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

Kelly S 4-1     lots of changes very quickly
 
Jon 4-1     the forum
 
Kim S' 4-1 reply to Nancy S' 3-25     thanks for the message & to Jon
 
Jon's 4-1 reply to Kim S' 4-1     forum
 
Nancy S' 4-2 reply to Kim S' 4-1     low BP
 
Susan B's 4-3 reply to Jon's 4-1     forum activity
 
Donna H's 4-5 reply to Susan B's 4-3     support & more
 
Davida S' 4-5 reply to Susan S' 4-3     why I think this side is not very useful to many
 
Derald G's 4-5 reply to Nancy S' 3-25     memory and concentration problems
 
Jon's 4-5 reply to Derald G's 4-5     memory and concentration problems
 
Jo Ellen 4-6     when do we go to the hospital?
 
Jon's 4-6 reply to Jo Ellen's 4-6     that's a tough one
 
Annie G's 4-6 reply to Derald G's 4-5     memory and mental function with heart failure
 
Meg 4-6     coping not with the CHF but the person who has it
 
Anita S' 4-6 reply to Jo Ellen's 4-6     when to go to ER & more
 
Susan B's 4-6 reply to Jo Ellen's 4-6     when to go to the ER & more
 
Barbara's 4-9 reply to Meg's 4-6     coping not with the CHF but the person who has it
 
Norma's 4-9 reply to Meg's 4-6     coping not with the CHF but the person who has it
 
Lisa Z 4-9     seek amiodarone experiences
 
Shelby H's 4-9 reply to Jo Ellen's 4-6     when to go to the ER? & more
 
Nancy S' 4-9 reply to Derald G's 4-5     pacemaker experience
 
Donna H's 4-10 reply to Meg's 4-6     pacemaker experience
 
Susan B's 4-10 reply to Anita S' 4-6     thank you, charts for progress & more
 
Susan B's 4-10 reply to Barbara's 4-9     coping
 
Susan B's 4-10 reply to Lisa Z's 4-9     amiodarone experience
 
Lisa Z 4-11     update & more
 
Jon's 4-11 reply to Lisa Z's 4-11     a CHF doc is a necessity & more
 
Kelly S' 4-11 reply to Barbara's 4-9     adjusting to life with a CHFer & more
 
Anita S' 4-11 reply to Susan B's 4-10     coping
 
Jeff 4-11     CHF specialist very important
 
Lisa Z 4-12     seek CHF specialist in Pittsburgh
 
Kim S' 4-12 reply to Susan B's 4-10     update, seek BP monitor suggestions
 
Susan B's 4-12 reply to Anita S' 4-11     coping
 
Joyce 4-13     venting - it's a hard road
 
Karen F's 4-13 reply to Lisa Z's 4-12     a good CHF specialist
 
Carol C 4-13     don't forget to take care of yourself
 
Derald G's 4-15 reply to Kim S' 4-12     blood pressure monoitors for home use
 
Susan 4-15     hair thinning from meds?
 
Millie 4-16     does anyone else feel this way?
 
Amy 4-16     glad I found this site
 
Lisa Z 4-16     update and thank you all
 
Lisa Z's 4-16 reply to Susan's 4-15     meds and hair loss
 
Jan's 4-17 reply to Millie's 4-16     coping with illness & ICD
 
Heather's 4-17 reply to Millie's 4-16     coping with a spouse's ICD
 
Kelly S' 4-17 reply to Amy's 4-16     how to stick to the diet?
 
Barbara's 4-17 reply to Millie's 4-16     coping with a spouse's ICD
 
Kelly S' 4-17 reply to Joyce's 4-13     maybe there are local support groups
 
Karen S' 4-18 reply to Donna's 4-5     "he looks healthy" really gets me
 
Jon's 4-18 reply to Karen S' 4-18     possibilities?
 
Katherine S' 4-19 reply to Karen S' 4-18     dealing with people
 
Karen S' 4-19 reply to Jon's 4-18     needed a laugh
 
Jon's 4-19 reply to Katherine S' 4-19     heart disease and heart failure
 
Katherine S' 4-19 reply to Jon's 4-19     heart disease and heart failure
 
Beverly C's 4-19 reply to Jon's 4-18     coping with other people
 
Roy 4-20     is it okay to fly with CHF?
 
Anita S' 4-20 reply to Karen S' 4-18     people who refuse to understand
 
Annie G's 4-20 reply to Karen S' 4-18     people who refuse to understand
 
Millie 4-20     thanks to everyone!
 
Roy 4-22     thank you for info
 
Shelby H's 4-22 reply to Roy's 4-20     traveling with heart failure
 
Sandy 4-23     can't sleep, worry constantly, what to do?
 
Roseanne S' 4-23 reply to Kim S' 4-22     buying an affordable home blood pressure kit
 
Derald G's 4-24 reply to Sandy's 4-23     take care of yourself first
 
Kelly S' 4-24 reply to Sandy's 4-23     coping, those looks
 
Jon 4-30     technical difficulties
 
Daryl J 4-30     seek CHF doc in Everett, Washington
 
Roseanne S' 4-30 reply to Sandy's 4-23     hang in there - my experience
 
Jan's 4-30 reply to Sandy's 4-23     hang in there - my experience
 
Annie G's 4-30 reply to Sandy's 4-23     hang in there - my experience
 
Irene M 4-30     seek advice
 
Karen S' 4-30 reply to Sandy's 4-23     hang in there - my experience
 
Maria's 4-30 reply to Sandy's 4-23     hang in there
 
Peggy's 4-30 reply to Sandy's 4-23     hang in there - my experience
 
Nancy S' 4-30 reply to Millie's 4-16     it really does get better & more
 
Susan 4-30     what is her future likely to be?
 
Phyllis E 4-30     cardioversion coming up & good news
 
Penny 4-30     has anyone benefited from CoQ10?
 
Tom R 4-30     EECP trial enrolling patients
 
Jon 4-30     posts
 


Kelly S, April 1, 2002 - Hi, I am really glad find this board. My 34 year old husband Larry was diagnosed with CHF in May of 2000. He thought he had the flu. One morning he woke up and just couldn't make it to work. He said, "Take me to the hospital." My husband never says that! Well, we spent several hours in the ER. They released him to go home with no relief or diagnosis! Originally they were thinking it was his liver, due to it being enlarged. Finally he had a liver biopsy and that came back negative, so his doctor referred him to a cardiologist.
     He was diagnosed with CHF/cardiomyopathy with a 10% ejection fraction. They started him on a series of meds; a lot of them I've seen posted on this board. His EF is now up to 50%. During this time he's also applied for Disability, which for him was very frustrating. He still has his up and down days, but more seem to be up.
     However, in June of this year he was diagnosed with diabetes and is now insulin dependant. The hardest things for him to cope with are his inability to do the kind of work he likes, the diet changes, and having to take so many meds and now give himself 4 shots a day! I'm not sure how I'd react with so many changes in my life in such a short period if it were me, to be honest with you. So far I really like the site and message board. I am hoping to visit here often and thank you Jon for a great site, Kelly. larkel@locl.net


Jon, April 1, 2002 - Hi everyone, Well, this forum stays. I gotta tell you, it was the huge response from CHFers (here and by e-mail) that both worried me the most and also that caused me to decide to keep the loved ones' forum going. Too lengthy to explain but the forum stays. :-) Jon.


Kim S' April 1 reply to Nancy S' March 25, 2002 - Hi Nancy, Thanks so much for sharing your experience. I'm so glad to hear from someone who's been there, done that. My mom will be so happy to hear that there's a chance she may have some more energy after the procedure. Right now she's sleeping most of the day, and I wake her up whenever I call. She passed out at her doctor's office on Thursday, and they discovered that her BP was only 80/20. They've decided to put off the biventricular pacemaker until maybe June, so we'll see.
     Again, thanks for writing, and I hope you continue to do better & better! Jon, your post was mysterious. Can you tell us the short version of what happened, and what worried you? kimseaton2000@yahoo.com


Jon's April 1 reply to Kim S' April 1, 2002 - Hi, Wasn't meant to be mysterious, just a way to avoid a lot of typing. ;-) When a forum for group A gets most of its responses for continued survival from group B, one must wonder if group A is all that concerned. I know (obviously) that some people are very active here, whether visibly or not, but if 50% or more of posters feel slighted at lack of response, the benefits of maintaining the forum taper off rapidly. That's most of it. <g> Jon.


Nancy S' April 2 reply to Kim S' April 1, 2002 - Hi Kim, Tell your mom that I also had low blood pressure. I think my lowest was about 80/38 or something like that, but it's been better since my implant. It's not always up to normal but is most of the time. I hope she does better and better. When I was diagnosed and they got me on the correct meds, I stopped sleeping all the time. I hope that works for her too. Good luck, I'll say a prayer for her, Nancy. ns1@alltel.net


Susan B's April 3 reply to Jon's April 1, 2002 - [Jon's note: This has been thoroughly addressed in the past couple of months and those discussions are in The Archives; So I am not replying to posts about participation. Others are welcome to do so :-)]
     I am suprised that "posters feel slighted at lack of response." People, please understand that all of us are dealing with the same overwhelming things: a loved one's illness and all the problems and concerns that go with that. Some of us are outspoken (like me) and some people are very private about things. I don't know what to say to the people I don't write to. Please don't feel bad because no one replied. We don't have anything to say that will help you or we are just dealing with our own lives.
     For me, it means a lot to just have a place to go and read or write where other people understand, without the medical lesson. My clients, friends, and family often ask me how my husband is doing and that's great but it is hard for people to understand that he can be doing great one minute and get just a little sick and go downhill so fast the next. Here I can vent and still be okay with the rest of the world. It looks bad when I am crying in court because of something with my husband. I can cry here and no one will think any less of me.
     I read this forum every day and I encourge others to read it too. I need this to vent and help and just know that I am not alone. I share what I have learned and pray for all who need it. To people who want replies to their posts and don't get any, I am sorry that I had nothing to help you, but when you get to the next problem write again. Maybe someone will be able to add something helpful. Good luck to all, Susan Bratcher. gbratcher@kc.rr.com


Donna H's April 5 reply to Susan B's April 3, 2002 - Hi, I agree very much with your post. I only found this forum a few months ago but it has helped me and my husband so much. I have learned more about CHF since January than in the entire first year my husband was diagnosed.
     I don't respond to posts often for a couple of reasons. The first reason is that often I don't know enough about the subject to add anything helpful. The second reason has been mentioned over and over here. I am nearly overwhelmed with work, caretaking, child care, etc,...
     I especially appreciated your remarks about how quickly someone with CHF can go downhill. So often people look at my husband and tell me that he must just be a hypochondriac because he looks fine to them. Those people don't know about the fact that he can't walk up a stairway without stopping to rest or how just being up and active for 4 or 5 hours can wear him out to the point of exhaustion. His EF is up to 40% from 30% at the first of the year and he is feeling much better, but still must pace himself.
     It is nice to know that there are others who understand, even if they are just sitting at their computer and silently nodding their heads in agreement. herdrich@grm.net


Davida S' April 5 reply to Susan B's April 3, 2002 - Hi Susan, The mental support on this side is helpful to the caregivers as all have suggested, but the obvious is that the problems we describe here are problems that our family members and friends - the patients that actually have CHF - are experiencing, not us. Caregivers often have very little to offer in regard to this. It is the actual patients on the other side that could provide feedback because they have walked in the shoes of CHF.
     Since not all CHF patients visit here, our chances of getting a response on a problem involving our loved one with CHF are slim and none, as we can visibly see for ourselves. Thankfully, at this point in our lives I am past needing mental support from other wives in my situation. The support I need from time to time is if a medical symptom or concern comes up regarding my husband. We as caregivers need our most mental support in the beginning. Some of us whose loved one has had CHF for awhile (26 months) have gained the strength we need and don't use this forum.
     We come here in hopes of learning more about this disease from others in the same boat as our loved ones with CHF. I reply to every message I am capable of but very few of us caregivers can answer questions or give medical advice regarding problems only another patient would have insight into. Consider no response on this side as a "we don't know" instead of a "we don't care" because we do care, we just can't answer the questions. cavalier_1@msn.com


Derald G's April 5 reply to Nancy S' March 25, 2002 - Hi Nancy, I'm curious about the memory thing. My doctor didn't think my cardiomyopathy affects memory but I used to read almost a novel a night and now I'm lucky if I can finish one a month. I'm a computer programmer but can't really concentrate. Do you think that cardiomyopathy even if you don't have a lot of symptoms can cause memory loss and lack of concentration? Also I have LBBB too. Is that why you got the biventricular pacer? deraldg@earthlink.net


Jon's April 5 reply to Derald G's April 5, 2002 - Hi Derald, Regarding memory and concentration, I even put this in The Manual as a common symptom, it is so common. Reduced blood flow to the brain is one obvious culprit and meds are another. It really stinks, doesn't it? Your doctor is not up to speed on this one. Jon.


Jo Ellen, April 6, 2002 - Hi, My husband was diagnosed with DCM over 18 months ago and with CHF within the past 4 months. He received a biventricular pacemaker in February and his condition has generally improved. However, he still goes through periods of pretty severe shortness of breath. We expect him to continue having bad days mixed with the good, but I don't know what symptoms call for taking him to the hospital. I have taken him to his CHF doctor once between his monthly visits, but it's hard to tell when that's necessary. Can anyone give me some guidelines? By the way, edema in the feet and hands has not been one of his symptoms, even on his worst days. ssharpe@midsouth.rr.com


Jon's April 6 reply to Jo Ellen's April 6, 2002 - Hi Jo Ellen, That's a tough one. This is highly individual. I am no doctor and can only relate my own personal experience on this one. If my symptoms change in a short period of time (a week or less), I at least call my CHF doc, who always returns my calls.
     Once, I was standing in front of an auto repair counter to pick up my truck when I realized that I was gasping for air. All of a sudden it hit me that I had been doing so for many days. I had grown so accustomed to being short of breath that I had not recognized the difference in degree until that moment. I went straight to my CHF doc's office without an appointment and said, "I have to see Doc Porter." He wasn't available (of course <g>) but an associate saw me within 15 minutes and called my doc. They did a "quick" echo and found that my heart output had gone into the toilet. The next day I was in the office with my doc discussing options and changing meds.
     Well, to make a long story even longer, I got better. The point is that sometimes we CHFers don't notice how bad we are getting because we are used to feeling pretty rotten. If your husband seems worse to you, talk to him. If you two believe at that point that he is getting worse, go see the doc.
     As for when to go to the ER, that's a bit easier but also very individual. If he feels worse in a short period of time or has a new symptom, and you cannot see his CHF doc that day, go to the ER. Don't take chances. Over time, you will both learn (him more than you) when his body is giving danger signals as opposed to just being CHF-ish. The exception is arrhythmia. If he has one, get it identified and treated now. If he develops one, go to the ER now.
     One thing to remember is that lack of visible edema means nothing. Any doctor who thinks that because a CHFer has no visible edema that he is "okay" is a doctor to avoid like the Bubonic Plague. For more, start here (let it load) and keep reading when you get there. Dr. Robert C. Bourge says, and I quote, "Just because a patient has dry lungs, no rales, and no third heart sound (S3) doesn't mean there is no volume overload." ;-)
     Finally, I must say that the decision to go to the ER depends very much on the moment and on the patient. If you think you might need to go to the hospital, I advise you to go. Better safe than sorry is a good rule to follow in CHF. Jon.


Annie G's April 6 reply to Derald G's April 5, 2002 - Hi Derald, CHF most certainly does affect memory and brain function. Over the last 4 years my husband has had great improvement in his concentration. It was quite bad when he was first diagnosed but as his heart function has improved so has his ability to read novels and what not. When he was first diagnosed it would get worse over the day, like a train that couldn't get up a hill. He often got sent to his room to lie down by me to help. It seemed like it was just too much work for his heart to keep trying to pump blood all the way up to his brain, so if he lay down and had a rest it would help a bit. He would do his best stuff in the morning when he was fresh from his partial night's sleep, Anni. annieg129@cogeco.ca


Meg, April 6, 2002 - Hi, In November of 2000 my husband was having trouble with what doctors kept calling bronchitis or pneumonia. His visit with the cardiologist a week before had gone fine. Then his legs swelled up. I wasn't getting the answers I wanted from the pros so I searched the Internet for "swollen ankles" and found this group, and found answers.
     I feel to this day that the information I received from this site on that day saved us untold delay and grief. It is now a year and a half later. Bob went through all the hoops and tests and is on the transplant waiting list. I print out some of the more pertinent posts for my husband to read in the hopes of taking his focus off his own black cloud.
     I'd have only one suggestion. How many of us caregivers feel our own self-pity and then feel ashamed because of it? How many take the slings and arrows of the patient and let them get away with it? I've recently had it pointed out to me that this is not entirely healthy for either one of us. Does anybody else have an experience, opinion, or advice? droim@aol.com


Anita S' April 6 reply to Jo Ellen's April 6, 2002 - Hello JoEllen, I agree with Jon that in time you will be able to recognize the little changes that signal it is time to go to the doctor or the ER. I took my husband to the ER a couple of weeks ago and he spent a week in there trying to get his blood pressure to stay up above 65/48. The changes that I noticed were that he just seemed more withdrawn and quiet than usual. He wanted to sleep more and he just seemed paler. None of these symptoms by themselves seem that bad but if you know how your husband usually acts, then you will know that something could be wrong.
     It is better to go to the ER and be sent home with nothing wrong than to wish later that you had done something. I wish you and your husband the best. Phil has had CHF since 1994, so don't worry too much. You will be a pro at taking care of him soon. Take care, Anita. dreamersila@netscape.net


Susan B's April 6 reply to Jo Ellen's April 6, 2002 - Hi Jo Ellen, My husband has only been sick for the last year, but we go to the doctor's office or hospital if he is blue (lips or nails - this has only happened once), a fever that won't go down, or if his breathing sounds funny. There is his normal SOB; then there is a different sound when he is not doing well. My husband is not having any problems with edema either. Most of the time my husband looks "too good to be sick." He pushes himself even when he is sick, but we are taking active steps to get him well when he just gets a cold. We have to stay on top of the little illnesses or he gets bad quickly.
     In May of last year the nurse at the ER put him in a room to wait for over 1 1/2 hours before anyone talked to us again because he (the nurse) did not understand how sick my husband was. We took all of the heart drugs and told him that my husband had cardiomyopathy. He marked the chart that my husband was at the ER for a cold and not a word about the cardiomyopathy with an EF of 15 to 20%.
     My husband has not had any chest pain since he first got sick but if he did have chest pain, we would run to the doctor's office. He also goes to the doctor when the coughing gets bad. I hope this helps.
     Yesterday one of my clients - who looked great - told me she was a heart transplant patient. She told me that she never looked sick even at her worst. It was exciting to share this site with her. Thank you to the people who responded to my posts. Again as always, thanks, Jon, Susan B. gbracher@kc.rr.com


Barbara's April 9 reply to Meg's April 6, 2002 - Hi, I can relate to your post. I read both sections on this forum every night, and it is full of information. My husband went through a very rough time for several months, but with the proper medication and doctors who really care about their patients, things have improved.
     I agree that as a caregiver you do at times feel ashamed because you may get angry at your spouse but you remain silent; you suffer silently because you know you can no longer enjoy the activities you used to share; you feel guilty because you're active and full of energy and your spouse is tired and needs to rest. You do not know from day to day what will go wrong. Eventually you're afraid to leave your spouse alone, so you stop doing the things you used to do. You also find yourself on the computer a lot more, secretly hoping to find the answers you're looking for. It would be interesting to see how caregivers cope with the day to day routines and the stress. Scooty59@hotmail.com


Norma's April 9 reply to Meg's April 6, 2002 - Dear Meg, I empathize totally with the self-pity and resulting guilt over our CHF family member's "black cloud." Before my dad was diagnosed, his demeanor had gotten so bad that I hated calling him because all I would hear about were his aches and pains and his impending end. The depression that was around him was palpable. I was convinced he was in the middle of an undiagnosed chronic depression and was urging my mum to have it dealt with. The guilt I felt because I wanted to stay away from his constant "black cloud" was awful. I have sent you something (privately) I wrote during that time that maybe you can relate to.
     My dad was very recently "pulled from the brink" after a particularly bad edema incident. I think experiencing this, my dad has had a wake-up call. He seems to want to make the most of what he has left now that it was nearly taken away. His anger and meanness seem to have dissipated and we have our old dad back, which is wonderful. I hope you reach the light at the end of your particular trouble. The guilt: we just have to learn to forgive ourselves and our CHFer loved ones. johnstewart@cogeco.ca


Lisa Z, April 9, 2002 - Hi everyone, I have posted here before. Again Jon, thank you for such a wonderful site. It keeps me sane when I feel like I am going to lose it, and has such a wealth of information. My dad has DCM, CHF, type II diabetes and hypertension. We have had a few whirlwind years. In January of 2001 he was in cardiac arrest twice and ended up having an ICD installed. Fortunately he has had no shocks, and all has gone fairly well.
     He was hospitalized two other times last year: once with CHF and once with a horrible bladder/kidney infection. Our family has been through the gamut because I myself had major back surgery in January of this year. This is my second back surgery and I am only 33.
     I am wondering if there is anyone out there that takes amiodarone (Cordarone). My dad was taking 400mg per day, recently reduced to 200mg per day plus 3mg Coumadin per day. If you take it, have you suffered from increased shortness of breath? I have read about pulmonary toxicity from amiodarone and am now very concerned. I made an appointment for my dad with his PCP today and then he is going to have a pulmonary function test.
     His SOB is not constant, but it seems as though it is more severe lately when he exerts himself in any way, such as up one flight of stairs or a trip to the mailbox. He also takes Toprol-XL, digoxin, furosemide, Accupril, Glucotrol, Proscar, Flomax and Lescol-XL. He does still drive and has actually been looking forward to playing a little golf so I am trying to nip this in the bud, so to speak.
     His EF is between 20 and 25%, and he is 72 years old. He was diagnosed with DCM about 6 years ago. My mom and I worry about him profusely and we have an extremely close-knit family. I feel bad because I am always asking him how he feels. I don't want to be a nag but the whole disease depresses him and I think he dismisses a lot of things about it. I just want to make sure we are doing all that we can for him, so he will be with us as long as possible. I would greatly appreciate any input. Best wishes to each and every one of you. zeigler@zbzoom.net


Shelby H's April 9 reply to Jo Ellen's April 6, 2002 - Hi, I'm a newly diagnosed CHF patient and my husband and I are struggling with the same issue. When do we call the doctor? When do we go to the ER? One thing my doctor suggested was keeping a log of my symptoms. Start out with the day's weighing in (I never have had swelling of the ankles or legs, but lost 9 pounds of fluid the day after my doc started a diuretic), then just jot down any kind of bothersome symptom and the circumstances that surrounded it. That can help you identify a pattern and also provide good information for your doctor. Also don't be afraid to ask your doctor for more frequent appointments if you think he's having more bad days than good days. Sometimes all you need is a medication adjustment. There's no need to suffer if you don't have to. Good luck. shelbyscout@hotmail.com


Nancy S' April 9 reply to Derald G's April 5, 2002 - Hi Derald, Since Jon answered your question about the memory thing - which I agree all of us probably have - I will tell you what I can about the reason I got the pacemaker. I'm not sure the LBBB had anything to do with it since my orignal cardiologist said that wasn't really anything to worry about. The reason I was given one is that my heart wasn't beating in sync. Usually both sides contract and expand in a particular rhythm. Think of how a heart looks when it beats, both sides going out and coming in. One side of mine was going out at a time and then it would come back in and then the other side would go out, kind of like a see-saw is the best way I can explain it.) I was told that this is very dangerous and I would have been more prone to sudden death. I hope this helps you.
     Try not to let this get you down. At first I was really depressed and wondered why me, but now I feel more confident that I will make it. There are are a lot of new drugs and devices that we have access to now that weren't around in the past and I have faith in God that there will continue to be more help for us. Take care, Nancy. ns1@alltel.net


Donna H's April 9 reply to Meg's April 6, 2002 - Hi, My husband was diagnosed in September of 2000. I thought he had bronchitis but when our family PCP saw him, she immediately knew he was in CHF. She also told us that it might have been caused in part by his sleep apnea. That day she sent him on to the hospital but it took the doctors there from then until January of 2001 to agree with her.
     Over the past 18 months, we have been so concerned with getting him well that I didn't realize what a toll it was taking on us emotionally. Both of us have felt sad and tried to keep it from each other. Finally a friend told me we both need to grieve for what we have lost so we can go on with new and different plans for the future. After that I sat down with my husband and told him how scared I have been and we discussed the future and how it will be different. So far we have just taken baby steps in that area but it is helping. herdrich@grm.net


Susan B's April 10 reply to Anita S' April 6, 2002 - Hi Anita, That's a great story and it helps me. Thank you for sharing. As I was reading I wondered if you have a blood pressure monitor. Our insurance company has a nurse to oversee my husband's care. She encouraged us to get one. My inlaws have high blood pressure and other medical problems and they have one at their house too. We use the charts from Heartfailure Online to print off the weight charts. My husband wants charts for everything: weight, exercise, and blood pressure. I may just teach him more about the computer since he has more time than I do, or get him a book to list it all. Thank you for sharing. As always Jon, thank you for all of your time and hard work, Susan B. gbracher@kc.rr.com


Susan B's April 10 reply to Barbara's April 9, 2002 - Hi Barbara, What a great question you pose! I have been trying to walk to help with the stress but I don't always have time. I read a great book, which I wrote here about last fall, "How to Survive your Spouse's Chronic Illness." The author suggests taking time for yourself. A Bible story tells us to drink from the well before we can give to others. Think of the time to yourself as filling up your well. I do and it helps me.
     I have a demanding business and I must stay on top of it or it could be gone tomorrow. So taking time for business is a requirement. Myself, I don't take very much time for myself. My friends and family listen to me complain if it gets too bad but no one whats to be around an unhappy person for very long.
     I think that I have started grinding my teeth in my sleep to help me deal the the stress. Reading these posts and writing also helps me deal the my powerlessness over my husband's illness. I have also had him hold up a pillow to me to hit when I really want to hit the illness. My husband sometimes talks for the pillow so that I can yell at it to get my anger out for the illness on the poor pillow.
     I still pray that this last year has been just a bad dream and tomorrow I will wake up and everything will be back to normal, whatever that was before the illness. It helps that my husband is in denial about the illness and he wants to believe that he can go fight fires tomorrow. Oh well, at least he take the meds and does the workouts. The other part is that he doesn't need much daily care. I just have to help him on the bad days at the doctors' offices. He still believes he is well so I have to go to every visit or I would not be part of the information loop. I also check on a random basis that he has taken all his meds. He sometimes forgets because of the illness or he gets busy and just plain forgets for a few hours.
     We also try to do things that we enjoy doing together: walking together, going to movies (on bad days we rent movies), some traveling. We do our house projects, just a little slower. He takes his time and if he is feeling bad we put it off if possible. We all have goods days and bad days.
     It also helped me to know that it is "normal" to feel the way I do. Some days I cry all day long. It is my understanding that crying releases hormones to help you feel better. Some days I am just crying in my car just because of the illness and how it has changed things in our lives. I hope this helps. Good luck, Susan B. gbracher@kc.rr.com


Susan B's April 10 reply to Lisa Z's April 9, 2002 - Hi Lisa, My husband did take amiodarone (Cordarone) at first. Then he was cardioverted. After we changed doctors to a CHF doc, he is doing so well that he got to cut the dose in half and then in half again. Just 6 weeks ago he went off it. He is wearing the holter monitor today to see if he can stay off it. We did not notice any increased SOB while he was on amiodarone. The long term side effects of the drug are bad, but it does the job. My husband had not been in a-fib for over a year. If you are concerned, talk to the CHF doc about the long-term plan. It could be that the long-term plan is to lower to dose. Ask questions and more questions. Good luck and God bless to all, Susan B. gbracher@kc.rr.com


Lisa Z, April 11, 2002 - Hello again, Just giving a little update. Thank you for the information regarding amiodarone. My dad is still experiencing this SOB, and has since seen his cardiologist and his PCP. They both think he is somewhat overweight (about 20 lbs) and with the DCM that extra weight is putting extra stress on his heart. Okay, maybe, but I am not totally sold.
     My dad says he feels a little bit of pressure right above his stomach, and it is hard to take a deep breath. Monday morning he will go to have a pulmonary function test and also to see his electrophysiologist that implanted his defibrillator. They did cut his amiodarone in half once already, but since he has been on it for about 14 months now he is going to have the breathing test so I guess we shall see. I still worry about the pulmonary toxicity from amiodarone.
     I just think it is better to be safe than sorry, and he is just not looking so great either. It may be a little bit of over kill, but I can tell that something is wrong. Both the PCP and the cardiologist say he is not in CHF right now. If anyone has any other idea, please let me know. I hope you are feeling a little better Jon. Thanks again for all that you do. Take care, everyone. zeigler@zbzoom.net


Jon's April 11 reply to Lisa Z's April 11, 2002 - Hi Lisa, I am not a doctor. With that said, I very, very seriously doubt that weight has anything to do with the SOB if he is only 20 pounds overweight. It is far more likely to be heart-related or heart meds-related. The feeling of pressure he describes often means either a drop in cardiac output, or liver and abdominal congestion from edema that is not yet visible.
     Does he see a CHF specialist? If so, your dad should see him about this pretty quickly. Obviously he is in CHF but is fairly well compensated - but not completely. A CHF specialist should cut through the uncertainty and get it right. Jon.


Kelly S' April 11 reply to Barbara's April 9, 2002 - Hi Barbara and Susan B, I can relate to both posts. When Larry first got sick, I felt like he needed me here to help him. Now with the medications, he's improved greatly. There are still times when I have bounds of energy and he's not feeling like doing a lot, but I sometimes just go by myself or ask a friend.
     At first I saw a drastic change in the way our lives were. Our activities changed, but it's returned somewhat to normal although it will never be the same as before he got sick. I'm just very thankful for his medications and for his continued improvement. Some days I think he's also still in a state of denial and also wishes he could go back to his old job. His doctors have pretty much told him he'll never be able to do that kind of work again.
     He did get good reports at his last doctor's visit, but they want him to exercise more. I am hoping with spring coming up, we'll be able to get out and walk. Here's hoping all is going well for everyone else out there and thanks again for this board. It's great to be able to communicate with others experiencing many of the same situations. larkel@locl.net


Anita S' April 11 reply to Susan B's April 10, 2002 - Hello, We do have a blood pressure monitor at home and now with Phil's worsening BP, we use it more. Thanks for caring enough to ask.
     We caregivers do need the support of each other. I don't know how the caregivers who work have the time and energy to take care of their spouse. I am glad that at this time I'm not working since it seems like with taking care of all the meds, going to the doctors at least 4 times a month because of all of his problems, having to do the driving, and all of the other things all of us do for our spouse, I don't think that I would have the energy to work.
     I hope the newer caregivers understand that they will learn how to cope as time goes on. Sometimes it does seem like we have too much to bear but I also have a strong faith that God will help me get through whatever is going to happen. As Donna H said, we do need to grieve for our lost dreams. I sometimes get short tempered and cry because I get tired of all the worry and wish things were like they used to be, but I'm glad that I still have Phil with me and that is the most important thing.
     I don't think we should feel guilty for wishing things were the way they used to be. I bet the CHFers are wishing that as much or more than we are. Take care, Anita. dreamersila@netscape.net


Jeff, April 11, 2002 - Hi, I want to encourage everyone to look for a CHF specialist rather than a regular cardiologist. My wife was diagnosed 2 months ago with DCM and was placed on medication at that time. The dcotor seemed top-notch and by conversation with cardiologists we knew, is very good. However, she went to see a Philly-area CHF specialist, and was put on a whole new set of prescriptions specific to her situation. No criticism of the prior doctor is intended but my wife walked out of the visit with the CHF specialist feeling so much better about her situation and feeling that the treatment is now specific to her circumstances. I hope this helps and thanks as always to Jon, Jeff. jeffginny@msn.com


Lisa Z, April 12, 2002 - Hello again everyone, I am now wondering if anyone knows of a CHF specialist in Pittsburgh, Pennsylvania? I can't seem to locate one specifically for CHF. I would appreciate any input. zeigler@zbzoom.net


Kim S' April 12 reply to Susan B's April 10, 2002 - Hi, The blood pressure monitor is a great idea! I was looking into that for my mom since her BP at her last doctor's visit was 80/20, but the ones I found that are supposed to be accurate and reliable were about $700. Does anybody have any suggestions or leads? Thanks!
     By the way, mom's new doctor (Doc Porter) is seconding the biventricular pacing idea, so it looks like it's a go. We're a little less scared after hearing Nancy's experience. Thank you all so much! kimseaton2000@yahoo.com
 
Jon's note: If it's Charlie Porter at MAC at KU, you're in good hands


Susan B's April 12 reply to Anita S' April 11, 2002 - Dear Anita, I agree that we have to support each other. There are so many things to learn about how to get what you and your loved one needs from the doctors and insurance companies. I am still learning how to do it. I will tell you that my husband's chart has the "I am an attorney" all over it. It also says that I am reading this site and have learned a great deal about CHF (I have so much more to learn!). I put the fear of medical malpractice in the hearts of my husband's last heart docs, who are good docs, just not CHF docs.
     Because of my limited experience with insurance companies I ask more questions and push more. That is why I asked you about the blood pressure monitor. I would not have thought to ask for it without this site and all the new info I have learned. I started asking what will insurance cover, and what will be helpful to my husband. We are going have the PT people out to train my husband to do a new workout with all the equipment we have at home. The insurance compnay nurse suggested it. My dad is shopping for more exercise equipment for us at the auctions. Everything goes dirt cheap! Even name brands and little used equipment is sold every day.
     My husband cleaned the house and did all the laundry and shopping before he got ill. He had more time off than I did. So we have hired help to clean the house. Our lady comes in once a week. My husband is doing well so he is doing most of the work around the house that he was doing before but some days he is not up to it and he moves so much slower even on a good day.
     He jokes about being sick. The CHF doc was giving him a hard time about being upset about not being able to chainsaw the fallen trees as fast as he wanted to. The hard work knocked him for a loop and so did the cold from the ice storm we had this winter. Susan B. gbratcher@kc.rr.com


Joyce, April 13, 2002 - Hi, I am making this post because I know everyone here will understand how I am feeling. Only people experiencing the same thing can understand. It is so hard trying to work a very stressful job and also care for a sick spouse. I have the added problem in that we moved to another state due to my job, right after my husband got sick. As a result, he has no friends or family around him. He gets very lonely and depressed, and this makes it even harder.
     I am not complaining and I expect no responses; but like everyone who is dealing with CHF, I just have to vent to maintain my sanity. I did break down the other day but hopefully I have overcome that and can now go on. I love this site. It gives me so much support. It helps a great deal just knowing I am not alone. CHF can be very difficult to deal with for everyone whose life it touches. Thanks for listening everyone. jas48@webtv.net


Karen F's April 13 reply to Lisa Z's April 12, 2002 - Hi Lisa, I am a CHFer from the other side. My CHF specialist (whom I adore) had directed the Heart Failure Program at the University of Pittsburgh before relocating to my area to join my cardiologist's practice and to establish a program for Congestive Heart Failure at my hospital. He is the Heart Failure "go to" guy in my area and I am very lucky to have him on my side. If the rest of the staff involved in Pittsburgh University's Heart Failure Program are as on the ball as Dr. Alvarez is, I think that would be a very good place to start your search. I hope this helps. ferhoodled@yahoo.com


Carol C, April 13, 2002 - Hi, This is a great site. My husband has had CHF for over 10 years. We are lucky that we have a great CHF doctor, who cares and keeps on top of my husband's care. We are now in the final stages of CHF and it is difficult. For all you spouses out there, I say it is important to take care of yourself - you are the one that needs to remain strong. I do not know how much longer we have but I do know that in these last difficult months or years, I am the one that holds this family together. I do not have time to be angry and I put my faith in God. I do what is right for my husband. Most importantly I take time for myself each day. Do not feel guilty or self-centered in taking time for yourself. You need it and you deserve it. I am so glad I found this site. chilic17@aol.com


Derald G's April 15 reply to Kim S' April 12, 2002 - Hi Kim, My mother and father-in-law use a BP machine that wraps around their left wrist. It's a very nice machine. I bought one for my parents and they love it. It was only 79.00 US and I bought it at CVS Pharmacy. deraldg@earthlink.net


Susan, April 15, 2002 - Hi, My mother-in-law has CHF and has just been stabilized after a very difficult 3 months. Her hair is now thinning. I'm not sure if it is falling out more or not growing properly. I think it is the meds, which are Coreg, Coumadin, Prinivil and Cordarone. Evidently all can cause hair loss. My question is, does anyone know if it continues? Has anyone else experienced this problem? susanyost@email.com


Millie, April 16, 2002 - Hello everyone, I am new to this posting so please bear with me. My husband was diagnosed with idiopathic cardiomyopathy and CHF a couple of weeks ago. It was very sudden. He got ill after supper one night and was telling me he felt funny, he went into ventricular fibrillation and the paramedics had to shock him to get his heart back into sinus rhythm.
     He was hospitalized and after many tests including a caths and an EPS, he had to have a defibrillator (ICD) put in because his heart arhythmia can be lethal. I am concerned about his heart failure. They have not given us a lot of info yet and he doesn't have any of the classic signs of congestive heart failure.
     I am worried about his mental state. He is only 50 years old and he says he feels old now. I watch him sleep at night to make sure he is breathing (not all night, I do sleep most of the night) but last night he was watching his favorite tv program and he was laughing hard and I found myself panicking inside because I thought his heart might go crazy. Am I being silly? I just can't help it. Is there anyone else out there with a spouse or relative who has a defibrillator? Anyone with the same feelings of fear? Please let me know. Thanks. mandrews@choiceonemail.com


Amy, April 16, 2002 - Hello everyone, I first want to say that I am so glad I found this site. Jon, you have given me so much information that it will take days to get through it all. My boyfriend has been an insulin-dependent diabetic for 30+ years and was diagnosed with cardiomyopathy and CHF in August of 2001. He was treated for allergies, then asthma for over 3 years because of a persistent cough and shortness of breath. Since then he has been hospitalized two more times (once for blood pressure getting too low as a result of overmedication with lisinopril, and now with pneumonia).
     He is doing much better than he was before he was diagnosed, and says he feels better than he has in years. It's been hard to adjust to certain things, like changing our diet to low-sodium especially for someone who loves pickles and hot dogs as much as he does but I'm going to try a bunch of the recipes you listed on your site. They sound great. Thanks again for all your support and assistance. This is an excellent site and is greatly appreciated! kookiesangel@yahoo.com


Lisa Z, April 16, 2002 - Hi everyone, Just another update and a sincere thank you for your responses to my posts. My dad went to two doctors yesterday. He had a pulmonary function test, and his lung function is 75%. They said that is pretty good considering his history of CHF, DCM and an ICD. The electrophysiologists looked back at all of his tapes since he had the defibrillator implanted and said that all is good and he has had no unusual activity. They took him off amiodarone (Cordarone) completely, even though it will still be in his system for at least 4 more months. Now I just hope he won't get any shocks.
     His cardiologist also upped his furosemide and potassium pills for awhile to relieve any volume overload. He seems to feel a lot better and looks worlds better. Thank you Jon; your info and my persistence is what has been the most helpful to him in my eyes. I hope you are feeling better. It is so true that you just have to monitor everything so closely, and ask questions and more questions! Take care, everyone. zeigler@zbzoom.net


Lisa Z's April 16 reply to Susan's April 15, 2002 - Hi Susan, My dad has been on two of those drugs - amiodarone (Cordarone) and Coumadin (warfarin). He experienced some hair loss when he started Coumadin. It seems to be slow and gradual, but it is definitely noticeable. My mom found him some shampoo at the GNC called Biotin, and it seems to help strengthen it a little. Other than that, there doesn't seem to be a whole lot you can do about it. Good luck, and I hope your mother-in-law continues to improve. zeigler@zbzoom.net


Jan's April 17 reply to Millie's April 16, 2002 - Hi, It can be so shocking when cardiomyopathy and CHF invade your family. I also have a spouse who has both, plus an ICD. We found out at the end of February. By the time the doctors figured out what was wrong, he was decompensated and class 4. After 12 days in the hospital and 36 pounds of fluid drain, he is now learning to cope. We are both learning to cope.
     Do you worry about that first shock? I know the feeling. On the positive side, he tells me he feels better than he has in years. When he first came home, I watched him like a hawk. I have now relaxed a bit and am concentrating more on keeping him in a healthy mode - low sodium, fluid restricted diet, exercise, etc. We take it day by day. Welcome to the board. Feel free to write me directly as well. vstuart11@hotmail.com


Heather's April 17 reply to Millie's April 16, 2002 - Hi Millie, My husband has had an ICD for 4 years now. You never really get over that fear but it lessons. My husband's ICD has discharged a total of 11 times. It is really scary to see, but you feel relieved when their heart starts beating properily again. I hope this info makes you feel not so alone. kanegordon@hotmail.com


Kelly S' April 17 reply to Amy's April 16, 2002 - Hi Amy, I can also relate to the difficulty in diet changes. I love fresh veggies and fruits, but my hubby loves the hot dogs and sausage. He does well for awhile, then he tends to slide, which doesn't help him in the long run! Any pointers on sticking to diet would be appreciated. larkel@locl.net


Barbara's April 17 reply to Millie's April 16, 2002 - Hi Millie, My husband had his ICD implanted in March of 2001. He has had 63 shocks in a year. This has not been easy on him and it scared me every time it happened. The ICD has saved his life many times. He also experienced a great deal of stress from all the shocks, so his doctor put him on Xanax to help with the anxiety it caused. My husband also has DCM. If you have any specific questions about the ICD, please talk to the doctor or call the manufacturer. My husband has a Medtronic device. Scooty59@hotmail.com


Kelly S' April 17 reply to Joyce's April 13, 2002 - Hi Joyce, I'm sure it's hard for your husband. Maybe there's a group in your area that he could link up with to help provide him with some support. You may want to check with your local hospital or clinic. I know my husband would be lost without his family or friends. Good luck to both of you. larkel@locl.net


Karen S' April 18 reply to Donna's April 5, 2002 - Hi Donna, You have hit on a subject that is especially frustrating to me - people who look at my husband and think he is fine. What they don't understand is that they don't see him on his bad days. On bad days he is at home. They don't see him when he cannot climb the stairs or needs help getting up, or gasps for breath after doing almost nothing. I was so upset when I left work on Friday that I know my blood pressure was up. My boss had been making smart comments about getting my husband a job and how good he looks. I never was sure what his point was exactly, but I need my job and it's not a job I could easily replace, so I just agreed that he looks good and went on.
     My husband just retired after being on sick leave for more than a year but his former boss used to compare his own bypass surgery to my husband's situation. There is no comparison. It makes me so angry. I try very hard not to let these people affect my peace of mind, but it's so, so hard. If anyone has suggestions for responses to people who make these kind of comments, please share them. Thanks, Karen. gstilley@hotmail.com


Jon's April 18 reply to Karen S' April 18, 2002 - Hi Karen, I have even gotten this from my doctors to some degree! Arrggghhhh! I let it pass myself but if you want to zing someone be sure they are zingable. Some people are so self-absorbed, nothing penetrates their brain cloud. These are just off the top of my head and I don't recommend anyone use them,...

Jon.


Katherine S' April 19 reply to Karen S' April 18, 2002 - Hi Karen, I have run into that same problem several times over the past year. If there is time and it is important the person have at least a basic understanding, I just explain that this is not what is called heart disease, where your arteries are clogged and you have a heart attack but that it is actually damage to the heart muscle itself, it's as though you have a broken heart/pump. I also explain there is no real way to cure this and that we have to learn to deal daily with the very seriuos symptoms and complications from the medications. That seems to help people have some understanding. kholian@metropo.mccneb.edu


Karen S' April 19 reply to Jon's April 18, 2002 - Hi Jon, Thanks for making me laugh! The next time I'm faced with that situation I'll just smile and silently say one of your suggestions, Karen S. gstilley@hotmail.com
 
Jon's note: The eating whales comment is a paraphrase of Mark Twain - the medical degree comment was actually said by my doctor


Jon's April 19 reply to Katherine S' April 19, 2002 - Hi Katherine, This one is tricky. Many heart attack survivors sustain heart muscle damage and end up with heart failure. It's the most common cause of CHF in America. Although heart disease and heart failure are indeed two very different animals, heart disease often causes heart failure. ;-) Jon.


Katherine S' April 19 reply to Jon's April 19, 2002 - Hi Jon, Good point, but in my case what I wrote is what has happened to me. I realize each case is different but I was just suggesting a possible way to respond and what works for me. Thanks for the clarification, Katherine. kholian@metropo.mccneb.edu


Beverly C's April 19 reply to Jon's April 18, 2002 - Hi Jon, Thanks for the zingers. I really never know what to say when people ask how Chuck is. The answer to me is that he is doing fine for the condition his heart is in, thanks to the medications. However, when I try to express this I get the nodding heads and responses like, "He looks great, it is good that he has recovered." No, he has not recovered! He is compensating and we live in a different world than these people know. Vent Vent Vent! Thanks, I needed that today. bcarp@cconnect.net


Roy, April 20, 2002 - Hi everyone, Mum has class 4 CHF and is well compensated at present (touch wood). We're thinking of treating her to a surprise holiday - to go from England to Canada for a few weeks. Do you think this will be okay? We're concerned that the trip may result in her symptoms recurring, especially with the flying. Any comments would be appreciated. Sending out best wishes and positive vibes, Roy. roy_karia@hotmail.com


Anita S' April 20 reply to Karen S' April 18, 2002 - Hi Karen, I can really relate to what you were saying about people thinking your husband looks healthy. My husband's own family would say that they couldn't understand why Phil couldn't go back to work when they knew people who had bypass surgery and could work. No matter how we tried to explain that the heart attack damaged the heart muscle permanently, they didn't seem to understand.
     After someone else in the family had a heart attack and heart failure, they then explained to us how this person's heart was damaged and he couldn't work. I wanted to scream. I have no idea why they couldn't just believe us, but I guess that's the way it is sometimes.
     It is frustrating, but at least we have people on this forum who understand. I think we should all order the bumper stickers and tee-shirts that Jon advertises (Jon's Note: These are no longer available, since 2003). Maybe if enough people see them, they will finally understand the problem. I will also think of one of the lines Jon gave us and laugh to myself when someone makes a remark about Phil looking so good. Take care, Anita S. dreamersila@netscape.net


Annie G's April 20 reply to Karen S' April 18, 2002 - Hi Karen, I used to agree with them and say, "Yes, Steve looks great." It's one of the frustrating parts of this disease, that he can look so much better and still have such a bad heart. I just hope the medication keeps working. annieg129@cogeco.ca


Millie, April 20, 2002 - Wow! Thank you so much to everyone who responded to me. Thank you for the e-mails. It is a relief to know that my feelings and fears are "normal." I am so very thankful that I have found this site. Jon, thank you for your dedication in informing us all. Because of your site, I had specific questions ready when we saw the specialist yesterday and now both my husband and I have answers that we needed. It is a long road ahead, but now we don't have to travel it alone. Thank you, Millie. mandrews@choiceonemail.com


Roy April 22, 2002 - Hi, I just wanted to say thanks Jon. for the link to CHF and flying. Your continued help and consideration is greatly appreciated. roy_karia@hotmail.com


Shelby H's April 22 reply to Roy's April 20, 2002 - Hi Roy, The best thing to do is to call your Mum's doctor and ask him. Everyone's circumstances are different. My doctor said that it's okay for me to travel and I love to travel and have a wedding to attend in June so this was very good news for me.
     On the other hand, traveling can be really stressful for some people and the last thing a CHF heart needs is more stress; particularly if your Mum gets anxious about flying. The doctor might be able to prescribe a mild anti-anxiety pill, so be sure to mention it.
     Also, on a long transatlantic flight, everyone (even normal people) get edema in their legs and that can be even worse for a CHF patient. Ask the doc about that too. She should try to get up and move around during the flight. Remember that when that seatbelt sign is on, you really can't get up, so taking a diuretic can be tricky. From what I've read, it's safe for many CHF patients to travel, but be sure to let the doctor know. It's also a good idea to locate a CHF specialist at your destination just in case. Shelby. :-) shelbyscout@hotmail.com


Sandy, April 23, 2002 - Hi, I've been lurking here for a couple of weeks and can't begin to tell you how much I have learned and what a support it has been. Thank you, all of you. My husband (now 52 years old) has a bad family history of sudden cardiac death. Ten years ago he had an angiogram that showed his circumflex artery 100% blocked, the rest 10%, 20%, 30% blocked.
     This past winter, he and I have traded the flu back and forth since in December. The only difference was that he would get sicker during his 3 to 5 days of illness. In November, he deer hunted and walked around 160 acres for 2 weeks with no symptoms. In the middle of January he went to the doc for the first time with a persistent cough. From then until mid-March he saw the doc 3 times, called 2 times about persistent cough, fatigue, and occasional nausea. He had two chest x-rays and a zillion in lab work. They tried some asthma stuff but that didn't work.
     To make a very long story short, he had an cath that we were expecting to end in nothing or maybe an angiplasty with stent. When he was wheeled back into the room we were told he had 90% blockage in his left main, right artery, and 100% in the circumflex. They would not allow him to leave the hospital until he had bypass. A few hours later, we were told that his EF was 15%. He never had any chest pain, just occasional shortness of breath and more fatigue than usual.
     He had the CABG on 3/28/02. He's doing quite well and recovering nicely. He's going to cardiac rehab and is seen at a CHF clinic. He's also now on Coreg (thank you, Jon!).
     The problem is me. I don't sleep well and I worry continually. I'm so afraid. I have a lot of guilt feelings that I let this get this far progressed - I'm a nurse - and I have fears that someday I'm going to find him dead. For the first 2 weeks I don't think I slept more than 2 hours at a time. Now I'm up to about 3 hours straight through. I'm back to work now, but after about 5 hours away I get anxiety worrying about how he is. This is an improvement! It used to be 2 hours!
     My question to all of you is, "How can I get past this and get on with a normal life?" Right now I feel like I'm on one of those gerbil wheels, I'm running as fast as I can but I'm not keeping up. Thanks, Sandy. sandy4014@aol.com


Roseanne S' April 23 reply to Kim S' April 12, 2002 - Hi Kim, On the advice of our CVS pharmacist we purchased the cheapest CVS brand blood pressure machine they carried. He told us to take it to the ER or to our doctor and compare results. It is amazingly accurate. The doctors look at it and laugh until they see the comparison. You do not need to spend the big bucks, Roseanne S. rschurick@seidata.com


Derald G's April 24 reply to Sandy's April 23, 2002 - Hi Sandy, Give yourself a break. Even most PCPs miss this (CHF) for quite awhile. The important point is that now "he is doing quite well and recovering nicely" and you need to get a break. Make time for yourself every day. Talk to your doctor about your stress and anxiety. If you want to help other people, you have to help yourself first. deraldg@earthlink.net


Kelly S' April 24 reply to Sandy's April 23, 2002 - Hi Sandy, You shouldn't feel guilty. My hubby was the same way. You can lead a horse to water, but you can't make him drink. The main thing is they went to the doc and now the process of getting better each day is the goal. I feel fortunate to have a great CHF doctor, CHF clinic, and also this board has helped tremendously.
     I can also relate to "looks." Larry looks okay but tires easily and has up and down days. People don't realize that on his bad days he sometimes still experiences SOB and other symptoms. Today his mom wanted him to help them finish moving. He explained he didn't feel very good but decided to try anyway. He seems to have had a fairly good day but sometimes I wonder if he pushes himself too hard to please others.
     Well, good luck all and thanks for all the info, suggestions, and just the ability to be able to vent, which helps sooo much. larkel@locl.net


Jon, April 30, 2002 - Hi everyone, I just got off the phone with my web host and we got my server working so I am back, so to speak. However, due to the number of posts that came in when my script started chucking them my way again, it may take me a few days to get caught up. I'll start on it tomorrow. Jon.


Daryl J, April 30, 2002 - Hello, I am new here and hoping someone can help me find a heart failure specialist for my father. He lives in Everett, Washington. They say his heart failure is a result of aortic stenosis and that he is too weak and old for a valve replacement. Thanks for any help. I hope there is a CHF specialist in this area. dbj@interisland.net


Roseanne S' April 30 reply to Sandy's April 23, 2002 - Hi Sandy, Take a deep breath and tell yourself one day at a time. Forget yesterday. Even the cardiologist can miss CHF. Heart failure seems to be a very sneaky thing, even in someone who has been diagnosed and has had all the tests. Last summer they were going to remove my husband's gall bladder - all the tests said gall bladder. The cardiologist said surgery was a very bad idea but his PCP and surgeon said there was no choice.
     I was called out of the room and told that he would not survive the surgery but his gall bladder is going to burst and he will not survive that either. I had to put on my happy face go back into the room and act like nothing was wrong. The day of the surgery they did one more test and decided he was holding water in his liver, which was pressing on the gall bladder causing the bad test numbers.
     The key words are "he is doing quite well." Hold onto that. Now you need to take care of you. Please consider talking to your PCP about you. You may need something just for a little while to help you feel like you can cope. Loved ones have a very heavy load. You have to do all your crying and breaking down in private. You have to be strong for them. I can't tell you how many times my husband said I could not cry or get upset because it made it worse on him. You have to take care of yourself. If for no other reason, because your husband needs you healthy. Good luck, Roseanne S. rschurick@seidata.com


Jan's April 30 reply to Sandy's April 23, 2002 - Hi Sandy, I can relate immediately to your fears and anxiety regarding your husband. I was caught up in the whirlwind of trying to find out what was wrong with my husband for a couple of months before he was finally diagnosed with CHF. He is 46 years old and had an EF of 15% as well. He was hospitalized in late February/early March and came away drained of fluid, with lots of meds and an ICD to prevent the SCD he is at risk for.
     Settling in to our new life style has not been easy but I have learned to look at it as a second opportunity to spend time with him. I found it difficult to focus at work at first, but it is getting easier now. Derald is right. Make time for yourself; it is very healing. If your spirits are up, your husband's will likely be up as well. Some people say it is just as hard, if not harder, on the loved ones but it is most important that we help ourselves so we can help our other half. God bless this board and the voice it gives us to help one another. vstuart11@hotmail.com


Annie G's April 30 reply to Sandy's April 23, 2002 - Hi, Here's another nurse who missed her husband's symptoms, and I worked on a telemetry floor at the time. Don't beat yourself up. You can't be a nurse and a wife, just one or the other - it's the rule. Your husband can't undo anything that got him to where he is now, and neither can you. Don't waste your valuable energy on "if only I had." Use that energy to help him and yourself. Go forward, not backward. Take care, Annie G. annieg129@cogeco.ca


Irene M, April 30, 2002 - Hi Jon, I've been reading your site for a few days now. Boy, I wish I found it sooner! My boyfriend Tim is in the hospital. Here's a short background of his condition. He's 52 years old and was diagnosed with CHF in 1993 at the local VA hospital. When he left, he was prescribed digoxin, captopril, furosemide, aspirin and potassium. He now takes Lanoxin, Lisinopril, furosemide and aspirin and has taken these same 4 meds for at least 4 years.
     I am a little nervous about it. He started colestid about 8 months ago and due to side affects changed it to simvistatin about 2 months ago. At that time his new PCP asked him to try a beta-blocker just to see if it helps him. She said that if at any time he didn't want to keep taking it, to go ahead and stop. He never took it and he stopped the statin due to the same side affects as the colestid.
     This is an extremely long story and I could really use some input. Instead of taking up all your space, I've provided a link to a much longer explanation of my boyfriend's situation. Right now he's in the hospital on a low sodium diet and a 1.5 liter daily liquid limit and we're not sure this is what we think should be done. I felt just like Jon said about the Lasix being a higher dose, but there's a concern about his kidneys. Thanks for any advice or help on this. See http://www.surplus-electronics.com/CHF.doc for more. Irene. itsadotcom@netscape.net


Karen S' April 30 reply to Sandy's April 23, 2002 - Hi, Thanks to all who responded to my earlier post about responding to people who think that because he looks good, he is good. Your responses really made me lighten up. Once again, it just goes to prove that knowing others share your experiences makes it easier.
     Sandy, I have really been in your shoes. My husband had emergency surgery on 1/2/01. I think you are at a disadvantage when it's emergency surgery because you don't have time to prepare emotionally or physically. I know I went into it blind. You may know more since you are a nurse. When my husband first came home, sometimes I just knew he was going to die. When I went to sleep, the first thing I would do when I woke up is make sure he was breathing.
     Little by little he improved. I still sometimes look at him to see if he's breathing and get anxious if he's not up when I get up or doesn't answer the phone when I think he should, but it's a whole lot better now. Part of it is that they do improve and the other part is that you get used to the situation. What is "normal" now is significantly different from what was normal before.
     As far as guilt and worrying, you waste time and energy worrying about things you have no control over. You have no reason to feel guilty. When you start to worry, try to catch yourself and remember that you're wasting your valuable time and energy. I usually take some over the counter medicine to help me sleep, although not enough to really knock me out. You'll get through this with time and it really does get better. This site is a great place to be for support and information, Karen. gstilley@hotmail.com


Maria's April 30 reply to Sandy's April 23, 2002 - Hi Sandy, Please do not torture yourself. Your husband made his own choices about how he has handled his health issues. Unfortunately people tend to let health issues get to a crisis stage before they react. Denial is powerful.
     I'm sure all the caregivers who use this site have experienced the same feelings of guilt and fear that you are now dealing with. I believe this a normal part of the process of accepting what has happened and figuring out how to move forward from here. You have both been affected by this. As the saying goes, "This too shall pass."
     Try to take care of yourself. Go for walks or do something you like, to help relieve the tension. Go out with your girl friends. It is hard but it does help. If the anxiety is really too much, think about some professional help. Even though you are a nurse by training, it is traumatic when it happens to a loved one. All my best to you and your husband. kmmcf@vineyard.net


Peggy's April 30 reply to Sandy's April 23, 2002 - Hi Sandy, All of us caregivers know how you feel. We have all gone through this and it does get better. Sometimes it takes longer than others. I agree that you need to take care of yourself. When my husband was diagnosed with DCM and CHF in November of 2000, I was an avid exerciser who went to the fitness center every day. When he got sick, that was the last thing on my mind and I gave up completely for a whole year and just let myself and my self esteem go! What a mistake!
     I felt taking care of him was more important than my health. I became depressed and he ended up helping me, along with being sick. I still worry every time the phone rings at work or at home but I know I need to take care of myself also. I'm back to working out every day and it helps me a lot. It takes the stress away. Also, read here every day and you will know you are not alone, Peggy. RyoungAngora4683@aol.com


Nancy S' April 30 reply to Millie's April 16, 2002 - Hi Millie, I also have an ICD and am 50 years old. I was diagnosed at age 48 and was totally blown away. Nobody on either side of my family had any heart disease until they were at least in their 80s and then not CHF unless it was at the end, when their entire bodies were worn out.
     It's a very frightening thing to realize that you could possibly die at any moment. I got my implant in October of 2001 and now it's been 6 months, and I can't believe how good I feel most of the time. Mine hasn't gone off even one time so far and I hope it never does. What I am trying to tell you is that I understand his feeling old because I did too until the last few months. I also felt very sorry for myself. Now I feel like me again and that's the most wonderful feeling in the world for someone who has been where we were before.
     I hope that he too will feel better and better, and that you don't worry when he laughs hard because that means he's happy and that he isn't dwelling on his health at that moment, so you shouldn't either. Hopefully, those times will get closer together and the worry further apart. I hope I made a little sense. If I can help, feel free to e-mail me or address me here. I try to read here at least once a week. Good luck and God bless you both, Nancy. ns1@alltel.net


Susan, April 30, 2002 - Hi, I learned today that my 78 year old mother in law has diastolic dysfunction. She had a stent inserted 2 weeks ago but has seen no relief. In fact, she is worse now than ever. She cannot take 5 steps without gasping for air. She has a lifetime of asthma, which probably complicates things. She has been on Lasix twice daily without results so now they have her on zaroxolyn, followed by Lasix.
     She just seems so sick and I am not sure how serious this is or what kinds of steps we should take. Will she get better or should we plan for in-home nursing care? She is also very poor so I know we will need lots of time to evaluate the options available to her with her limited resources. I don't want to depress her by looking at alternative living arrangements but I want to be able to move quickly if she needs assistance. I just really don't know what to expect or what her prognosis is. I don't know if her out of state children should come visit now or if that would be an hysterical response on my part. Can someone tell me what her future might look like? susan@artworksnet.com


Phyllis E, April 30, 2002 - Hi, Good news. We are leaving to go for my husband's cardioversion to see if they can get his chronic atrial fibrillation back to normal rhythm. He is okay from 4 years of CHF. His EF has improved from 15% to 70% and his heart is no longer enlarged thanks to meds and I think CoQ10. Also, he was approved for SSD after 1 1/2 years, out of the blue. Go figure. It is in the Lord's hands. I will let you know if he gets this a-fib under control, Phyllis E. phernsberger@peoplepc.com


Penny, April 30, 2002 - Hi, I just read something about cholesterol-lowering drugs lowering the CoQ10 in heart muscle and also that beta-blockers do the same. Has anyone tried CoQ10 supplements and experienced improved symptoms for CHF?
     My dad is taking an ACE inhibitor, sotolol, and pravachol for his CHF. This started with exreme rapid heart beat last summer. He now has a pacemaker and defibrillator impanted. pxe3@po.cwru.edu


Tom R, April 30, 2002 - Hi, I am an registered nurse working for a company called Vasomedical. We are conducting a study designed for patients with heart failure on EECP. After conducting a successful saftey study with heart failure patients, we are now conducting a larger study to determine how effective EECP might be for heart failure patients. We are still enrolling patients for the study in many major metro areas including New York, San Diego, Miami, Cleveland, Houston, Chicago, Phoenix, and many other cities across the US.
     If you or someone you know is interested in participating and has an ejection fraction of 35% or less, please contact me at thomasriedman@yahoo.com. I have a lot of confidence that EECP can and will help many people with heart failure, just as it has patients with angina. Best regards, Tom Riedman. thomasriedman@yahoo.com


Jon, April 30, 2002 - Hi everyone, Well, those are all the posts I have on hand for caregivers and loved ones. If you posted one and it isn't here, it got permanently lost in the technical black hole I was lost in the past 5 days. I am very sorry to anyone who lost a post and can only ask that you repost. Jon.


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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