Phyllis E 7-2 CHF pacemakers & Disability question
Pam C 7-4 seek CHF doc in Chicago area
Jon's 7-4 reply to Pam C's 7-4 Marc Silver at Christ Medical Center
Clara 7-5 does anyone have experience with these meds?
Stefanie V 7-5 seeking hope & others' experiences
Jon's 7-5 reply to Stefanie V's 7-5 be sure to check other sites too
Alice 7-6 seek help - questions about symptoms
Cheryl T 7-6 need answers about aortic valve problems & surgery
Claire 7-8 meds side effects questions
Mark 7-8 how will my dad do now? seek other's experiences
Ann Marie K 7-8 update on mom & prognoses
Cheryl T 7-9 hey Jon, where are you?
Jon's 7-9 reply to Cheryl T's 7-9 I'm still here somewhere
Carrie B 7-9 my dad died
Stefanie V 7-11 thank you
Derik H 7-11 what is this procedure called?
Jon's 7-11 reply to Derik H's 7-11 the Batista Procedure
Jon's 7-11 reply to Stefanie V's 7-11 thank you & more
Sherry 7-11 update - has anyone else dealt with this?
Kathryn C's 7-13 reply to Sherry's 7-11 coping with the stress of caregiving
Sherry 7-14 coping, thanks to Kathryn & more
Dega 7-17 update, Coreg problems
Jon's 7-17 reply to Dega's 7-17 Coreg & more
Judy H 7-19 does he need more diuretics or,...?
Judy H 7-19 specialists, coping questions & more
Kathryn's 7-19 reply to Judy H's 7-19 coping
Todd Koenig 7-19 should my dad be taking Tylenol PM?
Jon's 7-19 reply to Todd Koenig's 7-19 it is the same as Benadryl
Bill D's 7-19 reply to Judy H's 7-19 swelling, meds, useful habits & more
Cheryl Thorne 7-20 update on Jim & prayer request
Helena 7-20 sure could use some advice & more
Jeanette W's 7-20 reply to Clara's 7-5 coping with CHF meds & more
John S 7-20 questions about my dad's CHF
Mary B 7-20 what to do about my dad & his sleep problems?
Jon's 7-20 reply to Mary B's 7-20 Tylenol PM & Benadryl have the same sleep ingredient
Jon 7-20 I have a new address & to Mary
Andrea 7-21 need to vent & have behavior questions
Ann Marie K 7-22 my mom died
Jon's 7-22 reply to Ann Marie K's 7-22 sincere condolences
Helena 7-23 do CHFers take calcium channel blockers?
Jon's 7-23 reply to Helena's 7-23 for what it's worth
Susan 7-23 questions - high protein diet, kidneys, edema
Jon's 7-23 reply to Susan's 7-23 high protein diets, kidneys, edema
Susan's 7-24 reply to Jon's 7-23 mother-in-law's care
Jon's 7-24 reply to Susan's 7-24 current standards of CHF care
Sherry 7-25 update on parents - rough time
Steve 7-26 what should I expect?
Jon's 7-26 reply to Steve's 7-26 have you read The Manual yet?
Monica F 7-27 seek advice about father-in-law
Paul B's 7-27 reply to Susan's 7-24 high-protein diets & CHF
Phyllis E, July 2, 2000 - Hi, My husband and I have a good friend back home with the same thing he has: CHF and cardiomyopathy. He got a device that allows the left and right ventricles to pump in proper time, making it more forceful. Our friend has a new lease on life. There is more info on it here and here. My husband is going to try for Disability after his September appointment. The only draw back is that he works out of the house for a large company which has been a lifesaver. However, it is sales and very stressing. He is 52 but in bad shape. Do you think it will keep him from qualifying? Thanks, Phyllis E. PErnsberge@aol.com
Pam C, July 4, 2000 - Hi, This is a great forum and I have learned so much from it. My Mom has CHF, which is complicated by COPD. A dear friend of our family for many years (a post-PhD researcher and global lecturer at Johns Hopkins) did give my Dad the name of a CHF specialist in our area but apparently the man doesn't return calls. Dad is still waiting for a reply and Mom says she can't possibly look for another specialist on her own. Can someone please recommend a CHF specialist in the Midwest, preferably in the Chicago area? Dad started calling 3 weeks ago. Mom is still exhausted after her most recent stint in the ICU. She came home 10 days ago and can still barely get out of bed and move around, and she isn't really improving. The area around her mouth was bluish again tonight when I went to check on her. I am only the daughter and they really don't want to listen to me but if I could at least give them another name, perhaps she would have a chance. She is a wonderful mom and only 69. Thank you all and may God bless you and yours. email@example.com
Jon's July 4 reply to Pam C's July 4, 2000 - Hi Pam, Click here.
Clara, July 5, 2000 - Hi, My husband was recently (2 weeks ago) diagnosed with dilated cardiomiopathy and V-tach. He had no previous symptoms that we know of until he had shortness of breath indicating he was going into CHF. His EF is 18%. He is on 10mg Zestril, 40mg Lasix, 0.25mg digoxin, 10mEq K-dur and 3.125mg Coreg. Has anyone had any experience with these medications? Are they effective? He is only 53 years old and we are still in a state of shock, and looking for any information available when I came across your web site. Thanks, Clara. firstname.lastname@example.org
Stefanie V, July 5, 2000 - Hello, I first found this site last year. My mom suffered a major heart attack in February of 1999 and was diagnosed with CHF. Her EF was 15%. My mother had been relatively healthy all her life until her heart attack. Her only complaint was that she would tire often and easily. When I found this site, I feared she was in the end stages of CHF. Others I read about were walking, gardening and carrying on with their lives; you know, good days and bad days. Mom was only having bad days.
In November of last year, mom was hospitalized in Little Rock and awaiting a heart transplant. It never happened because her antibody level was too high. In March of this year she was transfered to St. Luke's hospital in Houston, where Dr Frasier implanted an LVAD into her.The doctors refer to the LVAD as a "bridge to transplant" meaning it is the only thing keeping her alive until she can get a transplant. The LVAD is way too big for her little body and she is in extreme pain. Before she was allowed to return home, mom started having seizures. Now sheis home and still on the transplant list but her antibody level is still over 100. She is very depressed and horribly frightened by her power base and battery packs. Her flow rate is falling down to 4 and she calls Houston, and they tell her to get to them ASAP but she refuses. Finally, it was found that her flow rate is so low because she has dropped so much weight.
It seems mom has no hope left. She lies in her bed listening to the soft thump of her LVAD, yelling out when the pain becomes too much to bear. Please, I know how disheartening this all is but we need some hope, someone who understands. I don't know what we need. Mom made her peace with God and was completely ready to die or to live but I know she wants to really live, not merely be kept alive. Thanks for listening. email@example.com
Jon's July 5 reply to Stefanie V's July 5, 2000 - Hi Stephanie, First, your mom should not be in so much pain - period. If her doctors will not properly relieve her pain or fit her with a smaller device - many of which are in trials; some in Texas - she should get another doctor, even if it means going to another transplant center. Also, be sure to check into as many heart forums as possible to get the widest range of experiences. You can find a list of them here. Also, check into the other links available through my ICDs & More page. Jon.
Alice, July 6, 2000 - Hello, I haven't been here for some time because my husband's CHF seemed somewhat under control with all his swelling gone. He is a 78 year old retired professor and has been diagnosed about 2 years. Now he is losing weight and has no appetite most of the time. He is good about making himself drink liquids and is very good about taking all his meds. He has some good days but it seems that a few days out of each week he feels very bad, for no apparent reason. He gets weak and burps a lot and sweats. He may get chills. He is sleepy much of the time and takes several naps a day. Most of the time his mind is sharp but once in a while I notice some slurring of speech as if he is very, very tired but this just goes away. The doctor does not seem able to figure it out. Have others experienced this? What have you done? How do you get a good complete diagnosis? Do you know of a clinic that does this where he could go and stay just a few days and get a full workup? Would this help? firstname.lastname@example.org
Cheryl T, July 6, 2000 - Hi, My husband Jim, went to the doctor's today. He had an echo and the results were alarming. Although his EF has risen from 20% in February to 35% now, his aortic stenosis has worsened. The calculated aortic valve area is 0.71cm2, consistent with severe aortic stenosis. It was 1.1cm2 in April, based on a TEE. In April, the doctor said no surgery because they thought the risk outweighed the benefits but now they're setting up an appointment with a thoracic surgeon and we're scared again!
The CHF specialist indicated that they may have to cut back on Jim's Monopril and Coreg because of the valve problems. What do these drugs do that negatively effects the aortic valve? We attribute the increased EF to the monopril and Coreg. If they cut them back, will Jim slip back into heart failure? What are the symptoms of a bad valve? The doctor only indicated dizziness and lightheadedness. Jim has some of this but we attributed it to medication side effects. How do you tell the difference? Is this as serious as the doctor made it sound? email@example.com
Claire, July 8, 2000 - Hello, My 58 year old husband John, was diagnosed June 6 with CHF, dilated cardiomyopathy and cardiomegaly, with an EF of 10 to 15%. He was hospitalized and put on 0.125mg digoxin once a day, 5mg Accupril daily and 20mg Lasix twice a day. He developed rectal bleeding with terrible burning pain. The doctors say this is not a side effect from his meds but he didn't have this problem before he started on the meds. He is now taking amiodarone (Cordarone) and needs a pacemaker with a defibrillator implanted. Has anyone here experienced these symptoms while on these medications? Any help will be greatly appreciated. Thanks, Claire. firstname.lastname@example.org
Mark, July 8, 2000 - Hi, My father is 79. He has just been diagnosed as having CHF. I understand that his heart capacity is at 15%. Do I understand correctly that this is out of a normal level of 55%? Does anyone have a relative who has a similarly diminished capacity? What are his prospects for requiring long-term supervised care? He currently lives alone. He is otherwise in average health for his age (at best); Given that, what might be his prognosis? I appreciate any information, thoughts or stories. Thanks! email@example.com
Jon's note: Be sure to read The Manual and the EF page
Ann Marie K, July 8, 2000 - Hi, A little update on my 86 year old Mother who has CHF, diabetes, COPD, and is now on kidney dialysis: Mom is getting out of the Transitional Care Unit Monday after a 6 week stay. This is the third time in 16 months that she has been in the hospital for an extended period of time. I cannot explain her survivial other than she has been kept in constant prayer and has a great team of doctors. Her mind is still very sharp. I try to support her care and am constantly at the hospital asking questions. My Mom's EF is 13% and that has not been tested for at least a year. I am her main caregiver and as long as I can get her to dialysis, she will be at home with me. It seems that many people want a time frame of survival in regards to CHF in our seniors. I have been told twice that she wouldn't survive so I don't even think about it now. I take one day at a time and let God handle the rest. God Bless to all, Ann. Metaphlady@aol.com
Cheryl T, July 9, 2000 - Hi everyone, Jon, Do you have some input? I'm not getting any replies to my earlier message. I thought you'd at least have something to say. Are you feeling okay? I feel like I know you from this board. Thanks for being here for all of us. firstname.lastname@example.org
Jon's July 9 reply to Cheryl T's July 9, 2000 - Hi Cheryl, I'm okay. I am just tired. I have had a lot of exra responsibilities at home with my family, have been updating pages like a maniac, and clearing out mailing list articles to make time for the addition of a listing of CHF specialists that I hope to have up within 30 days or so. Usually, people from the other side help cover this board for me but some of them are in the hospital right now, Al died Friday night (I'm gonna really miss him!) and others have been busy helping me with the doctor directory thing. I just get stretched too thin trying to keep the whole site going and still be a real person for my family.
Not being a doctor, I simply don't know that much about heart valve disease because I haven't done the extensive reading about it that I have done about CHF. If someone with valve disease would answer, it would be a big help. I just don't know the answers to your questions. I would certainly corner the doctor and make him answer all my questions in plain English. I wish I could help help but my store of knowledge only goes so far. ;-) Jon.
Carrie B, July 9, 2000 - Hello everyone, I know I was new to the list but I just wanted to tell you that my daddy, Stuart Godwin, age 84, died from CHF recently in Glenbrook Hospital. I wish my dad would come back. I miss him so. However, he is with the One who has always been preparing His special place with Him; dad's special place in heaven.
Dad's CHF just kind of accelerated so fast, I never expected this and I don't understand. In a matter of weeks, even days or so it seems. But Jesus knows the whole story and my dad knew his Redeemer, praise God! Oh, but this is so hard, grieving. I miss him so much. The Almighty Lord has risen and on this I must trust and my hope. Love, Carrie. email@example.com
Stefanie V, July 11, 2000 - Hi, Thanks for turning me on to Jeff's site; it was very encouraging and Jeff is really nice. I've regained hope! Mom's doctor has given her a new painkiller patch and she is a lot more comfortable now. Thank you so much for this site! You have been an invaluable source for info and hope. Stef. firstname.lastname@example.org
Derik H, July 11, 2000 - Hi, My father has CHF and has asked me to find information about a surgical procedure he has heard of. The procedure involves removing a piece of the heart to shrink its overall size. Can anyone tell me what this procedure is called or where I might find information about it? Thanks for your help, Derik. email@example.com
Jon's July 11 reply to Derik H's July 11, 2000 - Hi Derek. It's the Batista Procedure. See articles here, here, here, and here. Watch the dates so you read them in "order." Jon.
Jon's July 11 reply to Stefanie V's July 11, 2000 - Hi Stefanie, I'm glad it helped. I'm a big believer in getting one's information straight for the horse's mouth, as it were. I have CHF and write about CHF, Jeff has an LVAD and he knows the reality of that. I also hope to get more heart transplant recipients to send in their real-life stories. It is great to hear that your mom is doing better and that your spirits have been lifted. Thank you for writing, Jon.
Sherry, July 11, 2000 - Hello Jon and everyone, I just wanted to write because my mother was rushed to the ER July 3. She had been put on a higher dose of 120mg Lasix twice a day and it was working for awhile. Then all of a sudden one day her sugar went out of control and she started retaining fluid extremely quickly. They diuresed her in the hospital and sent her home on Friday, but she wasn't doing well over the weekend. We took her to the doctor yesterday and he gave her an IV shot of Lasix, which usually does the trick. She went down 3 or 4 pounds from yesterday to today.
I am just so upset because I thought that 120mg Lasix twice a day would keep her stable for a few months, but it is pretty clear that she is just getting worse and worse. I don't know what to do and there really isn't anything to do except pray and try to enjoy her good days. She is so frail and weak, it breaks my heart. To top things off, my dad has been in the hospital since Thursday night. He is in the psych ward with severe depression. I slept over with my mom on Saturday night and she was up all night, so now I see what my dad has been living with. The poor man is sleep deprived, and probably hasn't had a good night's sleep in over a year. I have hired someone to be with my mom in the day and night but she wants my father back.
I am so upset, sometimes I wake up in the middle of the night in a panic that my father isn't at home with my mom. This is so horrible but all I keep thinking is that G_d doesn't give me more than I can handle. He is giving me the strength to do all that I have to do for my parents as well as continue to work. If anyone has gone through this kind of stuff and wouldn't mind sharing their experience with me, I would appreciate it.
On another note, Greg - who got his heart transplant about 2 weeks ago - is doing really well. He is staying at a nice hotel where the hospital leases rooms so he can go back and forth for his biopsies. I wish everyone out there health and strength to do the best with whatever situation you are dealing with. All the best, Sherry. firstname.lastname@example.org
Kathryn C's July 13 reply to Sherry's July 11, 2000 - Hi Sherry, I have a 26 year old son with heart failure. Last August he spent 10 days in CCU on IVs and a catheter in his heart and we almost lost him twice. Now he is doing well on medications. The stress has been incredible but not more than I can deal with. We do what we can out of love for others.
Closer to your situation, about 5 years ago I was the primary caregiver for my aunt who was terminally ill with end stage cancer. I can hear in your voice the same strain I felt going through that difficult time. It takes all your strength and willpower to be present for your dearly loved mother. The best advice I can give you is to take very very good care of yourself. This means rest when you can, eat nutritious food, take your vitamins and pray every day. God will answer you and guide you through. What a wonderful opportunity we are given when we have the chance to show our loved ones in a tangible way how much we care for them. My thoughts and prayers are with you and your family. Kathryn. Kathryncole@hotmail.com
Sherry, July 14, 2000 - Hi everyone, Thank you Kathryn for your words of inspiration. Things are pretty much the same: Mom is still at home trying to get better and dad is still in the psychiatric area of the hospital also trying to get better. He is still pretty depressed but they said they will let us take him out to lunch in the hospital cafeteria over the weekend, so if my mother is up to it I will bring her there so they can see each other. I think they need to see each other. I am doing okay. Yesterday was a hard day for me emotionally so I worked until 5:30 and then went home and took care of myself. I fell asleep early and slept like a log.
You are right, I do need to take care of myself very much now so I can be there for the people who need me the most. Yesterday I found myself thinking a lot about how it will feel when I lose her and then I kept praying to let that go for now and concentrate on the present. I know G_d will will give me the strength to do what I have to do now. I am so gratelful to have this forum to write and correspond with people who really understand. I hope your son is doing well Kathryn, and thank you so much for writing. I hope everyone that I have been reading about is doing well today, and thank you Jon for all that you have done. All the best, Sherry. email@example.com
Dega, July 17, 2000 - Hi Jon, I just wanted to thank you for all your responses. I know how busy you are but I'm sure no one realizes just how busy, right? I wanted to check in and tell how my husband is progressing. He has been on Coreg now for 2 months. He is up to 6mg in the morning and 10mg at night. For the last 2 nights he has complained about numbness all up and down his left side and right-sided pain in his head. Whats that? For 4 nights he can't breathe well and he also had very deep pain in his chest 2 nights ago. He is very very discouraged. That's about it for now. If anyone has any input, please reply. I forgot to mention that when he has pains in his chest, he feels like he is being choked - like a paralyzed feeling in his throat. Thanks again. firstname.lastname@example.org
Jon's July 17 reply to Dega's July 17, 2000 - Hi Dega, This sounds something like angioedema but that is usually associated with ACE inhibitors rather than beta-blockers. It can cause the throat, face or tongue to swell and can be very serious. I would definitely press his doctor for answers on this. While many people have perservered through Coreg startup, others simply never adjust and have to discontinue the drug. If your husband is one of these people, rest assured that it is not the end of the world. A properly high dose of ACE inhibitor plus Aldactone and other meds can work to excellent effect for him. However, stopping a beta-blocker too quickly can be extremely dangerous for people with ischemic heart disease (resulting form heart attacks, etc,...) so work through this with your doctors. Jon.
Judy H, July 19, 2000 - Hi everyone, I have a few questions, if anyone can help. My husband (he has DCM, CHF, and an ICD) has had SOB the past week or so. He'll have a bad spell especially at night, but then it will ease up on him. He has no problem when he's walking or being active. He called the cardiologist this morning, who didn't seem overly concerned, and will be seeing him tomorrow. He doesn't have any ankle swelling so he hasn't really taken much Lasix, maybe 20-40mg on a bad day. He doesn't take it on a regular basis. I guess we'll find out in the morning what's going on. Any thoughts on this, anyone? I'm thinking he needs to be taking the diuretics more regularly. Is this a sign that his heart is getting worse? He's extremely careful with his sodium intake. I'll be posting some other concerns separately so as not to make any one post too long. email@example.com
Judy H, July 19, 2000 - Hi again, First of all, I want to thank you, Jon. You are wonderful for having this site! God bless you, I mean it sincerely. I wish my boss was as understanding! He is not happy when I have to take off a few hours a few times a month (I use my vacation and personal time) to take my husband to the doctor's or to the support group or wherever (my husband can't drive currently). I guess if my husband's not in the hospital, my boss views it as not really being too serious! Maybe I'm just paranoid but if there's a choice to be made between sick husband and my job, well, that's a no-brainer! The company I work for does offer some flexibility in these matters. I am able to go home for lunch each day but I definitely sensed some negativity today.
On to another subject: Heart failure specialists. I asked the nurses at the CHF clinic at a local hospital if there are any CHF specialists in this town and they said there were none. I called Cleveland Clinic today and my husband now has an appointment next week with a CHF/transplant specialist. We're about 90 miles away from Cleveland Clinic. I'm not sure what to expect but we'll have plenty of questions. Again, I would appreciate hearing from anyone who has been there or has any other helpful comments.
The last thing is, what do you all do for dealing with the stress of having a loved one who is so ill? I have started working out at 6:00 AM in the morning before work, so I don't take any more time away from my family. That has helped me somwhat. I also get a lot of joy from gardening but sometimes I feel like I am in a bad dream that I can't wake up from. I don't want my husband to die! I'm stronger now than I was even a year ago and I try to remain hopeful. It's just not always easy. Thank you for listening. firstname.lastname@example.org
Kathryn's July 19 reply to Judy H's July 19, 2000 - Hello Judy, I hear in your post the same tension and grief I have experienced over the past year since my son was diagnosed. CHF is very difficult for the primary caregiver, which you are. CHF is every bit as stressful as any other serious "chronic" illness and sometimes worse for us caregivers because people don't carry a sign on their back that says, "Big Heart Inside" or "CHF patient" so there is no public declaration of illness. My son is still embarassed when I carry the groceries or move something heavy where someone else can see him standing by watching.
I felt so lost and alone when my son first came home from the hospital. Nothing prepares you for that kind of stress. I used up all my vacation and some of my sick time. It took about 3 months before I got to the point where I felt comfortable even going for a walk or doing something out of shouting distance from my son. Somehow we find the strength to keep it together and go forward.
My advice to you is to keep praying and take your vitamins. I highly recommend St. John's wort as a herbal supplement for depression. You may not feel depressed but St. John's wort helps even out the peaks and valleys. Also, the physical activity is important. Take a rest when you can. If you can get a quick nap in while your husband is resting, do it! If you have someone you can talk to and confide in, that can also help. I see a therapist every 2 weeks. I take yoga and I walk for aerobic exercise. Remember that you must be taking every bit as good care of yourself so that you don't run out of gas in the long haul. You must be present and healthy to be present for your husband and family.
I pray (a whole lot) and I continually ask God for the wisdom to handle this all. God always answers you when you ask for help. It may not always be what you want or expect but you always get an answer. God bless, Kathryn. Kathryncole@hotmail.com
Todd Koenig, July 19, 2000 - Hi, My Father has been having trouble sleeping the past 2 weeks and told me he took 2 Excedrin PMs to help him sleep. I told him to ask his doctor before he takes a sleep aid. Should he be taking sleeping aids like this? He has had CHF for over 5 years. Thank you. email@example.com
Jon's July 19 reply to Todd Koenig's July 19, 2000 - Hi Todd, Tylenol PM has the exact same ingredient in the same dose as a standard Benadryl (antihistamine). He does need to ask his doctor but "in general" they are okay to take once in awhile. Jon.
Bill D's July 19 reply to Judy H's July 19, 2000 - Hi Judy, Just because his ankles and legs don't swell up, he may be holding water around his lungs. Don't cut down on his Lasix. He does take slow release potassium too, I hope. Does he weigh himself in his birthday suit every morning before his breakfast? That's the best way to find if he's holding water. I weigh 195 and If I gain 2 pounds, I know I have to take another half-pill of Lasix. Bill. firstname.lastname@example.org
Cheryl Thorne, July 20, 2000 - Hi everyone, This is just an update on Jim. We saw the surgeon today. He will have aortic valve replacement within 30 days at Ochsner Hospital in New Orleans. Please pray for the doctor, Jim, and our family. The doctor really didn't give him any choice and said he'd be dead within a couple of years without the surgery. He can't predict whether the surgery will improve the CHF or not but we might as well hope, right? ;-) The doctor is concerned because one part of Jim's heart appears to be more damaged than the other three. He wants to study his other test results some more. Thanks for this site; It has helped so much. For now, he's still on Coreg and it's still making him sleepy and dizzy. email@example.com
Helena, July 20, 2000 - Hi everyone, It has been awhile since I wrote. My father is 68 and this site has been very useful to us in many ways. He just got an angiogram today. They found one artery blocked 100% and two others 90% blocked. He also has emphysema with a breathing capacity of one lung, diabetes, CHF, a pacemaker, has oxygen 24 hours a day, is overweight and has psoriasis. The surgeon told me he doesn't have much of a chance to live if he were to get bypass surgery. He said it may be possible for him to have angioplasty. I will be speaking to the doctor about this tomorrow. My father wanted to know if there is any drug that can be taken to help him. We are also interested in any other advice. The surgeon recommended a blood thinner. Meanwhile, his blood is already very thin and he has clotting difficulty. Thank you again. Any information would be welcome. Helena. AmberHPS@aol.com
Jeanette W's July 20 reply to Clara's July 5 July 20, 2000 - Hi Clara, I am on 3 of the saame meds your husband is on. I have DCM and take 40mg Lasix, 6.25mg Coreg twice a day, and 20mg Zestril at night. I have been on them for over 2 years, since my stay in the hospital when I first was diagnosed with DCM. I have been very stable on these drugs and my health has been good. There are some side effects but they are too minor to mention. You will get tired more but you get used to that. Just pace yourself and when you get tired, rest. Your body is telling you that you have done enough for right now. I am very pleased with the results of these drugs. I went into the ER two years ago not being able to breathe or sleep. They diagnosed me and immediately put me on these drugs and within 3 days I felt normal again. I had a new lease on life. Your husband needs to give them a chance to work and maybe even your doctor might have to adjust them, but if it weren't for these meds I wouldn't be answering your questions here now. I will be praying for you and your husband. Please let me know how he does. Good luck and God bless, Jeanette W. firstname.lastname@example.org
John S, July 20, 2000 - Hi, I just found this gem of a site via Dr. Marc Silver's book. I just discovered that my father (retired oral surgeon, age 65) has CHF after talking with my mom. She claims she knows what is wrong with my father but he has not shared such information, which he has probably received from his doc. He displays all the classic symptoms, which have been quite obvious only within the past 6 months. My dilemma is, what kind of support could I give my father at this early stage of our awareness. I'm sure this is not an early stage of his underlying heart disease, since we have known about his a-fib for years, for which he does take medication. Also, would it do any good to discuss any of this with his doc, or start discussing CHF with him as I begin my quest to learn about it? I would be very excited to hear back from anyone. Thank you, John S. email@example.com
Mary B, July 20, 2000 - Hi, My father is 77 years old and has CHF. He is very weak and tired since April, when he had a defibrillator put in. He has a terrible time going to sleep at night and cannot lay on his side due to the defibrillator. His cardiologist prescribed Zoloft. Dad takes it but I don't think he has been on it long enough to see results. My Mom is at her wit's end. She is up with him day and night and has been giving him Tylenol PM at night. Some nights it works and some it does not. He tried Benadryl the other night and he was up all night. Any advice? Thanks, Mary. firstname.lastname@example.org
Jon's July 20 reply to Mary B's July 20, 2000 - Hi Mary, About Tylenol PM & Benadryl, please read this post. Jon.
Jon, July 20, 2000 - Hi everyone, Two things: First, I have a new e-mail address, which is email@example.com. Second, to Mary, please send me your e-mail address so I can put your post up. Thanks. Jon.
Andrea, July 21, 2000 - Hi, This is my first visit to this site. My 83 year old grandfather was diagnosed with CHF about a year ago. In the past year, both his physical and mental health have rapidly declined to the point that he is not even the same person anymore. He had a pacemaker put in last winter and everyone hoped that would help, but it hasn't. He's had bad reactions to medications (beta-blockers and antidepressants) and his cardiologist is at his wit's end.
My grandmother is caring for him at home. She is diabetic and also a heart attack survivor. In the past year, she's lost at least 30lbs. My mom (their only child) lives out of state and is doing everything she can from that distance to help, but my grandmother doesn't always tell her everything that's going on. My grandmother doesn't want to worry my mom, but she'll tell me about the bad days. Even though I only live an hour away, I don't know what to do to help. My grandparents are the most precious people in the world to me and I can't help them.
The most difficult part of this disease is seeing my grandfather lose his mental capacity. He is an intelligent, creative, giving human being and now he is confused and disoriented much of the time. The worst part is how he is treating my grandmother now. He's very verbally hateful to her. Several of her friends who have gone through this with spouses tell her to let everything he says slide off her back because it's not really him talking but how much hostility can she take from someone who's been her companion for over 55 years? The other day, he fell outside and after she helped him get up, he told her he should have hit her with a stick! My sister, mom, and I are afraid that he will hurt her and not even know what he's doing.
My mom is coming this weekend to visit and access the situation. Both my grandmother and mom have agreed it's time to make a decision about getting some professional care (a nursing home). I guess my only question is, "Is this mental decline normal? Should he see a gerontologist in addition to his cardiologist?" I know memory loss and confusion are symptoms because of the lack of oxygen, but he's out of it much of the time. At times he doesn't seem to comprehend his physical limitations and thinks he can be out in his workshop with a power drill trying to make a bird house. He got mad at my grandma the other day because she took the car for an oil change and he thought he could have done that. He hasn't driven for over 6 months. He can barely walk!
Sorry this is so long, but it feels really good to "talk" about this! firstname.lastname@example.org
Ann Marie K, July 22, 2000 - Dear Jon, My Mom's 16 month end stage CHF is over. She is at peace and entered into heaven Monday. Mom was 86. She gave CHF a brave 6-week fight and finally decided that she wanted to go "home." I am so grateful that I found this site last April. It is a wonderful community of people helping people. Her passing was the most peaceful thing I have ever witnessed and hospice got her home for me 5 hours before this happened. We were together for my first breath and together for her last. I am truly blessed.God bless to all, Ann Marie. Metaphlady@aol.com
Jon's July 22 reply to Ann Marie K's July 22, 2000 - Hi Ann Marie, My sincere condolences. Please never hesitate to stop by and chat awhile. Jon.
Helena, July 23, 2000 - Hi all, This question hopefully will be easier than my last one dated July 20th. My father may be getting angioplasty soon. However, his doctor prescribed the medication Diltiazem CD (long action) for him. He read that it goes badly with Coreg and a weak heart, both of which he has. Do people take this medication even with this warning? If you know anything about this, please let me know. Thank you, Helena. AmberHPS@aol.com
Jon's July 23 reply to Helena's July 23, 2000 - Hi Helena, Regarding your July 20 post, I'm not sure what you're after. His situation is quite serious and complex. An inotrope might help his heart beat more strongly but with so much blockage, I don't know if that's a good idea. Also, I don't know anything about the relationship between a paced heart and inotropic drugs. Coreg is likely to raise his blood sugars. I would actually say that a good collection of nutrients like that found in MyoVive would be a good idea and maybe even some extra CoQ10 and magnesium on top of that.
Calcium channel blockers like Cardizem are not generally given to CHFers due to increased mortality. However, a small subgroup of CHFers will do well on this type drug. Usually amlodipine is the calcium channel blocker of choice for anyone with CHF just because it has neither good nor bad effects on mortality in CHFers in general. In your dad's case, relieving symptoms and preparing him for a possible angioplasty now may be more important than worrying about a mortality benefit or risk that is on down the road. Just don't forget that second and third opinions are normal in serious cases like his, so feel free to seek them. Jon
Susan, July 23, 2000 - Hi, I am fairly conversant about CHF as my Mother had it. Unfortunately, my mother-in-law was also recently diagnosed with CHF. Since I have been through all of this before, my sisters-in-law are asking me many questions. According to my sister-in-law, my mother-in-law's doctor wants her on a high protein diet. He states that a high protein diet will help "absorb some of the excess water" and alleviate some of the water retention problem. However, he has appeareantly also mentioned that she may have some renal failure. I am a bit confused here. Has anyone ever heard that a high protein diet will help with water retention? Isn't a high protein diet a problem if there is some kidney failure? Susan Y. SFYCats@aol.com
Jon's July 23 reply to Susan's July 23, 2000 - Hi Susan, I've never heard of anything even remotely similar. The only diet that reduces fluid retention is a low-sodium diet! Jon.
Susan's July 24 reply to Jon's July 23, 2000 - Hi Jon, I have never heard anything about this before either. My mom had CHF problems for nearly 10 years amp; she had very competent cardiologists attending to her until her death this past September. So when my mother-in-law's doctor started talking about the fact that a high protein diet would solve her water retention problem, I became confused. I am highly frustrated over my mother-in-law's care. She is refusing to be hospitalized - which in view of high medical costs may be ok - but by refusing the time in the hospital she is not having access to aditional health professionals. She is currently being attended to by a DO rather than a MD and he has stated that she does not need to see a cardiologist at this time. I am not pleased with her medical treatment but then I am only the daughter-in-law so I of course tread lightly so as not to step on toes. So before I get highly adamant that she needs additional opinions - which I have requested many times over the last 6 weeks - I wanted to know if any other individuals had heard that a high protein diet would help with the water retention problem. Thank you, Susan. SFYCats@aol.com
Jon's July 24 reply to Susan's July 24, 2000 - Hi Susan, You might want to print out some of the studies on the CHF specialist FAQ page. Although they have been rewritten in plain English, the originals are available at PubMed (Medline) through the information at the end of each one. They prove beyond any doubt that every CHFer needs to see a CHF specialist, or at the very least, a cardiologist. No competent MD or even DO would argue with "facts" such as those presented on that page. If he blows them off, it's a convincing argument that he is not up to speed on current CHF care. Jon.
Sherry, July 25, 2000 - Hello Jon, Kathryn, and everyone else, I haven't written in awhile because I have been keeping sporadic hours at work. My father is home now after spending 2 weeks at a psychiatric hospital. He is on Effexor now and sleeps all the time. Mom, who has been in end-stage CHF for several years already, has definitely gotten worse lately. To top things off, she fell alseep on the toilet, hit her head on the sink and then fell to the floor. The home attendent was in the kitchen and I don't really blame her for the fall although she should have been watching her more closely. Because of the Coumadin, which has since been stopped for a week, her face is so purple and swollen I have never seen anything like it before. My father immediately started crying the minute he came home from the hospital. My heart is breaking more and more every day for them and all their pain and suffering.
My mother gets pain in her heart which the doctor says he cannot do anything about. She just started trying Tylenol #3 with codeine but it doesn't do much. She doesn't have fluid buildup right now but she cannot sleep at night. A Tylenol #3 plus 5mg ambien doesn't do anything. If anyone can suggest a "cocktail" of meds that will help an end-stage CHFer sleep, it would greatly be appreciated. Also, the dotor said that she could try two Tylenol #3s at one time. I think the next thing he will try is Percocet but not for awhile. I have been having a hard time of it lately. I cry a lot. I try very hard to stay in the day and to remember that G_d will do the best for my mom. It is so incredibly hard to watch her suffer. Anyway, thanks for letting me share how I feel and I wish everyone the best, Sherry. email@example.com
Jon's note: Strongly suggest morphine to her doctor for the sleep/pain problem at night. At this point, the fact that it is addictive is irrelevant. It is a venodilator so it may ease her chest pain in multiple ways. Hydrocodone - as in Percocet and Vicodin - keeps some people awake!
Steve, July 26, 2000 - Hi, My grandmother is 88 and went to the hospital with wheezing and general weakness. They found her heart rate was high and she also diagnosed with congestive heart failure. What should we expect in the near and distant future? My past experience with a family member of that age was that they died about 6 weeks after congestive heart failure was diagnosed. Should I expect the same? I want to prepare myself to look at this realistically. SteveS@SolanoCoe.k12.ca.us
Jon's July 26 reply to Steve's July 26, 2000 - Hi Steve, Have you read The Manual yet? Jon.
Monica F, July 27, 2000 - Hi, I'm so glad I found this site. It's wonderfully informative and from what I've seen, a great support to the families and friends of CHF patients. Thank you, Jon! My father-in-law was recently (2 weeks ago) admitted to the hospital and diagnosed with CHF. He is a very private man and his children are finding it difficult to get much info from him. I have suggested that they contact his cardiologist and GP and find out whatever information they can give out without dad's permission. He changed GPs a couple of months ago so they don't know each other very well yet. Hopefully this will help with everyone's worries and questions. My question is, "Should he continue living alone?" As I mentioned, he is extremely private and when he was discharged from the hospital 2 days ago he insisted that he did not need anyone to move in with him. Any suggestions? Thanks! firstname.lastname@example.org
Paul B's July 27 reply to Susan's July 24, 2000 - Hi Susan, While my dad was going through CHF, his physician's assistant recommended a high protein diet, claiming that protein was a natural diuretic. I hope that helps. email@example.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.