Connie 2-3 numbness, seek CHF doc in Richmond, Virginia
Jean 2-3 seek ICD/Hospice issue experiences
Vonda 2-5 is my mom really in end-stage CHF? & more
Donna's 2-5 reply to Vonda's 2-5 end-stage CHF, questions
Jean's 2-5 reply to Vonda's 2-5 coping with end-stage CHF
Lisa Z 2-5 seek the experience of others
Donna H 2-10 what can I do now?
Susan B's 2-10 reply to Vonda's 2-5 information is king
Diana 2-11 really need info on end-stage CHF care
Jean's 2-11 reply to Diana's 2-11 hospice care
Diana's 2-12 reply to Jean's 2-11 this is so hard
Susan B's 2-13 reply to Diana's 2-12 being prepared
Tom Towles 2-13 opportunity
Phyllis E 2-13 question about a-fib and flutter
Natalie K 2-14 a way to give to charities
Annie G 2-15 living wills and an alternative
Diana 2-15 update on my husband
Susan B 2-16 husbands!
Donna H's 2-18 reply to Susan B's 2-16 husbands & more
Sherlene Husfeld's 2-19 reply to Vonda's 2-5 parent's CHF experience
Rosemarie 2-19 what about passing out when coughing?
Annie G's 2-20 reply to Rosemarie's 2-19 this could be serious
Diana 2-21 weird diuretic Rx - what do you think?
Joyce 2-21 seek ICD experiences
Lisa Z's 2-21 reply to Joyce's 2-21 ICD experience
Joyce's 2-22 reply to Lisa Z's 2-21 thanks and more
Davida's 2-22 reply to Connie's 2-3 doctor suggestion
Davida's 2-22 reply to Donna H's 2-5 talking to the doctor
Davida's 2-22 reply to Rosemarie's 2-19 this may be serious
Davida's 2-22 reply to Susan B's 2-16 this may be serious
George 2-22 make sure your doctor is on staff at right hospitals
Rosemarie 2-22 seek cough/meds experiences
Lee's 2-24 reply to George's 2-22 preventing hospital confusion
Laura 2-24 seek sleep apnea info
Davida's 2-24 reply to George's 2-22 preventing hospital confusion
Susan B 2-24 thanks to all
Mel G's 2-25 reply to Joyce's 2-21 ICD experience
Carla 2-26 seek resychronization pacer experience
Katherine H's 2-26 reply to Joyce's 2-21 pacemaker resource
Judy H 2-26 prayer request
Donna H 2-27 sharing some good news & more
Connie, February 3, 2003 - Hi, I am looking for a CHF specialist for my mother in Richmond, Virginia. Her left hand and arm are extremely swollen. She describes feeling like her hand is "frozen", as in frostbitten. She has no real bad pain but no use in that hand. The fingers on her right hand are now getting the same numbing feeling. She has very little strength in her right hand. email@example.com
Jon's note: Also get her to an internist. This could be from many possible causes, some potentially serious
Jean, February 3, 2003 - Hi, My dad has been in CHF for years. He has had 2 pig valve replacements and currently has a unit that is a pacemaker and defibrillator all in one. Two weeks ago, dad was in the hospital because he was having difficulty breathing and had a lot of excess fluid. They drained about 3 liters of him in 2 days. His condition has been worsening over the last few months. His doctors have classified him as end-stage CHF and suggested we get in touch with Hospice, which we did. We have heard wonderful thing about hospice and were anxious to get started.
There is a problem: Hospice wants a DNR form filled out, which is not a problem. Once they learned that he had a difibrillator in his pacemaker unit, they said they could not proceed until Dad agreed to have it turned off. We are now consulting with his cardiologist and PCP to see what we should do. Has anyone else had a similar situation? firstname.lastname@example.org
Vonda, February 5, 2003 - Hi, I am so very confused. I read this site all the time just to try to gain information from each one of you. My Mom is 57 years old. She has CHF but to look at her, most of the time she looks very well. You would never know that she is as sick as she is. Her CHF specialist has told me that she is in her last stage.
I just read Jean's message about hospice and I don't understand. We have never been advised to reach hospice. My mom takes care of herself. I do her major housecleaning but for the rest of it, she does. She even helps watch my kids while I work and she is sure to make us home-cooked meals. She also has a defibrillator. We had to go through the DNR order in the hospital in May of 2002 but nothing has been said about it since.
I know that God only knows when we are going to die but if my Mom looks good and seems well, is she really in the last stage of CHF? Also, her CHF specialist has mentioned to us several times about a biventricular pacemaker. Thanks to all of you who share your experiences and my prayers are with you that have lost your loved one. Vonda. email@example.com
Donna H's February 5 reply to Vonda's February 5, 2003 - Hi, I understand what you are saying, Vonda. The last time we saw anything about heart classes, my husband was classed as 3B. The cardiologist now tells us he needs on a heart transplant list and that he probably won't survive until a heart is available. Yet every day he comes to my office and helps me, he drives himself to the doctor and he cooks dinner most evenings.
Right now he has a bad cold and is wheezing a little. We went to the doctor on Monday and she prescribed prednisone, an inhaler, and a strong antibiotic; He is feeling much better. Today the hospital called to set up another sleep apnea test and were so concerned with the way he sounded that they are going to confer with the local doctor and cardiologist and call us back.
I don't know what questions to ask the doctor and don't know how much to say in front of my husband. What I would like to know is, just what should I expect? With end-stage heart disease, is the greatest danger a sudden death or a long illness and death? Like you Vonda, I wonder what end-stage means? Does end-stage indicate months or can a person survive in end-stage heart disease for years?
How do you ask these kind of questions in front of the ill person? I want to help my husband live as long as possible; I even want him to try for a transplant and I need some answers to help him have the best quality of life possible. Since he is only 52, I am hoping that he lives for many years but the doctors don't seem that hopeful. Yet at the same time, I have no idea what to expect.
As a general rule, I try to stay upbeat and take each day as it comes, but living with such uncertainty is difficult for me and I know it must be even more so for my husband. Do any of you ever talk to the doctors without the ill person being present? If so, how do you manage that? Can you get any answers from the doctor? firstname.lastname@example.org
Jean's February 5 reply to Vonda's February 5, 2003 - Hi Vonda, I should tell you that most days, my dad is totally functioning, like your mom, although he doesn't have the strength or endurance to do much phyisical activity. We were just at his PCP's yesterday to ask his opinion on turning off the defibrillator. He said that at this point in the game there is very little risk in turning it off because the heart is too sick to respond to the shock.
I must also tell you that we kids were the ones who questioned the doctors about hospice. I thought hospice was only for cancer patients. It's true that only God knows the appointed day and time to call each of us home, which makes it difficult to predict when to get hospice involved, especially when most days he looks pretty good.
Yesterday the doctor told us that my dad's kidneys shutting down seems to be more of an issue than fluid in his lungs. I have learned so much from others on this site. I thank God for Jon and his ministry here! We will be contacting Dad's cardiologist in the next few days to make an appointment to have the defibrillator turned off. By the way, my dad is 83 and has had a wonderful life. Our family has been blessed to have him with us as long as we have! Jean. email@example.com
Lisa Z, February 5, 2003 - Hello everyone, I am a regular here but haven't posted for awhile. My father is the one I am writing about. A synopsis of his story goes as follows: dilated cardiomyopathy, CHF, type II diabetes, prone to kidney stones and bladder infections, enlarged prostate, and a small hemorrhagic stroke on the right side of his brain this past September.
In January of 2001, he was in Club Med and was unable to void due to a bladder infection, went into flash pulmonary edema and ended up in cardiac arrest twice. He had a defibrillator implanted at that time and fortunately it has never fired. However, when it was implanted it had to be set at the highest joules because they had a hard time getting it set.
Since his stroke in September, he has been off his blood thinner completely because the stroke involved bleeding, until he received a clear CAT scan. Just last week we finally got the clear CAT scan so his neurologist put him on Plavix. We are blessed and so very lucky that number one, he is still with us and number two, he has not suffered another stroke.
Here is the latest dilemma. Because he has an enlarged prostate, he keeps getting these horrible infections that in turn send his sugar up, which affects his heart, etc,..., the old domino effect. So he is scheduled for a TURP - a procedure to "shave" down the prostate gland and permit the bladder to empty properly. He has to be under general anesthesia to have this done and it is scheduled for February 17th, which means a technician has to deactivate the defibrillator and then reactivate it. His cardiologist is wonderful and will also be present for the entire surgery. He will spend at least one night in the hospital. He has clearance to have this done from his PCP, urologist, neurologist, and cardiologist.
Needless to say, with the myriad of problems he has had in the past 3 years, I am petrified. He is only 73. I know he needs to have it done but I am wondering if anyone out there has any experience with this type of thing or could comment at all? My fears are regarding the deactivation of the defibrillator, blood clotting or a stroke, being under anesthesia (which he hasn't been since January of 2001) or of course the very worst thing - losing him. I realize I cannot control these things but I still want to be as educated as I can.
I am an only child and very, very close to my daddy. I worry too much, baby him too much, and love him more than I could ever say. I would appreciate any information, suggestions, or sharing of your experiences. Thank you and God bless all of you. I realize that each of us has our daily challenges in living with these diseases or supporting those that do have them. As always, a special thank you to Jon for all that you do. firstname.lastname@example.org
Donna H, February 10, 2003 - Hi, After juggling Medicare, Medicaid, the county health office,the VA, and coordinating everything with 3 doctors, I finally thought we were getting my husband health care that might make a difference. His new cardiologist wants to take a more aggressive approach. When the nurse called to make arrangements for a chemical cardioversion followed by an electro-cardioversion if needed, I set up the schedule, only to find that my husband doesn't want to do any of it!
He thinks we are pushing him into procedures that are dangerous and that given time, his heart will heal with acupuncture and Chinese herbs. When I called to cancel the appointments, the nurse told me that his heart function has deteriorated in the last 2 years from an EF of 50% to 30% with a low of 20% just before his pacemaker insertion. I know that he feels bad most days. He is tired and usually just goes from bed to a chair, then dozes off again.
My question for anyone that chooses to answer is: What do I do now? Do I completely back off? I don't want to make him do anything he doesn't want to do but at the same time it is painful and frustrating to watch him suffer. I have done a great deal of research, both online and through phone calls. The procedures they are suggesting aren't unusual. In fact, in most cases of a-fib, cardoversion would have been tried in the beginning.
He refuses to even talk about being placed on a transplant list because he thinks that would only lead to more pain and suffering. At this point he seems to be wavering between feeling that he is doomed and that his alternative treatments will cure him. He is too young at 52 to just give up but I think that is what he is doing.
His acupuncture does help with his stress so I don't want him to stop it but I don't think it can cure him. I also worry that the cardiologist will get fed up with the situation and decide not to take him as a patient. I am very upset about this. email@example.com
Susan B's February 10 reply to Vonda's February 5, 2003 - Hi Vonda, It seems like you need more information from your mother's doctor(s). CHF is tricky. My husband rarely looks ill, but he is, and I know from talking to others here that many people with CHF are walking around and living their lives without looking sick.
However, your mother's CHF doctor is basing his statements on test results. Do you know exactly what those tests results were, and what they mean? Do you know the treatment plan for your mother? Does your mother know the treatment plan? Asking questions is so important to getting the right treatment plan, so you are off to a good start. I'm sorry I don't have any helpful information other than to tell you to go ask more questions. Our prayers are with you and your mother.
I have been reading things on Jon's pages (old and new) for the last 2o years and I still am trying to take it all in. The amount of information that you need to know is overwhelming at first. Thanks again Jon, for all your hard work. Susan B. firstname.lastname@example.org
Diana, February 11, 2003 - Hi, Well, my husband is back in the hospital and the doctor has now recommended hospice. He says there is just nothing more they can do for him. My husband is 86 on Friday, with CHF and COPD. The doctor put him on several drops of morphine and increased his Betapace.
Please, can someone tell me what to expect now? The hospice people were supposed to come in today to discuss this with us, but they were a no-show even though I was at the hospital all day long. I am worried and upset. I would appreciate responses from anyone who has gone through the end stages with hospice. Thank you, Diana S. email@example.com
Jean's February 11 reply to Diana's February 11, 2003 - Hi Diana, I'm not sure what state or area you live in but I'll tell you that our experience with hospice so far has been nothing short of amazing! I'm sorry that your first impressions have not been favorable. I live in northern California and we have "Hospice of the Valley" for my dad, who is 83.
There was an initial snafu in getting him on hospice because he has a defibrillator. He made the decision to have that turned off last Thursday and have had physical visits by 3 different hospice nurses in less than one week. In fact yesterday, a nurse stopped by just to see how Dad was feeling emotionally because she knew that it was a big decision to turn off the defibrillator.
It sounds like your husband may be a little further along than my dad, since he's already had morphine administered. One of the visiting nurses came out and looked at all his meds and ordered any that he was low on. What a blessing, since that is all covered under the hospice benefit. In fact, the pharmacy even delivered everything the same day.
I hope that you are able to switch agencies if there is another one in your area. From what we've already experienced, hospice is all about keeping the patient comfortable and helping the family cope with everything too. It doesn't sound like that is happening for you yet. I pray that you'll get the attention both your husband and you need very soon. Hang in there, Jean. firstname.lastname@example.org
Diana's February 12 reply to Jean's February 11, 2003 - Hi, Well, I think the no-show was due to the hospital and doctor misunderstanding. Hospice called after being notified by social services at the hospital yesterday, and made an appointment for this morning. The lady was nice and tried to explain what we needed to know but got on my husband's bad side by saying he had to make a decision about a Living Will and so on right now. He didn't take very kindly to that since he wants things explained and then wants to think about the decision.
I don't know what to do and don't think he does either. I'm going to call in the morning and ask a few more questions and see what happens from there. I feel that by having hospice, that's sort of like giving up on his life; he has 6 months and that's it. I can't explain it any better than that since I'm pretty emotional over it all. I hate decisions like this and would rather put my head in the sand and pray it all goes away.
I don't want to lose my husband. He's been my best friend for the past 26 years and has always been there for me. I feel like I'm letting him down by not being able to do anything for him. I'm sorry, I'm sitting here crying and not making any sense. Thanks to all those who do understand, though. Diana. email@example.com
Susan B's February 13 reply to Diana's February 12, 2003 - Dear Diana, Please consider reading "How to Survive Your Spouse's Chonic Illness." It has helped me a lot. I think that it would help you too. It is important to make plans before you are too ill to decide. That is the only fair thing to do for your family and friends. Life is unpredictable and everyone needs to have their plans spelled out.
My grandfather just had a major heart attack, out of state. My father and my aunt are trying to see what should be done. My grandfather is out of it on morphine, without a living will and not doing well. My father does not know what tests the doctors have done and is not able to report. I have told him what to ask, but I may have to fax a letter to my dad so that we all can understand what is going on. I just got a call that my grandfather is better, but we are going to push him to plan.
We know nothing about my grandfather's wishes, except that he told us last summer that he has not made plans. My dad told me that when he gets back, he is getting everything in order so that we would not have to worry and wonder what to do, if or when he is ill.
The living will should not be looked at as giving up. I draft them all the time for my clients who are healthy and well. That is the time to make plans for when or if you get ill. Illness is enough to fight. Making plans for your illnesses and death should not been seen as giving up, so making a living will and making a will or trust should be done by every one in advance. Good luck, Susan. firstname.lastname@example.org
Tom Towles, February 13, 2003 - Hi, House Market Research in Rockville, Maryland is looking to interview individuals that care for a family member that has been diagnosed with heart failure. The interview will take place in Rockville, Maryland on Thursday, February 20, 2003. All participants will be paid $100 for one hour of their time and opinions. If you are interested and would like more information, please call me at 301-948-8800, extension 211. email@example.com
Phyllis E, February 13, 2003 - Hi, I have not posted for a few months since my husband was told he was well from CHF/cardiomopathy. He has been left with serious atrial fib and atrial flutter. He has had 4 cardioversions that put his heart back in rhythm only a few days. His heart beat sounds like a fluttering, flopping flounder. An ablation procedure is out of the question.
My question is: Does anyone know if this chronic a-fib/flutter can bring you back into CHF/cardiomopathy? He feels just as bad as if he has them back. They did an echo and we will know next week. He might be knocked off of disability without CHF. I think this problem is still a debilitating heart problem. Thanks, Phyllis E. firstname.lastname@example.org
Natalie K, February 14, 2003 - Hi, I want everyone to know about a site called www.iGive.com. I don't know if it's legitimate, but it seems to work. You use it as a gateway for online shopping so that your chosen charity can get a percentage of your purchase price from certain online merchants. I have registered chfpatients.com and used it with Amazon.com. I would welcome feedback if anyone finds more information about this or other sites that would help us help Jon. email@example.com
Annie G, February 15, 2003 - Hi, Regarding living wills, in Michigan where I work, living wills are not legally binding. I don't know if that's the best term but they are not required to be followed even though the paperwork is offered. What is accepted legally is a durable power of attorney for healthcare decisions. This lets you designate someone to make health decisions for you should you become too ill to speak for yourself. I think that is supperior to a living will because living wills can be open to interpretation. Depending on how aggressive your doctor is or how up he is on current treatments you may get different responses to the same situation.
The advantage of the durable power of attorney for healthcare decisions is twofold: You do not have to designate your closest relative; you designate whomever you think would best make the choices, the ones you would make for yourself if you were able. Also, it is often easier for family and friends to make decisions based on what you would want, not what they would want. They are able to make decisions based on the information offered.
For example, my father says "no life support" but he really means no long-term life support. He doesn't mean that if he got really bad pnuemonia he wouldn't want a ventilator but a living will could be strictly interpreted that way. With the DPAHC his decision maker could say that under the circumstances, a ventilator would be reasonible. I hope that this is clear.
I have actually seen it work. When people are asked "What would this person want, rather than what do you want to do?" they seem to be able to make more confident choices knowing they are not voicing their opinions, but their loved one's wishes. firstname.lastname@example.org
Diana, February 15, 2003 - Hi, I just wanted to update on my husband. I got the doctor to stop long enough to ask him some questions Thursday. He seems to think that since my husband is doing a little better, we don't really have to make a decision on hospice now. We know it's probably something we'll need in the future, maybe a week, maybe a month, who knows?
For now, we've decided to just keep on as we are, at least once we can get him home again. They can't get the fluid off his heart even after 2 weeks in the hospital. I know that's not a good sign but still we feel like we've made the right decision about hospice for now. I just couldn't get past their philosophy of not hastening death, but not doing anything to stop it either.
Anyway, I appreciate the responses I had. God bless all the caregivers here and their loved ones! Diana. email@example.com
Susan B, February 16, 2003 - Good Morning, My husband and I just spent most of last night at the emergency room trying to get his nose to stop bleeding. His protime was great, but his nose would not stop. Has anyone else had this problem? He was even bleeding from his tear ducts, which freaked us both out. He told me that he was glad that it was dark on the drive to the emergency room so that he did not know he was bleeding from his tear ducts; he just thought his eye was watering. I knew something was wrong because he was so quiet on the ride. He normally is joking and complaining that he really is not that ill and we should just wait for him to improve.
His nose has been bleeding a lot lately. Last Friday he called me at work to stay that he was in a little room by himself at his work and his nose had been bleeding for half an hour. He is working as a dispatcher for the fire department and could have had medical help but he called me! I work about 1/2 hour from his office. I would not get off the phone with him until he told, or I told, one of his coworkers. I don't know what I am going to do with him! Last night he did not want to call for help even after he could not stop the bleeding for over an hour! He just keeps saying that he is fine.
Thank you for letting me vent. You all are in my prayers. As always. thank you Jon for all you do. Susan B. firstname.lastname@example.org
Donna's February 18 reply to Susan B's February 16, 2003 - Hi Susan, I don't know why your husband is having trouble with nose bleeds but I would ask the doctor if this means you need to check for other internal bleeding. I understand about your husband not going to the doctor. Every time I have taken my husband to the emergency room, he says they will probably laugh at us and send us home. They never have and last time he was there for 12 days and came home with a pacemaker.
After the doctor suggested a heart transplant last month and my husband refused, we had a long talk and he told me that he just doesn't see CHF as a serious disease and he thinks he will be fine if he just takes his meds and doesn't do any surgeries. In fact, last week an acupuncturist told him that the reason he has trouble retaining fluid is because he isn't drinking enough. The doctor told him to limit his intake to a quart and a half per day. The acupuncturist wants him to drink a minimum of 64 oz per day, increase his salt intake and said then his fluid retention would go away. Thank goodness my husband decided to talk to his cardiologist next week instead of just doing what the acupuncturist said!
Do you know what the protime numbers were? How long has your husband been on Coumadin? Bleeding from the tear ducts would have had me scared to death! I hope you find some answers soon. Donna. email@example.com
Sherlene Husfeld's February 19 reply to Vonda's February 5, 2003 - Hi Vonda, My mother had CHF for over 10 years and remained very active until the last year of her life. She died at 97-1/2 years of age. The last year, she began retaining fluid and had some difficulty getting around, and she refused to take any medication. We gave her lots and lots of CoQ10, minerals and vitamins, and made her walk every day. I can sympathize with your feelings of not knowing what to do. All I can say is go with what makes your parent happy. Sherlene_Husfeld@pvamu.edu
Rosemarie, February 19, 2003 - Hi, Frank's ACE inhibitor has now been changed to Atacand (candesartan cilexetil). This was in an attempt to relieve him of the cough, which is a side effect of the Capoten that he was taking previously. The doctor said that it would take 2 weeks to have any effect and he has only been taking it for a week with no change so far.
What I'm wanting to check out though, is whether anyone out there has experienced blacking out for short spells during coughing spells. Frank has done it several times lately and today when I came home from work it was to find him with a huge black and purple eye caused when he slipped out of his chair and collided with the corner of an occasional table next to his chair. I notice that he has a tendency to fall to the left side.
Sometimes when he's having a fit of coughing in the night, he flops back on to the bed and doesn't seem conscious for a minute or so. I'd appreciate feedback if anyone has any! firstname.lastname@example.org
Annie G's February 20 reply to Rosemarie's February 19, 2003 - Hi Rosemarie, I would get my husband put on a 24 hour holter monitor right away, and keep him on it until they see what it is. I'd actually be happier, if it was my husband, that they kept him in the hospital until the cause was identified. I wonder if he is having some type of serious arrhythmia. I would also contact his CHF specialist right away because this sounds potentially serious.
In the meantime, check his pulse when he flops back on the bed and when he's coughing, if you are able. Do you need to take him to the ER after this happens? Is he his normal self? Does he have an automatic defibrillator (ICD)? Does he need one? I don't have any answers but I think you are right to be concerned. Good luck, Annie G. email@example.com
Diana, February 21, 2003 - Hi, My husband is now home from the hospital after 2-1/2 weeks there. The doctor said he is as "dry" as he's ever been. However, he put him on 800cc fluid restriction and took him off Demadex. He has already gained about a pound and a half in the 2 days since he's been home. In order to give him the Demadex again, we're supposed to call the doctor when he's gained 2 lbs overnight. The doctor told me this is straight from the medical books for how to manage end-stage CHF. Does this make any sense to you all?
I understand about restricting fluids, but not about leaving off fluid pills. My husband does seem to be feeling much better than he did before he went in the hospital. Of course, I'm just wondering how long it will last. This is the same man the doctor wanted us to consider hospice for just a week ago! firstname.lastname@example.org
Jon's note: This makes no sense to me at all
Joyce, February 21, 2003 - Hi all, My husband was seen at Johns Hopkins last week. I was very pleased with the care they gave him. He will have an ICD put in this Thursday. I would be interested in anyone who has had this done.
What can I expect as his caregiver? How will he feel afterward and how long will it take him to recover? He has COPD and cardiomyopathy with an EF of 10 to 15% and class 4 CHF. He is 69 years old. I am so grateful for this site. I read it every day and find such comfort in knowing you all are there and understand. I don't post often but thank you all for being there. Joyce. email@example.com
Lisa Z's February 21 reply to Joyce's February 21, 2003 - Hi Joyce, My dad had an ICD implanted on January 23, 2001. He was discharged from the hospital on January 26, 2001. We are very fortunate that his ICD has never fired since being implanted. We refer to it as "Fibby", his little guardian angel. I am so grateful for such wonderful technology.
My dad also has cardiomyopathy with an EF of about 15%. Just this week he underwent prostate surgery and it was the first time that they deactivated and reactivated Fibby, and he had no problems at all. When his was first implanted, he had some general soreness where it was implanted, around the incision; but compared to other surgeries, he said it was mild. I just followed the doctor's instructions and did a lot of reading and research on the web site from the defibrillator manufacturer. My dad's is made by Guidant. He had his put in at Allegheny General Hospital in Pittsburgh, PA.
Things to remember are that if it ever fires, he may lose consciousness or just feel as though he was kicked in the chest. You should call the electrophysiologist's office and let them know, or if necessary call 911 right away. My dad says he really doesn't even feel it there anymore. He holds his cell phone to the opposite ear. He also does not use any power tools or get too close to a running engine. Your hubby won't be able to go through any metal detectors at airports and some retail stores may beep if they are set too high. Those are just a few things I can think of now. Just read as much as you can about it and ask the docs lots of questions. Take care and I wish you and your hubby well.
PS. Did you know Vice President Dick Cheney has one? :-) firstname.lastname@example.org
Joyce's February 22 reply to Lisa Z's February 21, 2003 - Hi, Thanks for the helpful advice. I really appreciate you taking the time to answer. I love the name you gave his ICD that makes me look at this in a different light. I think a sense of humor is a wonderful thing to have in a scary time like this. I'm so glad your father is doing well and I wish you both all the best. Joyce. email@example.com
Davida's February 22 reply to Connie's February 3, 2003 - Hi Connie, I am sorry I did not see this post sooner. I am just swammped with a lot of projects. Take your mom to see Dr. Michael Hess at MCV Hospital. He can be reached at (804) 828-0951. He is an expert in his field and worked miracles with my husband. I wouldn't trade Dr. Hess for anything in the world. We shopped around and went to him for a second opinion. I am so glad we did. He is the lead Doctor in the Heart Failure and Transplant department there. Good luck. firstname.lastname@example.org
Davida's February 22 reply to Donna H's February 5, 2003 - Hi Donna, If you need your questions answered without your husband, get your questions together on a piece of paper and call the doctor; ask that he call you back at work and zero out of your mailbox if that is possible. I have talked to my husband's doctors quite often just like this. Remember that the doctor's time is limited and he may have to call you in the evening at home. Just try and move to another room if he calls you at home. You can leave the message to call you at work only. Take care. email@example.com
Davida's February 22 reply to Rosemarie's February 19, 2003 - Hi Rosemarie, Don't wait any longer! Monday morning call his heart doctor and tell him about all of the episodes and ask for the holter monitor. This is very serious. This could be abnormal heart rhythms that need to be treated. That is not normal, as you know. Get this taken care of quickly. firstname.lastname@example.org
Davida's February 22 reply to Susan B's February 16, 2003 - Hi Susan, Is your husband's blood pressure stable? Sometimes this is a sign of extreme high blood pressure. email@example.com
George, February 22, 2003 - Hi, I just had my first experience of how fast a person with CHF can crash and burn. I learned a new lesson which may be helpful to others who find themselves in the same circumstance. For many reasons my wife's CHF specialist and nurse practicioner were not located at our emergency hospital. This caused a bureaucratic mess in obtaining necessary records quickly. The doctors explained to us the reality that hospitals do not share records willingly. The moral of the story is that all of our medical caregivers should be located at our emergency hospital. I never realized how important this was until now. It really makes me feel stupid. firstname.lastname@example.org
Rosemarie, February 22, 2003 - Hi, Thank you Annie and Davida for responding to my post earlier this week. Frank's black eye has gone down a lot now and is a paler shade of purple but spread slightly to the other eye. The first heart problem he had was actually atrial fibrillation so we are well aware of that still being present despite treatment. He had an ablation years ago but when we saw the specialist in January he said that Frank's heart rate was higher than it should be and still very irregular, but he's not a suitable candidate for even the new pacemakers.
What I struggle with mostly is not knowing what to expect as his cardiomyopathy progresses. In this country (South Africa) they don't seem to speak so specifically of the stages of the heart disease so as new things happen I'm not sure whether they're a result of different drugs or just progression of the disease. He's been on Atacand now for almost 2 weeks and his cough is still very much there. So any further help would be appreciated. email@example.com
Lee's February 24 reply to George's February 22, 2003 - Dear George, A notebook of your wife's tests and transcripts from the hospital and doctor's office records might help in the case of going to a new hospital or doctor's office. I try to keep mine up to date and grab it on the way out the door to the ER. I hope this helps, Lee. JDaisy@optonline.net
Laura, February 24, 2003 - Hi, I would like some information on the relevance of sleep apnea to CHF. A family member was just recently diagnosed with CHF and now is on a ventilator due to sleap apnea. Can anyone send me some information I will be able to share with other family members who don't understand. I would appreciate it very much. I sent the link by e-mail for this site to the family. Thank you, Laura. firstname.lastname@example.org
Davida's February 24 reply to George's February 22, 2003 - Hi George, My husband was in a similiar situation. The closest hospital was not where his CHF doctor had priveleges but it was the first hospital to diagnose the CHF so it has some of the records. You may want to get a copy of pertinent records in case of an emergency, such as blood tests, heart tests, x-ray reports and a list of all meds to take with you in case of an emergency. The worst part is transferring a patient between hospitals. The insurance companies don't like that at all. Can you not find CHF doctors affiliated with your emergency hospital? The answer to that question for us, was no. We weren't willing to find a new doctor. email@example.com
Susan B, February 24, 2003 - Hi, Thank you for everyone who wrote. My husband's protime was 2.6. His blood pressure about 120/70. His nose was just too dry. Also, he has sinus trouble from before CHF. He has been doing fine the last week. Thank you all again, Susan B. firstname.lastname@example.org
Mel G's February 25 reply to Joyce's February 21, 2003 - Hi Joyce, I'm a 45 year old female with cardiomyopathy, and after having V-tach was implanted with an ICD here in Australia. For the first week I think you'll find your husband's "site" is sore, but it gets progressively less so and should not interfere at all after the incision settles down. He may have his arm movement restricted for 4 to 6 weeks so that the leads don't pull while they heal into place.
The difficulty most patients seem to have is with the anxiety over therapy (shocks) being delivered. Fortunately I haven't had the anxiety or the shocks! ;-) My children named my unit "Spike" and we are all grateful that he's there. There is a very good web site for patients with an implantable defibrillator: Find it under the name "The Zapper" here. Best of luck. email@example.com
Carla, February 26, 2003 - Hi, This is my first post. My husband has had CHF for 8 years. He is 53. His EF is 14%. His doctors have encouraged a heart transplant for the past 4 years but he refuses. He finally has accepted having a pacemaker and a 3 wire ICD implanted. Does anyone have any information or experience with the 3 wires? All I have seen is the 2 wires. Are there things that he will need to avoid? Needless to say, I am scared, worried, and frustrated that I don't know enough about this. firstname.lastname@example.org
Katherine H's February 26 reply to Joyce's February 21, 2003 - Hi Joyce, Another good website is implantable.com found in the links list. They have a message board for pacemaker patients and defibrillator patients. An electrophysiologist technician and several nurses monitor the site and the information they give out is really good. email@example.com
Judy H, February 26, 2003 - Hi, I'm just putting in a request to include my husband Bob in everyone's prayers. He spent 4 days in the ICU and actually spiked to over 10 on his potassium! Now he's been in an intermediate unit for 3 days and is having tachycardia episodes, long and short. He has an ICD and is having a consult today with the EP doc. The docs are also trying to get his blood pressure to stabilize: it runs in the 80s over 50s and has dropped to the 70s over 30s! They are also trying to get his kidney numbers to as near normal as possible. Thanks so much! God bless you all. firstname.lastname@example.org
Donna H, February 27, 2003 - Hi, I wanted to share some good news with all of you. Yesterday we went to a follow-up visit with my husband's new cardiologist and found that since my husband's pacemaker implant, his EF is up to 45 to 50%. The doctor still would like for him to meet with the heart transplant team but he says it now looks unlikely that he will need a transplant.
Though we are not sure why his EF has risen so much, we have tried several new things in the last 6 months, including the pacemaker, acupuncture, CoQ10, and an increase in Coreg. He is still in a-fib and we are discussing a cardioversion but are hesitant because we have heard so many horror stories about the drug amiodarone (Cordarone). Also, the doctor tells us that the success rate is around 50% and only 20% if he doesn't take the drug. Whatever has helped, we are happy to get some good news! email@example.com
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