The paperwork never ends The Archives
Loved Ones - January, 2003 Archive Index CHFpatients.com

Lois B's 1-1 reply to Carole K's 12-31     nursing homes and dobutamine
 
Annie G's 1-1 reply to Carole K's 12-31     dobutamine
 
Carole K 1-2     seek dobutamine info, thanks
 
Francine 1-2     is mom's slow heart beat related to her CHF?
 
Ellen 1-2     seek advice on health insurance for self-employed
 
Francine's 1-3 reply to Ellen's 1-2     some possibilities
 
Susan B's 1-4 reply to Ellen's 1-2     state regulators
 
Carol 1-4     seek help with bad cough
 
Ellen E's 1-4 reply to Francine's 1-3     thanks!
 
Ray 1-6     seek CHF doc in south central Oklahoma region
 
Jon's 1-6 reply to Francine's 1-2     slow heart rate
 
Francine's 1-6 reply to Jon's 1-6     getting anxious, thanks
 
Rose 1-8     seek myoblast transplant info
 
Jon's 1-8 reply to Rose's 1-8     some myoblast transplant info
 
Carole K 1-9     my mom died
 
Diana 1-9     seek caregiver coping strategies
 
Anita S' 1-9 reply to Diana's 1-9     coping with caregiving
 
Diana's 1-10 reply to Anita's 1-9     thanks, coping with caregiving
 
Lorraine's 1-10 reply to Diana's 1-9     coping with caregiving
 
Francine's 1-10 reply to Carole K's 1-9     condolences
 
Diana's 1-11 reply to Lorraine's 1-10     that's true
 
Vonda 1-11     seek CHF pacemaker experiences, info
 
Lorraine's 1-11 reply to Vonda's 1-11     CHF pacemaker experience
 
Donna H's 1-14 reply to Diana's 1-9     coping with caregiving
 
Deb F 1-15     coping, venting
 
Lynn 1-16     should I worry?
 
Diana's 1-17 reply to Donna's 1-14     coping with caregiving
 
Diana 1-17     are vision disturbances common?
 
Paul R's 1-18 reply to Lynn's 1-16     sometimes it's not from the CHF
 
Susan 1-23     with Heartmate VAD, long road - seek experiences
 
Donna H 1-23     update and prayer request
 
Carol's 1-23 reply to Susan's 1-23     LVAD experience
 
Rosemarie 1-23     seek Coreg experiences & more
 
Deidre 1-28     how do I cope with all this?
 
Elizabeth Barajas 1-28     teenage son has hypertrophic cardiomyopathy - what to say?
 
Donna H's 1-29 reply to Elizabeth Barajas' 1-28     hypertrophic cardiomyopathy web site
 
Aida's 1-29 reply to Deidre's 1-28     dealing with very difficult situations
 
Aida 1-29     how to gain some weight in class 4 CHFer?
 
Donna H's 1-29 reply to Deidre's 1-28     coping with CHFer spouse
 
Rosemarie 1-29     seek kidney function info & more
 
Deb F 1-31     my mom died
 
Anita S' 1-31 reply to Deb F's 1-31     my mom died
 


Lois B's January 1reply to Carole K's December 31, 2002 - Dear Carole K, The answer I received when I asked was that most nursing homes do not have the trained personnel to deal with dobutamine. There were 3 homes that would take him, but they were the overcrowded, non-recommended homes. When I questioned the hospital social worker why those would accept, she had no answer.
     It seems the good nursing homes do not want to be responsible for a person on inotropic infusion. We had the choice of taking him off dobutamine after being on it 10 months and going to hospice, but so far we have stayed with the visiting nurse 4 times a week at home. The pain is getting worse and we will probably go to the morphine pump this weekend. For 10 years we have had the same wonderful cardiologist who has been very supportive and worked very well with the visting nurse this last year.
     Thanks for your interest and care. We are doing well, Lois. lsom1017@aol.com


Annie G's January 1reply to Carole K's December 31, 2002 - Hi Carol and Lois, Regarding the dobutamine not being accepted at nursing homes, until recently depending on where you live, dobutamine was a medication used only in intensive care units of hospitals because it was such a potent drug that was used in critical situations where the patient had to be on a heart monitor and have blood pressure almost contiuually monitored. Depending on where you live, home dobutamine may still not be available. In the hospital where I work, nurses on medical and surgical floors cannot care for a person who has a dobutamine infusion; it can be used only in the ICU or the step-down unit. I beleive our outpatient dobutamine program is only about 2 years old.
     I expect it is a liability issue with nursing homes. At one time, morphine was only given by IV in ICUs too. As experience with long-term dobutamine usage occurs I would expect that nursing homes will eventually accept these people. This doesn't help anyone right now. Also this is my uneducated guess and not from any research, Annie G. annieg129@cogeco.ca


Carole K, January 2, 2003 - Hi Annie and Lois, Thank you both for your answers. As I have mentioned before, my mother is 88 years old with end-stage heart disease. It has never been suggested that dobutamine be used in my mothers care. Could it help her? I am not familar with this med. Is there a point that dobutamine does not help the patient? Carole. ckennedy@appliedtm.com


Francine, January 1, 2003 - Hi, I just found this site today, and feel like it will help me. My mom is 77. She suffered a massive stroke 5 years ago and is in a nursing home. She is paralyzed on her right side, with minimal speech capabilities. This past summer she was diagnosed with CHF. Now she has been diagnosed with bradycardia. We are taking her to a cardiologist. I know the bradycardia is a slow heart beat. Is it related to the CHF? I am thinking it is the next phase of this situation. I hope to find support here. Thanks for listening, Francine. mary-poppins@attbi.com


Ellen, January 2, 2003 - Hi, I am writing in desperation. First, let me say hello to all of you, and I wish you the best. I know how much of a burden living with CHF can be. My problem is that I am trying to find individual health insurance for my mom, who is self-employed has been diagnosed with CHF. Previously she had Blue Cross via her husband's job, but now that she is divorced and her COBRA has lapsed, I am finding nothing but shut doors at every insurance company I have tried. Can any of you recommend a reliable IC? I sincerely appreciate any help you can give me, Ellen. ekkoland@yahoo.com


Francine's January 3 reply to Ellen's January 2, 2003 - Hi Ellen, That is a tough situation. If your mom has her own business she may be able to hook up with health insurance through her local Chamber of Commerce. You could also look into local business associations. For instance, right now I have health insurance through my work and they carry it with the Massachusetts Business Association. It is expensive. For a single plan my cost is $370 a month. Another thought is to see if she can hook up through a state aid plan or state insurance pool. Depending on the stage of her CHF and her income, she might qualify.
     My family ran into trouble with health insurance recently. My husband is disabled and is on Social Security disability. Our income put us $140 over the state's income limit. So no Massachussetts Health for us. My husband is a veteran so he gets all his medical care through the VA. I was able to hook my 14 year old up through Massachussetts Health and pay them a monthly premium of $10. I didn't qualify for anything so I had to pick up the single plan. mary-poppins@attbi.com


Susan B's January 4 reply to Ellen's January 2, 2003 - Dear Ellen, I hope this helps you. Every state is different so I don't know what will be a option in your state, or should I say, your mother's state. Each state has a commision or commisioner(s) that regulate insurance. In order to sell any type of insurance, the insurance company must submit information, rates, ect., to the regulator(s). In my state, the insurance commisioner has a web site with the names, addresses, phone numbers, and other important information about every insurance company selling insurance in my state.
     Now, it does take time to search, but you can call every company selling health insurance and apply. I have not called the regulator in my state but I have written them when I have had problems with an insurance company paying bills. The company hops to and answers the insurance regulators. In some states they are required to answer within a set amount of time. Good luck, Susan B. gbracher@kc.rr.com


Carol, January 4, 2003 - Aloha, I am new posting to this site but I am at my wit's end about a chronic cough my husband is experiencing. It really affects both of our sleep. He was on lisinopril, but was changed about a month ago to Cozaar to help the cough. Unfortunately, it is worse. The dcotor does not seemed concerned. Should I be, or will it take longer to adjust to the new medication? My husband is also on chemo for a non-Hodgkins lymphoma. I am told a cough is not a side effect of that. Any ideas? pilikia2@gte.net


Ellen E's January 4 reply to Francine's January 3, 2003 - Hi Francine, God bless you, I never considered chamber of commerce and we do have a local business association that I can contact. I was already aware of the Medicaid option and if for some reason she can't even get insurance through a business structure, she may have to resort to Medicaid. The problem with this though, is that she feels that it's "welfare" and is adverse to considering it an option. You see, back when we were all younger, we hit economic bad tmes when my father died and subsequently we had to apply for food stamps and other aid. My mom was traumatized by this, I think. Again, I thank you for your help. Take care, Ellen. ekkoland@yahoo.com


Ray, January 6, 2003 - Hi, My mother in law had an anterior MI while on a visit to Delta, Colorado recently and is under care there for developed CHF associated with underlying cardiomyopathy, valve problems, and severe hardening of the arteries. She is 91.
     I have been unable to find an adequate hospital, doctor, or clinic here in extreme south central Oklahoma. Does anyone have knowledge of such near the Lawton, Oklahoma area, other than Oklahoma City?
     I am paraplegic and my wife is unable to drive the 200 miles to Oklahoma City on a regular basis. I am considering advising her to remain in Delta since there is medical help readily available there. Although I would like her to return home, her comfort and survival are more important to me. Thanks, Ray. cedarsmoke@simplynet.net


Jon's January 6 reply to Francine's January 2, 2003 - Hi Francine, Usually, a person's heart rate increases when they get CHF due to the body making it pump faster to make up for it pumping less blood per beat (weak pumping). Slow heart rate can have various cases, all needing to be thoroughly checked out. Jon.


Francine's January 6 reply to Jon's January 6, 2003 - Hi, Thanks for the response, Jon. I am taking her to a cardiologist to find out what the cause is. My anxiety levels are a bit high since every day there are new little reports from the nursing home. I am starting to feel she is getting weaker, Francine. mary-poppins@attbi.com


Rose, January 8, 2003 - Hi, Does anyone have any information on trails where muscle cells are harvested, grown in a lab, and reinserted into damaged hearts to get new muscle? rosietherosarian@yahoo.com


Jon's January 8 reply to Rose's January 8, 2003 - Hi Rose, There is some info at Surgery Archives, CHF Surgery , and the HeartBytes Archive. Trial info can often be found at Centerwatch. Stem cell therapy info along the same line in many people's minds can be found at CHF Surgery and again at CHF Surgery. Jon.


Carole K, January 9, 2003 - Hello to everyone, I am saddened to tell you that my mother, Anne Taylor, went to her heavenly home on January 2, 2003. After attending a church service at the nursing home, she was sitting at the dinner table (not wanting to eat her lunch) talking with the little lady next to her and just left this earth. There was no struggle, no apparent pain, she just left. I was saddened that I was not with her but was happy that the good Lord chose to take her so peacefully.
     I am thankful to you Jon and this site for all the information and guidance that was available to me. Also, to all of you that responded to my questions and my request for prayer, I thank you. If I can help someone by sharing my experiences I would be happy to do so and I will continue to monitor this site.
     God bless you all and I pray that you will stay well. Love, Carole Kennedy. ckennedy@appliedtm.com


Diana, January 9, 2003 - Hi, This is just a question for caregivers. Do you all just get bone tired and feel like you can't do another thing? My husband is in end-stage CHF and emphysema (so says his diagnosis). He is now on oxygen and is unable to do anything for himself but use the urinal. I work full-time and when I get home, I get supper, take care of him, the house, and whatever else needs to be done like grocery shopping, etc. My husband used to do all the cooking and groceries. I find myself just so tired all the time.
     Besides being tired, I find I worry about him nearly all the time when I'm gone. I don't have any help at home. The home health nurse comes in to check on him about once a week. We won't consider hospice or anything like that for now and I just wonder what you all do to recharge your batteries!
     This really sounds like I'm complaining about our situation but it's not really that. I just want to be better able to cope with all that's going on. dianadeewilson@yahoo.com


Anita S' January 9 reply to Diana's January 9, 2003 - Hello Diana, I understand how you feel since I also am a caregiver, even though my husband isn't in end-stage CHF. We all get tired, worried, and don't know how we can keep going sometimes.
     I was wondering if you have checked into taking some time off from your job with the family leave act. My daughter-in-law's father has cancer and she is allowed to take off a day or two whenever she needs it to be with him. She was granted so many days in a year, without pay, to take whenever she needs it. This way you won't lose a whole week's pay but you can take a day off if you feel that you just need to be home that day and you can afford to lose the pay that week.
     I wish that I could offer you some advice to help but the only thing that I can think of is to take care of yourself. You don't want to get run down and sick yourself. Maybe you could take a day off and just relax. Is there anyone in your family who could help you so you can just rest for a few hours? I'll be thinking of you and saying a prayer that you can keep coping. Take care, Anita. dreamersila@netscape.net


Diana's January 10 reply to Anita's January 9, 2003 - Hi, Thanks for the encouragement, Anita. Actually, my employers have been very understanding as far as work goes so that's really not the problem. As you know, it's just tiring being the sole caregiver. Christmas season seemed to put an added burden on me this year, trying to make everything "happy" for the family and thinking all along this could be the last Christmas we have all together.
     I'm just worn out and feel like I'll never get enough rest! But venting helps a little bit and knowing I'm not the only one going through this helps too. This web site has been so helpful to me even if I just read and don't post much. I know with God's help everything will work out according to His will, and I do rely on that promise so much. Thanks again, Diana. dianadeewilson@yahoo.com


Lorraine's January 10 reply to Diana's January 9, 2003 - Hi Diana, This is just a note of encouragement. I am the sole caregiver for my husband, who is in class 4 CHF. He can do very little for himself. When I begin to feel sorry for myself, I read a post here and find my situation could be much worse.
     His problems did not start until after we were retired and had done lots of traveling. I don't know if I could handle this as well if I was still working. I do get very tired at times but have learned that I can't do it all and I try not to let it bother me too much when some things just don't get done. We have no family close around so there is no one to stay with him if I go anywhere. He insists I continue going to Sunday school and church on Sundays so that is the longest I leave him and I just trust God to take care of him while I am gone.
     We had lots of company during Christmas and it was more stressful than usual but he enjoyed them all. You just hang in there and take time to relax at times. God bless you, Lorraine. gandlsimpson@msn.com


Francine's January 10 reply to Carole K's January 9, 2003 - Hi, I am glad your mom's passing was so peaceful, Carole. I hope the many happy memories you have will help console you in the days to come, Francine. mary-poppins@attbi.com


Diana's January 11 reply to Lorraine's January 10, 2003 - Hi, I appreciate you sharing your situation and your advice, Lorraine. You're right about this forum and finding that things could be worse. It's always better to stop and count the blessings we have than the troubles! Take care, Diana. dianadeewilson@yahoo.com


Vonda, January 11, 2003 - Hi, A couple of months ago a very nice lady responded to a question that I posted. I lost her e-mail address so I am going to ask the question again hoping that she'll respond. My question was this: My mom's CHF specialist suggested a biventricular pacemaker that we have reservations about. They say that mom is in her last stages of heart failure and would benefit from it. Of course, we want to do everything possible to help her, but for about 6 months she had a very hard time and almost died. I don't want to take any chances. She is much stronger now but I'm not sure if she is up for surgery. She is only 57 years old. I hope that the lady who offered help before reads this. Thanks everyone, for your support! jmgandme@aol.com


Lorraine's January 11 reply to Vonda's January 11, 2003 - Hi Vonda, I may be the one who replied to your post about the biventricular pacemaker. My husband received one in October of 2001. His old pacemaker was 7 years old and on its last leg so when I read about the new ones that could help CHF patients I asked his cardio doctor and he decided to go ahead and change it.
     My husband was already class 4 and on IV therapy but the new pacemaker did seem to help and it is not a big operation. He was not put to sleep for this one nor his first one back in 1994. He spent 2 nights in the hospital on a monitor. He was the first one done at that hospital and by our doctor. He got along fine, though.
     This one is a little larger and has a third lead so the pocket had to be made a little larger to take care of it. My husband will soon be 76 and has battled CHF since 1994. I hope this info helps you decide what to do. These new pacemakers help some people a whole lot and some just a little. God bless, Lorraine. gandlsimpson@msn.com


Donna H's January 14 reply to Diana's January 9, 2003 - Hi Diana, Although my husband is in class 3 instead of class 4 CHF, I do understand how tired you are. I think that some of it isn't the work, but the constant stress and worry.
     I also work full-time and since I run my own business and have no employees, I can rarely stay home with him. When I am closed, we have no income and if I hire someone, it takes all my profit to pay them. Those are just the bad parts of it. The good part is that I am able to bring him to work with me most days.
     I think one of the most difficult things for me is that I have difficulty asking for help. I want to do it all by myself and it just isn't possible. I still have one child at home and will miss her help when she goes away to college next year.
     One of the things I have done is lower my standards. I make sure the important things get taken care of but try not to let things overwhelm me. The most important thing is the time you have left with your husband. Laundry, work, dishes - all of that will be there later. Do what you can to make your life easier, if it means using paper plates or whatever.
     I know what you mean about Christmas. This year I just didn't take the time to put up a tree, and 3 days before Christmas my kids did it for me. I had wanted one but it just seemed like one more thing to get done. Hang in there. herdrich@grm.net


Deb F, January 15, 2003 - Hi everyone, I'm having trouble sleeping tonight and thought maybe I'd vent a little, if you don't mind. It was a tough day. My mom is living in a nursing home in end-stage CHF. Last week she signed up to receive hospice care. Well, some of her papers and chart were missing or not all the right people at the home knew this, although they do now.
     We had mom's first quarterly care meeting and what a day for it?! Also, the monthly doctor's visit was this morning. Mom also suffers from GI bleeds and the doctor has ordered blood labs. If mom's hemoglobin is low, he is recommending blood transfusion for symptom relief. This created a huge misunderstanding since one of the considerations for hospice care was that no life-saving measures like blood transfusions would happen anymore. Anyway, our hospice nurse consulted with the doctor and has agreed with him, and hospice will cover a tranfusion. We'll find out today what her hemoglobin is and go from there. The reasons were for relief for respiratory distress and nausea. It was tough because it sounded like mom had changed her mind about hospice, she wanted one last transfusion and it took a few hours to get to the bottom of it.
     Meanwhile, I was working, which I hadn't been doing for the past couple weeks. Not being at the home when the doctor visited didn't help although I did come in for an hour and a half for the meeting and to get things straightened out. My supervisor has been understanding about me needing to take off when necessary. I go in before and after work too. I went to bed early tonight and mom called around 11:00 PM because she couldn't sleep, so now I haven't been able to get back to sleep.
     She has been having nightmares the past several nights. Every day she loses about a pound. Today they started grinding up her meat so maybe she'll be able to eat a little bit more. She hasn't been able to eat much without gagging or vomiting but is on scheduled compazine suppositories for nausea and that has helped. Also, she gets her meds after eating instead of before her meal. The dietician explained what is happening, saying that every breath mom takes she has to decide to breathe, which is not easy to do. It's the same with swallowing and chewing: she can't take a breath and swallow at the same time so she has to choose between the two. Appetite is one of the first things to give up since breathing becomes more important. Drinking Ensure and water, and soft foods like jello and pudding go better and she can still handle them.
     It's just tough to watch her change physically. She always wanted to lose weight and be at her new weight, but not this way. She jokes about her pants falling off and her clothes being too big but inside we aren't laughing about it. My prayers go out to those of you also dealing with this. I pray that we all can pull up the strength to cope and see something good in each day even on the bad days. Thanks for listening, Deb F. debkay@xtratyme.com


Lynn, January 16, 2003 - Hi, I am concerned about my hubby, who is 51 years old. He has been experiencing pain on the left side of his chest. He had an EKG two years ago and he went to the doc this past Friday, January 11. The doc did another EKG and it was different from the one 2 years ago. My hubby is scheduled for a stress test this coming Monday. Should I be concerned? Could this abnormal reading be nothing? Any input would be appreciated. Thanks. grami97@webtv.net


Diana's January 17 reply to Donna's January 14, 2003 - Hi, I think you've hit the nail on the head, Donna. The stress and worry that go along with everything else just take so much energy! I have a college age daughter too, but she has moved home this semester (doing her student teaching in our town) and it has been a help having her home; not that she really does so much (she doesn't have a lot of time between the student teaching and working every evening) but she's here and I can talk to her and it just helps to have someone share the burden.
     I appreciate your response. You seem to know exactly what we're going through and how I'm feeling. It does help to know others are going through the same things. Take care of yourself and your husband, Diana. dianadeewilson@yahoo.com


Diana, January 17, 2003 - Hi, I have a question on behalf of my husband. He has CHF, emphysema, and medication-induced diabetes. He's been experiencing some loss of vision and double-vision. Is this a common occurrence in this type of situation or is something else going on? We were at the doctor's on Tuesday but of course he didn't think to mention it to the doctor or even to me until last night! Diana. dianadeewilson@yahoo.com


Paul R's January 18 reply to Lynn's January 16, 2003 - Hi Lynn, I was having chest pains and I thought it was my heart, because I got an ICD just last October. I am age 59. I went to the doctor and found out I have cold weather asthma! What a relief. Asthma, I can handle.
     What I'm saying is that the pain may be something else. Be concerned and do the right thing. That is what you are doing by going in for the stress test, but do be aware that it could be something minor and even possibly not related to CHF at all. God bless, Paul. PaulRyberg@earthlink.net


Susan, January 23, 2003 - Hi, I am the caregiver for my 34 year old husband that is waiting a heart transplant (1b). He has a Heartmate pump implanted in his chest. I just would like to have someone to chat with that has been through any of this: the waiting, the caregiving, everyday things. We used to both work but now neither one of us can. He needs 24 hour supervision while having this pump.
     How does a family get through this? We still have a long way to go yet. I could use some advice on what I should be ready for when it comes time for the heart transplant.
     Thanks, I hope to hear from anyone about anything at this point! theboss6756@yahoo.com


Donna H, January 23, 2003 - Hi, We went to a new cardiologist yesterday. Although the news wasn't necessarily good, he did give my husband some alternatives. He listed 3 things that might be done to help him. The first was a heart transplant. My husband doesn't see it as a viable alternative but I have been doing some research anyway. The second was an AV node ablation and the third was a dual lead pacemaker instead of the single lead that he has now. He goes back Friday for more testing so please keep us in your prayers. herdrich@grm.net


Carol's January 23 reply to Susan's January 23, 2003 - Hi Susan, I'm a caregiver and everything else for my wonderful husband! He has had the LVAD since August 15th. He's had 2 small strokes, which haven't helped. He's depressed, but I try to keep things cheery around here, which is hard at times. We just lost our precious cat to top things off. We have been on the transplant list for 2 years. I pray every day, enough said. Hang in there! jcloyd@mikrotec.com


Rosemarie, January 23, 2003 - Hi, I wonder if anyone else has experienced anything similar with their loved one. Frank recently visited his cardiologist complaining of increased breathlessness, coughing, lack of energy, insomnia, problems with his feet and sometimes legs, etc. The doctor decided to cautiously change his medication and reduced his Capoten (captopril - ACE inhibitor) from 75mg TID to 12.5mg BID and also his Aldactone (spironolactone) from 50mg per day to 25mg per day. He also introduced a beta-blocker called Coreg at 3.125mg per day.
     He warned us that Frank might get increasingly dizzy but encouraged him to try it for 2 weeks and then he would increase the Coreg to 6.25mg a day. Frank has experienced increased coughing, nausea and feeling bloated, loss of appetite and breathlessness has worsened and the insomnia continued. When I spoke to the cardiologist about this, he suggested taking him off his 0.25mg digoxin (Lanoxin) for 2 days.
     We are both now really confused and wondering whether the change in medication has made things worse or if this is just a coincidence his cardiomyopathy is progressing. Two years ago we had a similar situation when another doctor stopped his ACE inhibitor because of the cough and Frank went into heart failure. I'm not sure whether these medication names will mean anything to others reading this but if they do, I would really like to hear other people's experience. bullockf@iafrica.com


Deidre, January 28, 2003 - Hi, Can anyone help me with the emotional aspect of being a CHF caregiver? My husband is so depressed that it is really having a negative affect on our family. He has been to counseling throughout the past few years, never consistently, but continues to take out his frustrations on us. We are growing apart because he won't let me in and I resent it. He is confiding his misery to our 19 year old daughter who is now taking on the role of his emotional support. This is not good for her. She is a psychology major in college so she thinks she can help him. I see the stress this is putting her under. My husband talks of suicide and leaving us, so we can have a normal life. I am so tired of the emotional rollercoaster that I'm afraid I'm going to have a breakdown. Any advice? Baysmom1959@aol.com


Elizabeth Barajas, January 28, 2003 - Hi, I am looking for some support with my son's heart defect. The name of his disease is called hypertrophic cardiomyopathy. He is only 16 years of age and he is very afraid. He talks about he is going to die some days. I really don't know what to say to him. Any help would help me. Thank you, Elizabeth. lizpandabear@aol.com


Donna H's January 29 reply to Elizabeth Barajas's January 28, 2003 - Hi, Have you been to http://www.4hcm.org/WCMS/index.php? A girlfriend gave me the address to that site some time ago. I hope you can find some relevant information to share with your son, Donna. herdrich@grm.net


Aida's January 29 reply to Deidre's January 28, 2003 - Hi Deidre, All I can say is pray, pray, pray. If you can, believe that your prayers will be answered. If you can't bring yourself to believe, pray to be able to believe.
     We are in a similar situation with my husband. He has become totally absorbed in his illness and wants everything to constantly revolve around him, and wants everyone to always be aware of his condition. I feel like we are all so aware at all times now that it is hard to function normally anymore. He is also extremely depressed right now, but of course denies it. We love him dearly but he smokes like a chimney, and adamantly refuses to stop, claiming he is too addicted.
     I have 2 teenagers, a daughter who is 15 and a son who is 17. My husband is classified as a class 4 with a 10% EF. He has been on disability for 3 years now. He still gets up and does what he can around the house; he has always been very good in this respect. He cannot stand to be idle but he won't rest like I think he needs to, which is very frustrating. He is deteriorating almost daily and will sit in a chair and nod off or wander around the house barely able to stand or walk but he fights going to bed.
     Occasionally he has some good days that seem to come in spurts, but more and more it seems he is having more and more bad days and they are lasting longer and longer. My kids are a bit on the wild side and there is an awful lot of tension here at our home. Deidre, pray. It is what I am trying to do now. I am also praying for faith. I need to believe. Peace. Hey720@aol.com


Aida, January 29, 2003 - Hi, Does anyone have any experience with cardiac cachexia? Can anyone give me any information on this - any nutritional supplements, powders, vitamins out there that we might look at that could help someone with a class 4 cardiomyopathy gain weight or muscle? My husband has now lost about 30 lbs and I am getting desperate. Help! Hey720@aol.com


Donna H's January 29 reply to Deidre's January 28, 2003 - Hi, Your post hit very close to home for me. I have 2 daughters, ages 26 and 18. Throughout the last 2 years I have wondered how much to confide in them about their father's illness. You didn't say how long ago your husband was diagnosed or how ill he is. I have found that with my husband, he feels more depressed when he doesn't have something to do. Because of that, he comes to work with me and helps me even though many days he really doesn't feel up to it. Does he have any hobbies or interests that he is still able to do?
     Have you talked to his doctor about his suicidal feelings? One of the first thing my husband's cardiologist wanted to do was put him on an antidepressant. He took it for about a month but it had some side effects that he didn't like so he quit but the doctor offered other alternative drugs if he chose to take them. He didn't.
     Have you thought about counseling for yourself and your daughter? I know it isn't easy to afford or find the time for it, but I think it is necessary to your mental health at this time. I hope you find something that helps all of you, Donna. herdrich@grm.net


Rosemarie, January 29, 2003 - Hi, It's so reassuring to know that I can come to this site with my queries and invariably find someone who can help me. Thank you Jon, for this wonderful idea. I took Frank to the PCP eventually since he was struggling on his new medication mentioned in previous post. She put him back on to the old dose of Capoten (ACE inhibitor) and stopped the Carloc. He seems to be getting back to how he was before. She also did blood tests and gave me the results today, mentioning that his potassium levels were okay and also his digoxin levels, but his creatinin was 153 and urea 8.6. She said that his renal function had deteriorated, which was normal for cardiomyopathy. Can anyone out there tell me more about this please? bullockf@iafrica.com


Deb F, January 31, 2003 - Hi, With sadness, my mother passed away January 29. She was a very courageous and strong woman who fought till the very end. My brother and I were with her. I'm so sorry for anyone else who is suffering from this and for the loving caregivers. It was very difficult, especially the last 2 weeks. We became closer as a family and I spent every day with her the past month while she was in the end stages. I won't go into what happened but it is heart wrenching to watch. God's blessings to all caregivers and stregth to all who suffer with CHF. Thanks for your help along the way. debkay@xtratyme.com


Anita S' January 31 reply to Deb F's January 31, 2003 - Hi, I am so sorry to hear about the loss of your mother. I'm sure she was comforted by you and your brother being there for her in her last moments on earth. I was with my brother when he passed and it is very heart wrenching to watch someone you love die. It is something I will never forget. I wouldn't have missed it for the world, but those last few hours will be burned into my mind forever, as I'm sure your mother's last few hours will be for you. If there is any way that I can offer you comfort, please feel free to e-mail me. My thoughts are with you. Take care. dreamersila@netscape.net


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.

Talk to Jon Site Index