny cards with some money, because she enjoys things like that.
     Thanks for listening. If anyone has any info on CHF and it's progression, or how to keep it more under control, please let me know. Rain.

Gail B, July 29, 2003 - Hello, I just found this list. I have a question I haven't seen addressed before. My mother has CHF, diagnosed in December. She is 77 years of age. She has in the past one month, had an ICD/pacemaker put in as well as 2 stents (3 coronary arteries were almost completely blocked) and has had a recurring problem with anemia, with hemoglobin levels dropping to 5.5.
     My question is, what does dementia have to do with this? She had a normal memory a month ago and for the first week or so of the hospitalization; then literally overnight she couldn't remember anything short-term. She had no memory of who had visited her in the hospital or what procedures she had, or what the problem (CHF) was, or of her one week stay at a nursing home until she was readmitted to the hospital on Wednesday.
     She was not senile before at all. I'm not sure the doctors believe us about that, but it did literally happen overnight and has not returned. In fact, it seems to be worse now. I just spent a month where she lives and visitd her twice daily with my son. Now she doesn't remember us being there. Is this a common experience? I doubt it and am wondering if anyone has any input? Thanks, Gail B.

Sheryl C's July 29 reply to Rain's July 27, 2003 - Hi Rain, Your mom sounds a lot like me. You are lucky to have found this site; there is a lot of info here. Your mom and you need to read The Manual. There is a lot your mom can do to help with CHF symptoms. By making a diet and exercise plan, she will feel like she has more control over her own life and this will help overcome the depression. She needs to consult her doctor about both.
     It is normal for her to be angry, sad and depressed about her condition, but these are feelings with which she has to deal and get over. She may not want to burden you with her feelings. Moms are used to being the ones who deal with problems and it is hard to reverse the roles. Encourage her to talk to someone. All these negative feelings will come and go depending on how she feels physically.
     It is great she has such caring sons and that fact will help her feel better about life. All of you will have adjustments to make. Have her read the posts on the other forum so she knows that she is not alone in her problems or feelings.
     As for you being Superman/Clark Kent, that self image will get you right where your mom is: With heart problems. You can be supportive and helpful but you can't cure your mom or force her to deal with this disease. She has to make that decision. She needs to know that in time, she can feel better if she follows all the medication, diet and exercise rules. Help her learn about her disease, encourage her to have hope, and get a plan of action going.
     Get on top of the sleep thing too. With my doctor's permission, I take a Benadryl when I have trouble sleeping, but lots of us take prescription medication to help when needed. There can be a fear of going to sleep because you might die during the night. Time will help with that fear. Meanwhile, life will be better if she sleeps. Sheryl C.

Katherine H's July 29 reply to Gail's July 29, 2003 - Hi Gail, Often older people when they are hospitalized become affected by what I think is called "Sundowner Syndrome" and go into a dementia-like state. One year before my father died of multiple organ failure, he was hospitalized and developed dementia: We had tea at Buckingham Palace with Queen Victoria (he was very annoyed with us as we didn't have our white gloves) and he told the doctor about a trip on the Silk Road between Nepal and China. We had to laugh - it seemed better than crying. Once he got home he was fine again.

Susan B's July 29 reply to Gail's July 29, 2003 - Dear Gail, There may be more than one reason your mother is having memory problems. As you said that she had several procedures done, she may have problems recovering from the anesthesia, if any. According to my grandmother's doctor, it can take over 6 months to fully recover from anesthesia. My grandmother took about a year to be clearheaded again after a major operation.
     Second, CHF may mean less oxygen to the brain. This can lead to memory problems. Also, according to theory called NLP, your brain can delete and distort memory when under stress. I know that my mind deletes things like where my car keys are. It could also be the combination of drugs that your mother is taking. Some drugs don't work well together for some people.
     I would keep asking questions and look for some more information about what can be done to help with her memory. I hope this helps, Susan B.

Gail B, July 30, 2003 - Hi Katherine and Susan, Thank you for your input. Yeah, between the anesthesia, oxygen deprivation (from the anemia as well as the heart problems - her heart function is at 10%), as well as being in the hospital long-term, maybe all those things contribute to the memory loss. It all happened on a Thursday night: Suddenly her memory was just gone.
     She's been through a lot in the last month, though. My mother is a person who had not been to a doctor since I was born 38 years ago, and has had little more than an occasional cold throughout her life. So this whole thing is a shock, to so suddenly lose her mentally while doctors are doing all they can to prevent us from losing her physically.
     She and my 85 year old father live on the other side of the country from me, and I am their only relative. I also have a 5 year old child so it's very hard to keep picking up and leaving. In some ways I'm still in denial about the whole thing. I appreciate your ideas and shared experiences. Thank you, Gail.

Carrie, July 30, 2003 - Hi, My Dad is 77 years old and has CHF. He has had heart problems and been on medication for the last 15 years, but about 9 months ago he was diagnosed with CHF for the first time, although his symptoms I now know have been there for much longer.
     He is at the moment in the hospital after being admitted last Friday with breathing problems. Once there, doctors promptly stopped all his meds as they found he has liver damage and because his blood pressure had dropped dangerously low. He is having extra oxygen all the time and he can't breathe properly without it. He has edema in his legs. He also has a buildup of fluid in his stomach, which they don't seem to be doing anything about. He is having a hard time swallowing anything but mashed up fruit and says he doesn't feel like eating but is drinking still. He has become doubly incontinent since being in the hospital and the oxygen is having a hard time getting to his brain; he keeps nodding off in mid-sentence. He has done this for the last 2 years, but it is much more often now.
     All in all I am completely at a loss as to what to do for him other than to spend as much time as I can with him in the hospital. I have tried to make an appointment with his consultant but can't get through to him. I am scared that we are nearing the end of the road and none of us are prepared for it. I lost my mum last year to pancreatic cancer and no one told me that she was near the end. That was something I had to find out from a wonderful forum for that disease, and without it I would have been completely unprepared for it!
     We live in the UK so I can't just demand to talk to the consultant. Over here with the NHS, that just doesn't happen! Many thanks for any advice you can give me. It's the not knowing anything that is getting to me. Carrie.

Glenda, July 31, 2003 - Hi, I just wanted to check in with other caregivers. My husband was diagnosed with CHF a few days ago, and I'm still kind of brain-dead. I don't feel like I have a grip on the situation yet. I'd love to hear any good ways you have of taking care of yourself, so you can take care of your beloved patient.

Jan's July 31 reply to Glenda's July 31, 2003 - Hi, It is all too hard to hear such news about your loved one. I felt in a fog-like state too when my husband was diagnosed. All at once, it was CHF and 12 days in the hospital. On top of it, he left as the owner of an ICD.
     Believe me, things do settle down after a period of time. You really do need to take care of yourself during this time. I make sure I can function well by eating properly (we all learn how to cook low sodium) and making sure I get to practice yoga at least 4 days a week. For me, it does wonders on how I can handle all the extras we take on. Good luck, God bless, and drop me an e-mail if you need to talk.

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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