The paperwork never ends The Archives
Loved Ones - March, 2002 Archive Index

Eileen 3-5     how to get his mind off his mortality?
Mike W's 3-6 reply to Eileen's 3-5     dealing with thoughts of mortality
Veronica 3-7     question about heavy sweating
Judy 3-8     seek Florida heart failure clinic
Donna H's 3-8 reply to Eileen's 3-5     husbands worried about mortality & more
Jon's 3-8 reply to Aida's 2-26     I would treat this seriously
Jon's 3-8 reply to Veronica's 3-7     sweating and CHF
Bill C's 3-9 reply to Jon's 3-8     profuse sweating & more
Davida S' 3-9 reply to Judy's 3-8     check for university hospital
Jan S 3-11     what else can I do from a distance?
Andy 3-11     dad's transplant wait - close call
Debbie J 3-11     husband in hospital, I am losing it
Kim S 3-11     seek pacemaker experiences
Jeff S 3-11     how do I find the best doctor?
Jon's 3-11 reply to Jeff S' 3-11     finding a CHF doc
Jon's 3-11 reply to Debbie J's 3-11     caths and kidneys
Karen 3-11     seek info on CHF
Carol H 3-11     nausea questions & more
Jon's 3-11 reply to Carol H's 3-11     nausea possibilities
Jon's 3-11 reply to Karen's 3-11     CHF info and prognosis
Davida S' 3-11 reply to Jeff S' 3-11     CHF doctor reommendation
April 3-14     how did this happen? & more
Davida S 3-15     seek help about husband's new symptoms
Davida S' 3-15 reply to April's 3-14     coping after first diagnosis & more
Susan B's 3-15 reply to April's 3-14     coping after first diagnosis & more
April C 3-16     thank you & an update
Jon 3-16     do you want this forum?
Suzy C's 3-16 reply to Jon's 3-16     vote for the forum
Anita S' 3-16 reply to Jon's 3-16     vote for the forum
Susan B's 3-16 reply to Jon's 3-16     vote for the forum
Karen F's 3-18 reply to Jon's 3-16     vote for the forum
Annie G's 3-18 reply to Jon's 3-16     vote for the forum
Barbara's 3-18 reply to Jon's 3-16     vote for the forum
Mike W's 3-18 reply to Jon's 3-16     vote for the forum
Kim S' 3-18 reply to Jon's 3-16     vote for the forum
Jon's 3-18 reply to Kim S' 3-18     pacemaker patients
Peggy's 3-18 reply to Jon's 3-16     vote for the forum
Jon's 3-18 reply to Peggy's 3-18     directing traffic here
Kim S' 3-18 reply to Davida S' 3-15     heart rhythm disturbances
Karen S' 3-21 reply to Jon's 3-16     vote for the forum
Davida S' 3-21 reply to Kim S' 3-18     stress
Debbie J's 3-21 reply to Jon's 3-11     Tom died, and more
Carl H 3-22     prayer request
Beverly Carpenter's 3-23 reply to Debbie's 3-21     thank you & more
Sandy H's 3-23 reply to Jon's 3-16     vote to keep forum
Nancy S' 3-25 reply to Kim S' 3-18     pacemakers
Suzy C's 3-25 reply to Karen S' 3-18     vote for the forum
Jon 3-27     back soon
Norma Stewart 3-27     vote to keep forum

Eileen, March 5, 2002 - Hi, My husband is 54 and was in really good health until his CHF was making his life quality poor. He had bypass surgery 15 years ago. His arteries are completely open at this time and he is living a pretty good quality of life. His EF was 10% at first diagnosis. He blames his condition on stress and emotional stress that he put himself through last year. Since his life has calmed down, he is much better He just had a successful cardioversion and has come to accept that he will be on meds for the rest of his life, which brings me to the part he constantly worries about - his mortality. Does anyone have any ideas on how to get past that and live? Thanks for your input, Eileen.

Mike W's March 6 reply to Eileen's March 5, 2002 - Hi Eileen, I have no wise words to offer. I'm from the other side of the board and have CHF. I'm 54 and that journey is the most individual that all of us must make. For myself, getting sick 4 years ago was the first time that my mortality became very, very real. I've come to terms with it pretty well compared to when I was first diagnosed. I was dwelling on my death constantly for the first two years, but as my condition remained stable, I slowly became more calm. I do believe that when mortality does become real to someone, whether it's at 23, or 54, or even 70+, I don't think one is ever really the same again.
     As far as what you can do for your husband, just keep on loving and supporting him like you're doing now. If you're able to, talk to him openly about his (and your) feelings about death. He might calm down about it or not. Like I said, it's about the most individual thing we humans have to deal with. Peace, Mike Wafkowski.

Veronica, March 7, 2002 - Hi, Could anyone tell me what causes someone with CHF to sweat profusely even when he is not hot? My boyfriend was diagnosed in August of 2001 with high blood pressure, which he has had for 15 years with no medical attention. Thanks, Veronica.

Judy, March 8, 2002 - Hi, I am interested in locating for a friend a CHF clinic near Okeechobee, Florida. It does not have to be in Okeechobee, but she would like it to be within 100 miles. Is there anything like that at the Cleveland Clinic in Fort Lauderdale or near that area? Thanks, Judy.

Donna H's March 8 reply to Eileen's March 5, 2002 - Hi Eileen, My husband is the same way. He was scheduled for a heart cath on Wednesday and on Tuesday I heard him tell someone, "If I am alive on Friday,..." I have tried talking to him about it but he is quick to anger so I don't bring it up very often.
     For a short time he was on Celebrex and I thought it improved his general outlook but he dislikes taking so much medicine that he quit taking it. If I can talk to his doctor alone, I am going to see if he will encourage him to take it again. Is your husband on any kind of an antidepressant?
     After the heart cath, the doctor told me that my husband's EF was up to 40%. The doctor thinks the Coreg has helped because a month ago his EF was 30 to 35%. He is still in a-fib almost constantly and that worries him, even though the doctors said we shouldn't worry about it. This was his third heart cath and they have never found any blockages, just a weak heart muscle and a slightly leaky mitral valve.

Jon's March 8 reply to Aida's February 26, 2002 - Hi Aida, There is a thing called cardiac cachexia, and this may require intervention by his doctor. I would be concerned that his doctor is not worried about this weight loss, if it was really sudden and dramatic. That can signal cachexia, fluid retention in the gut intefering with digestion, or as you noted, a serious reaction to an incorrect combination of meds.
     I would get a second opinion. Yes, I would - if it were me. I am not a doctor and can only give my opinion. In my opinion, this is serious enough to get correctly identified and treated if necessary, even if that means changing primary care doctor and CHF doctor. I would be careful about exercising until this problem is properly identified. Jon.

Jon's March 8 reply to Veronica's March 7, 2002 - Hi Veronica, If anyone does know the answer to this, I'd love to hear it! I can't tell you how many threads have surfaced through the years here about profuse sweating that occurs just before diagnosis and periodically afterward. It may just be part of CHF but I've never seen a decent explanation. I can only tell you that it is not uncommon. Jon.

Bill C's March 9 reply to Jon's March 8, 2002 - Hi Jon, Well, this is not my explanation to the profuse sweating but what I was told by my daughter's cardiologist. The sweating occurs due to the adrenalin released when in CHF, and something about increased metabolism of the body's cells. We were to call him and take her to the ER if she had the sweating and any SOB or fast breathing. She is doing excellent now since the VSD repair, praise the Lord. Thanks very much for all that you do here, Jon. I hope you improve, our prayers are with you. Bill C.

Davida S' March 9 reply to Judy's March 8, 2002 - Hi Judy, Check with local cardiologists to find out where the nearest university hospital is. They usually have a CHF clinic. One or more local cardiologist would probably be familiar with such a clinic.

Jan S, March 11, 2002 - Hi, this is my first time posting. My father was diagnosed with CHF in September, 2000. He also has high blood pressure and high cholosterol, which was diagnosed after the CHF. My father is 65 and until September of 2000, he was a very healthy-seeming man with no aches or pains, no meds or doctors. Now he is trying to cope with the daily meds treatment, the regular doctor visits and the blood work, and this all seemed to be working until recently.
     Now his cholesterol is too high and if he stays on his feet too long the swelling starts. I know he is tired of all this and can tell from his voice and the way he talks that he is ready to give up. I want to help but I live 900 miles away from him. I visit more often, we e-mail at least every other day and we talk on chat or the phone. What else can I do to help him through this? I am daddy's little girl still, at age 41.

Andy, March 11, 2002 - Hi All, I've been helping my father get a new heart for the last few months. He was finally added to the list on February 1, 2002. We have had many ups and downs over the past few years but yesterday was the worst. He had CHF yesterday morning and we thought things were at their worst. About an hour later we were informed that a heart was available but it was about 200 miles away. Everything matched up perfectly. Unfortunately we were getting winds up to 60mph so the helicopter could not take off to retrieve the heart. So close, yet so far.
     Well, he has been moved up to A1 and will recieve the first heart available that matches (in our state). Otherwise he gets an LVAD. We have two days before the LVAD must be implanted. He is on a balloon now (intra-aortic balloon pulsation) and they can't keep him on that for too long. He is scared of getting the LVAD since it is a major surgery and will drop him down on the recipient list. I'm hoping a heart becomes available but will be happy to see him stabilized on an LVAD.
     Anyway, I just thought I would share our close call on getting a heart. I've been told that most patients have at least one false alarm before receiving a heart transplant. Also, thanks to all who post messages here. This site has been a great source of information!

Debbie J, March 11, 2002 - Hi everyone, My 59 year old husband has been in the hospital for 3 weeks. He already had a-fib, CHF and is 17 years post-bypass. Apparently his aortic valve is stenotic (calcium). It was causing kidney disfuntion, plus he had MRSA in the wounds from tissue breakdown in the legs. His kidneys started to recover and then he had a heart cath, which caused acute renal failure. This was reversed by dobutamine and albumin. He is still on dobutamine and dopamine to keep his blood pressure up and kidneys working. What a mess! They are trying to tune him up for aortic valve replacement.
     Now he has pnuemonia from lying in bed for 3 weeks. He has been in the hospital for 3 weeks after spending 7 days in cardiac ICU. I am about ready to lose it. He is still fighting, awake and alert, but is confined to his room due to the MRSA. Debbie Jones.

Kim S, March 11, 2002 - Hi everyone (and thanks, Jon!), The latest news from my mom's cardiologist was not great. Her EF has only increased to 25% after 4 months of meds, exercise, and low-sodium diet. The doctors are recommending biventricular pacing. We've read the pacemaker page but mom was hoping someone could share their personal experience with the procedure and outcome. Any info would help with our anxiety! Thanks so much, Kim S.

Jeff S, March 11, 2002 - Hi, How do you determine the qualifications of a CHF specialist? My wife was just diagnosed at age 40 and I want to find her the best doctor on the East Coast or even in the nation. Other than asking her cardiologist for referrals, how do we find out who is the best? Thanks.

Jon's March 11 reply to Jeff S, March 11, 2002 - Hi Jeff, I go into this in some detail on my CHF specialist page, so be sure to read that. This is mainly a common sense matter, as strange as that may sound. Does the doctor belong to HFSA? Is he board certified in cardiology? Is he FAAC? Is he a published CHF researcher? Is he an active clinician? (meaning, does he treat patients all day long) Many of "the best" docs on paper are now more administrator than doctor because they climbed into positions that limit the time they can spend on patients. They can get rusty, so to speak. You can read up on these terms on the CHF doc listing - click on "Terms explained" to go to the bottom of the page.
     However, the main thing is to get the right doctor for her , not just a doctor who is a set of certain paper qualifications. Trust me, just going by a set of "specifications" rarely works out for the best in a field as full of varied ideas and patients as heart failure treatment.
     The only 2 doctors I can personally recommend are Marc Silver at Christ Medical Center near Chicago, Illinois; and Charles Porter at Mid-America Cardiology at KU in Kansas City, Kansas. You will not go wrong with either of these doctors. If she needs a heart surgeon, I can only recommend Patrick McCarthy at Cleveland Clnic in Ohio. Jon.

Jon's March 11 reply to Debbie J's March 11, 2002 - Hi Debbie, I'm sorry to hear of your husband's struggle, and yours. I just wanted to say - for others' sake who are reading the posts - that you probably mean the dye used in his cath procedure aggravated his kidneys, not some other part of the procedure. Jon.

Karen, March 11, 2002 - Hi, This is my first time here and I am so happy I found it. My grandfather has CHF. He had a quadruple bypass 10 years ago and seemed to be doing well. He has recently gotten worse than we have ever seen. He was just hospitalized last week and they put a pacemaker in. They set the rate at 60 but have since upped it to 75.
     My grandmother is having such a hard time. My grandfather is in his late 70s and she was wondering what some of the symptoms are, and how long can he go on. He has stopped eating, won't take the meds correctly, and doesn't do the physical therapy. Does anyone know if there is a web site or somewhere I can call to get this information for my grandmother? Thank you so much, Karen.

Carol H, March 11, 2002 - Hi, My father was just diagnosed with CHF a few weeks ago. He has been home for 2 weeks and is getting increasingly nauseous. Is this a side effect of the drugs? What questions should my mother ask the doctor? Now he has stopped eating because of the nausea. I live long distance and feel very worried. I'd appreciate any advice somebody has. Thanks.

Jon's March 11 reply to Carol H's March 11, 2002 - Hi Carol, Nausea can be a side effect from digoxin (Lanoxin), or less often, ACE inhibitors. It can also come from CHF itself, although I have never seen a doctor fully explain why. Jon.

Jon's March 11 reply to Karen's March 11, 2002 - Hi Karen, I'm not sure if you are asking for specific information on how long he will live or for CHF info and symptoms in general. This site is a pretty good place to start on the latter. Start here. As for prognosis, it is highly individual. The only online information I have seen predicting prognosis I consider to be inaccurate and quite misleading, so I don't point people to it. I am sorry but it depends on so many factors I can't even begin to guess. Jon.

Davida S' March 11 reply to Jeff S' March 11, 2002 - Hi Jeff, I recommend Dr. Michael Hess at Medical College of Virginia. He has been a miracle worker for us and MCV Hospital also is a transplant hospital. When we asked around here, all roads led back to Dr. Hess as the nearest and best CHF doctor. He gave us our second opinion regarding transplant surgery, which he did not recommend. We even had to consider it at the time, when all others said transplant was in our very near future. He often admits he is not in this alone, that it includes the patient and the Man Above as he puts it. Good luck.

April, March 14, 2002 - Hi, This is my first message here. My mother went to the hospital Monday at 5:30 straight from the doctor's office. She is about to be 77 years old. They thought she had tracheitis, bronchitis and then pneumonia. Tuesday morning at 8:00 her heart stopped and she was shocked 3 times. She is now in ICU.
     She has been diagnosed with cardiomyopathy and congestive heart failure with arrhythmia. Her arms and legs are very cold. She is not doing well. Nobody wants to say what her prognosis is. They just say she is not out of the woods and that they are trying to keep her alive at this time.
     It is so confusing because when I see her, she talks and sounds so normal. How could this just show up without any warning and no history? Is this end-stage CHF or just how it starts. Could she be treated with meds and eventually go home? They said she is not a candidate for a ICD at this time. Thanks, April.

Davida S, March 15, 2002 - Help, help, help, My 37 year old husband - after doing very well - in the last 2 to 3 weeks has been experiencing angina-like symptoms. Also, he gets the pounding heart at rest. He is tired and was given a Holter monitor today for 24 hours. While washing dishes he experienced the symptoms today and on his walk. The last day or so he has been very tired. His last EKG was normal and the doc says his heart sounded good. These symptoms include pain in his legs and neck. His symptoms get better with rest. This is scary and frustrating. The intial cause of his CHF is suspected to be viral, since cath at the time 2 years ago was good when the CHF showed up. His last EF measurement in June was in the 50s. Please write if you have any ideas. His meds are Aldactone, amiodarone, Lasix, Cozaar, aspirin, Prilosec and CoQ10. Thanks.

Davida S' March 15 reply to April's March 14, 2002 - Hi April, It is not unusual to start as you described. Sometimes what looks like a cold or flu can be wrecking havoc on the heart. My husband was similar. At age 35 he could not shake flu-like symptoms that escalated into pneumonia. He went to the doctor's 3 times in one month and on the last visit he was in heart failure and went straight to the hospital and was there for 3 weeks.
     At least your mom is talking. My husband was so weak they did not want him to talk due to the strain. He stayed in the Critical Care Unit for 2 weeks. Ask the doctor's what her EF is. My husband's had gone into the single digits per the doctor. Her legs and arms will be cold since the heart is not getting enough blood to her extremities. When my husband would get in bed at night, his legs and feet were ice cold.
     It is hard to say what the prognoisis is. It is unpredictable. It was the same with my husband at the time. He is doing much better now. Meds are very helpful and if she responds to them she will be sent home with the meds but it is a slow process, especially since it sounds like she may have pneumonia also, which needs to be treated.
     Pray and I will pray also. Keep her spirits up and pray for strength. I know the stress you are feeling and it is awful. You feel helpless and it seems hopeless but many people on this site will testify there is hope.

Susan B's March 15 reply to April's March 14, 2002 - Dear April, I am so sorry that you and your family are going through this. However, you are at the right place. Stop and take a deep breath and get ready to study CHF as if your mother's health depends on it, because it may. Read The Manual. It is the best place to start. Take notes because you are likely to be in overload and will forget a lot of what you read. This is normal.
     Cry, yell, scream if you need to, as you start to process the information. These are normal reactions. Cardiomyopathy is often missed by doctors who don't see it every day. Remember that doctors don't know everything and they cannot know everything. It is just not possible to have that much information in your brain.
     Your mother needs a CHF doctor. Jon has a list of them on this site. They are better able to treat your mother. You also need to find the right doctor for her; one that takes time to listen and talk to her so that she can get as well as possible. You need to start asking questions to be able to assist your mother. What is her EF? What drugs are they using to treat her? What is the treatment plan?
     It was a year ago this month that a nurse blurted out that my husband had CHF. He still looks too good to be sick but he had an EF of 15 to 20% at the time. He now has an EF of 25 to 30%. He still wants to go back to fighting fires for a living but at the doctor's office this week he passed out from standing up too fast. I pushed him against the wall to hold him up while the little bitty nurse offered to get him a wheelchair. He still would not slow down, when for a week his oxygen was 81%. His fingers and lips were blue and I could not stop him from taking the dogs to the groomer so that he could rest.
     People with cardiomyopathy may not look sick yet be very ill. She may have been living with the illness for awhile and not even have known how sick she was. Please get all the information you can, so you understand what is going on. Knowledge is power. Good luck and our prayers are will you, Susan B.

April C, March 16, 2002 - Hi, Thank you both so much for replying. In talking to the doctor today, he said she will be in ICU at least another 2 weeks and then possibly rehab at the hospital. They won't send her home until she is strong enough to have the defibrillator implanted. My brother is a preacher in Waco, Texas and he has a CHF specialist named Dr. Rodney Brown, who will do the surgery. We live in San Angelo, Texas. We know she is not out of the woods yet but it is beginning to sound like the doctors have hope. Her spirits are up. Praying is what we have all been doing and it seems like a miracle at this point. Thank you.

Jon, March 16, 2002 - Hi everyone, I have always assumed this forum was of some use even though the traffic is understandably less than on the CHFer's side of the message board. I assumed this because people told me so. I now have a person harping on me without mercy about the lack of traffic here and claiming it is somehow my fault, so I am asking straight out, do you want this forum to stay available - yes or no?
     Awhile back, I asked everyone if the forums should be merged and I received a resounding no, so that won't happen - most people obviously don't want it merged. If you do want this forum to stay up, please say so. Thanks for your input, Jon.

Suzy C's March 16 reply to Jon's March 16, 2002 - Hi Jon, Yes, we need you. If the traffic is light then that means everyone is okay - I choose to be an optimist. The CHF site, I always assumed, was for the person with the disease, although I have posted in both places. The rest of us need to share a lot since we take care of them. I use the site, thank you and bless you. Suzy C.

Anita S' March 16 reply to Jon's March 16, 2002 - Hi Jon, I definitely want this forum to continue. I always plan on responding to people on the forum, but something always seems to come up. That doesn't mean that I am not interested in what is going on in the posts. Now I have some health problems of my own and just can't seem to get much done.
     You know what is best on how to handle this site, so stick to what you know is best. You've been right so far. Thanks for all that you do for us and thanks to all the people who take the time to answer the posts here. We need you and them. Take care, Anita.

Susan B's March 16 reply to Jon's March 16, 2002 - Hi Jon, Please keep it up. No, we don't write as much as the CHF side but as you have said before, messages sometimes get answered directly (e-mail) and not posted. You have done nothing wrong. I work 6 days per week and go to every one of my husband's doctor's appointments.
     I sometimes have things too personal to put on the board or don't write because someone else has already said what I would have said, or I don't want to hog all the board space just repeating the same message. I consider this board part of my support system. I have over 700 clients and I give out the web address about 3 to 10 times per week to clients, to friends and family, and to strangers in doctor offices, and even at the store. I even gave the address to the nurse at my husband's former heart doctor's office.
     Please don't give up on us just because we don't write as much. From what I have learned here and the direct e-mails, we are holding down jobs and taking care of sick friends and family. Susan.

Karen F's March 18 reply to Jon's March 16, 2002 - Hi Jon, I am a poster on the other side but I want you to know that I read this side every day as well. Sometimes, when I feel I can contribute something productive, I respond to posts on this board in e-mail. What I really use this forum for is to understand what the caregivers are feeling and thinking. I think many times the people around me don't want to share their true concerns and worries because they are afraid about how I would react.
     Although I've given this url to them, they are not the types to use internet forums. So by reading what other caregivers are concerned about, I have been able to open conversations with my caregivers on specific subjects that might never have otherwise occurred to me to talk about at home. Thanks for all the work you do, Karen F.

Annie G's March 18 reply to Jon's March 16, 2002 - Hi, I read almost every day but only post once in awhile. I know you are not stopping posts from happening. I rarely post but always read. I get most of what I need from that or from the other areas of your site. Sometimes I wish the two sides could be merged, but I think that both sides need to feel they have freedom to express some things that they may be reluctant to say if they felt there was a wider audience.
     Anyway, for 3 1/2 years your site has been a life saver. By finding you at the beginning of my husband's illness, the info I got here was what I needed and helped us make informed decisions. Thank you. Hopefully all the readers will post. Thanks, thanks, thanks, Annie G.

Barbara's March 18 reply to Jon's March 16, 2002 - Hi, This forum is important to all who read it. Even though I do not post a lot, I read both sections every night. I vote to keep this forum going.

Mike W's March 18 reply to Jon's March 16, 2002 - Hi Jon, As you know, I'm from the "other side" but I read this forum every day too, and recently posted a response here. Keep this board going if possible. It's easy to criticize but a lot harder to do as you have been doing for so long and so well. Regards, Mike Wafkowski.

Kim S' March 18 reply to Jon's March 16, 2002 - Hi, I'd like to register my vote to keep this forum as well. There are issues and questions raised here that are more specific to caregivers, and I would feel reluctant to use up time and space on the CHFers' side.
     I was a little surprised and disappointed that I didn't receive any replies to my question about others' experiences with biventricular pacing. I assumed that there aren't many people out there who have had this procedure, or they don't read or reply to the caregivers' forum. I keep encouraging my mom to write in herself but she doesn't have any spare energy at work and doesn't have a computer at home.
     Anyway, I've found this site to be a wonderful source of support in the past few months and definitely would hate to lose it.

Jon's March 18 reply to Kim S' March 18, 2002 - Hi Kim, I only know of 3 readers total who have had a biventricular pacer, so they are few and far between. Jon.

Peggy's March 18 reply to Jon's March 16, 2002 - Hi Jon, Please keep this going. Just like everyone else, I read every day and post when I feel like I can help or have a question. Although I have noticed that when I have a question it usually doesn't get answered over here all the time. Maybe we can ask everyone on the other side to look over here to see if they maybe can help when we have a question. I have no idea how many people look over here from the other side. Thanks, Peggy.

Jon's March 18 reply to Peggy's March 18, 2002 - Hi Peggy, When the question of 2 forums was last raised, it was overwhelming in favor of keeping the forums distinct. The one thing I did at that time was put the little feller pointing with a message to visit this side at the bottom of the last post every day. Clicking on him takes you here. I hope it has helped, but there's not much more I can do. Jon.

Kim S' March 18 reply to Davdia S' March 15, 2002 - Hi Davida, You probably know much more than I do about all this, but I'll give you my thoughts about your question. My mother was also having strange episodes of heart pounding and racing, and wore the monitor for awhile. The doctors couldn't really give her an answer but she noticed that it usually happened after eating a spicy meal. That doesn't make much sense but that's the only answer she came up with. She was really spicing her meals to make up for the lack of salt, so now she's also cut back on the spices and hot peppers.
     The other thing the doctors have found though, is that her ventricles are not beating at the same time, so they're referring her for a biventricular pacemaker to help her heart beat more like it's supposed to; but with your husband, that would have been found on the EKG, right? Hang in there and keep us posted.

Karen S' March 21 reply to Jon's March 16, 2002 - Hi Jon, I also would like very much to see this message board remain. Most of us are extremely busy. This is the first day I've had time to look at the board since you posted on March 16th. I work a minimum of 10.5 hours per day, 5 days per week, go to doctor visits with my husband whenever possible, take care of the insurance filing, insurance problems, Social Security paperwork, bill paying, medication purchasing and distribution, taxes, household chores and now the yard work that my husband can no longer do. I'm always glad when I have time to check the boards and I have learned a lot here. Thanks for all your time and efforts put into this site, Karen S.

Davida S' March 21 reply to Kim S' March 18, 2002 - Hi and thanks for the reply, Kim. I thought maybe his could be related to acid reflux or the Prilosec he takes. He started eating earlier in an effort to ease his symptoms. Per the results today from the Holter moniter there is absolutely nothing wrong with my husband's heart. He even had the chest tightness, shortness of breath and pounding heart beat while on the monitor. His heart is in great condition. This goes along with the fantastic EF he has and the past months. The final diagnosis stress or anxiety. Go figure.
     Obviously, I haven't noticed reasons to be stressed or anxious but it makes way too much sense now since he is attending classes at 2 schools and had exams at both schools with 3 papers due, exactly one week from when the symptoms first showed up. In addition, he was trying to be Superman around the house. It's the oddest thing. His symptoms eased up over the days after the exams so needless to say, I have suggested stress management classes maybe in the summer, once the regular school year is over. He has agreed that he needs some guidance.
     He was convinced he was going downhill so that didn't help his mentality. It sort of made him act sicker because he had convinced himself he was. One night he could barely walk up the stairs and had to rest, and felt faint when he reached the top. I had to help him get dressed for bed. The mind is a funny thing.

Debbie J's March 21 reply to Jon's March 11, 2002 - Dear Jon and all, I did mean that the dye caused the acute kidney failure but that was due to his compromised kidney function and not the test itself.
     Tom passed away on March 18 at 2:30 AM. His aortic valve was shot and he had developed pulmonary hypertension. His pulmonary presure was 75% of his blood pressure (supposed to be only 15%). His ejection fraction had dropped to 15%. He had been supported for 2 weeks on dopamine and dobutamine and the last day his BUN level shot above 100 and they had to do dialysis. While we knew the risks, I had to give him a last shot. Three hours after this his blood pressure, O2 levels, BP and heart rate had dropped to levels that do not support life.
     I was in the room and managed to sleep through this although I think they were being very quiet in trying to reverse the situation, until they knew death was inevitable and woke me up to talk to the doctor. He was actually on a full code status, but I asked them only to try till his older kids got there, which took about 7 minutes and then told them to stop. We still have and 11 and 12 year old at home. He was right with Jesus and today I feel that it was a blessing he is no longer suffering.
     A note to everyone that reads this: Tom had many multiple complications with his CHF due to his diabetes, plus he had strep bovis in his blood, which may have finished off the valve. I found out today from his sister that he had also had rhuematic fever as a child. There was also some serious endocrine issues going on that we could never quite pinpoint. So please do not think that this is the norm for everyone with CHF. Also, having a cath will not necessarily shut down your kidneys from the dye. He had kidney dysfunction due to his aortic valve not pumping enough blood to the kidneys. He also had cellulitis twice in 3 months and had been on massive amounts of antibiotics since November. Debbie Jones.

Carl H, March 22, 2002 - Hi, This is a prayer request. I'm asking that Carol McLaughlin be held up in prayer. She's currently being evaluated for a heart transplant in an ICU unit in Portland, Oregon. She's been in the hospital for 3 1/2 weeks awaiting first a medical decision and then with God's will, a heart. Carol's a K-12 school classmate of mine and she's strong in Christ. Please be in prayer for her as well as her husband and daughter as they go through this trial with her.
     I know she would love to receive cards and well wishes, so here's an address: Carol McLaughlin, ICU patient, HSU Hospita, 3181 SW Sam Jackson Park Rd., Portland, OR. 97201
     No phone calls please. In Christ's love, Carl H.

Beverly Carpenter's March 23 reply to Debbie's March 21, 2002 - Hi, This is my first post but I read the messages at least 2 to 3 times a week. My husband was diagnosed with CHF the first of November after a lot of problems with breathing and congestion, which were thought to be COPD. Of course after reading all the rest of the messages I realize this is a common occurence with CHF patients. His EF at the time of diagnosis was 20 and since we had no idea of the problems he had. It was a real shock.
     I just really wanted to tell you Debbie, that you are in my prayers. I personally appreciate very much your posting the information about your husband's death and his illness. God bless you.
     My husband is doing much better thanks to his CHF doctor and his meds regimen. Thank you Jon, for this site. It has answered many questions and concerns. I feel so much less alone.

Sandy H's March 23 reply to Jon's March 16, 2002 - Hi, This is a late vote but my vote would be to continue the caregivers' forum. I don't post much but it is a comforting feeling to know that I have a place to go if I need to talk to someone and I always read everyone's posts. Sometimes we may know the answer to our own questions so we aren't really expecting someone to anwer, but maybe just want reassurance that we aren't alone in our concerns for our loved ones.
     We all have different scenarios as to the way each person handles CHF. It is dependent on their personality and their life style. However, being able to post, whether there is a lot of activity at the site or not, makes me feel like I am connected to someone who knows what I am going through.
     I originally thought my husband had nowhere to go but downhill, but after visiting your site and listening to other caregivers talk here I realized that there is a lot of life left for my husband. My prayers are with all the families who post and read here.

Nancy S' March 25 reply to Kim S' March 18, 2002 - Hi Kim, I first want to apologize for not responding to your questions about the biventricular pacer.
     I got mine 10/25/02. I was first diagnosed in 10/2000, I think. There goes that memory thing! I had some pretty serious problems but the cardiologist that I was going to didn't really give me that opinion. He acted like it was no big deal. Anyway, I am now class 3 and have had the implant.
     Now I am going to a CHF specialist and feel much better about the care I'm receiving. I went to the hospital at 5:00 AM and the implant was done at 7:00. The doc told my family that it would take from one to 3 hours but mine ended up taking about 5. He explained to me that they would thread the three leads through my arteries but that there was a possibility he would have to make an incision under my left breast to place the third one directly to my heart. I would be put under a local anesthetic but if it happened that they would have to do the other incision, they would tell me and then I would be placed under completely. This did happen, which is what took longer for my procedure.
     I was in the hospital only overnight but wasn't released until about 3:30 PM the following day. The main reason it was so late is that I had to have a chest x-ray and the lab was really busy. I didn't have a lot of pain, mostly what hurt was my shoulder from not being able to move it. I had to hold the same position for the rest of the night, which was hard. I could have gone back to work after 2 weeks but I ended up being off for 4 because my incision under my breast didn't heal due to moisture. Your husband shouldn't have that problem! <g>
     I've had two checkups so far and my implant seems to be working fine. I have a lot more energy most days but I do still have some that I am really tired. My pacer is set to do 92% of the work and my heart does the rest. I think it was originally set for 87%. The only problem I had was for the first two months I had a few shocks from the ICD that scared me. They weren't really bad enough to give me a kick but I felt them. I asked the the technician about them and she said that it was probably that the leads hadn't seated themselves into my heart yet and were possibly moving a bit or that they were lying very close to a nerve because of the tight situation in my chest and were touching it occasionally. It's been about 4 months since then and I haven't felt anything like that again. I'm sorry to be so longwinded but I wanted to try and cover all that I could for you and I'm not very good at condensing things.
     If I can be of any help at all to you, please feel free to either address me here or e-mail me. I'll be happy to do what I can. Good luck and God bless, Nancy.

Suzy C's March 25 reply to Kim S' March 18, 2002 - Hi Karen, Just throw in that second job and our lives are the same. It's wonderful to have others who sustain and uplift us. Our family, friend, and church do that. I count Jon's site and all its participants as my very good friends. Thank you again Jon, we need this, Suzy.

Jon, March 27, 2002 - Hi everyone, The forms will be back up hopefully by the end of the week. Sorry for the delay but making the domain switch is always a booger. ;-) Jon.

Norma Stewart, March 27, 2002 - Hi, I may be a little late in posting my vote for keeping this forum. I recently got back from Scotland, visiting my father (CHF patient) who continues to be hospitalized for edema. Please keep this forum open. I have only posted once before, but it has been a life line for me. I felt so alone being so far away from my family during this time. This forum has helped me feel as though I was participating in some way in my father's illness. You are greatly appreciated!

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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