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

Susan B's 11-2 reply to Neel's 10-31     it can be complicated
 
Andy 11-3     my wife was just diagnosed
 
Karen S' 11-5 reply to Susan B's 10-29     thank you for sharing & more
 
Cheri's 11-5 reply to Andy's 11-3     it can be overwhelming
 
Lisa 11-5     I could sure use some ideas
 
Sharon 11-6     my husband died - a reminder also
 
Roger H's 11-9 reply to Sharon's 11-6     I'm sorry
 
Lorraine's 11-9 reply to Sharon's 11-6     condolences
 
Donna H's 11-10 reply to Sharon's 11-6     you are right
 
Karen S' 11-11 reply to Sharon's 11-6     it hits home
 
Neel's 11-14 reply to Susan B's 11-2     thanks for the information
 
Susan B's 11-17 reply to Neel's 11-14     exercise, gout, knowledge & more
 
Jeff 11-18     seek pacemaker doc aroung New York area
 
Katherine H's 11-19 reply to Jeff's 11-18     possibilities
 
Rachel 11-19     statistics upset me - seek comments
 
Jon's 11-19 reply to Rachel's 11-19     statistics are obsolete and more
 
Kate's 11-20 reply to Rachel's 11-19     don't sweat the stats
 
Darric's 11-20 reply to Rachel's 11-19     don't give up
 
Mike W's 11-20 reply to Rachel's 11-19     keep the faith
 
Lisa 11-20     how do you caregivers cope?
 
Gloria 11-21     being a caregiver is hard & more
 
Claire D's 11-25     seek pacemaker experiences and info
 
Karen S' 11-26 reply to Claire D's 11-25     pacemaker experiences
 
Karen S' 11-26 reply to Gloria's 11-21     coping with caregiving
 
Susan B 11-27     being thankful
 
David L 11-28     seek CHF doc in New York area
 


Susan B's November 2 reply to Neel's October 31, 2003 - Hello Neel, Welcome to the boards. Your questions may seem simple to answer, but the few numbers you have listed are only part of the picture. Your brother's EF numbers are better and being able to breathe is always better. However, there is so much more to this than just one set of numbers. New meds are making people's EF numbers better, but not always do the people feel better. Another measure is the Vo2max numbers, how are those numbers doing? Is his heart back to normal size?
     CHF takes work and there are good days and bad days normally. It sounds like your brother is working at his treatment plan because his EF is going up. All the fluid is a big concern, though. Is he on diuretics? Does he weigh himself every day? Eat a low-sodium diet? Exercise?
     Please take the time to read The Manual. There is a lot of information here and you may be overwhelmed reading it. Knowledge is power. I believe that these web pages have made a big difference in many people's lives including my husband's life. I know that I am much better off with the information. I give out the address more than 15 times a week and people tell me that it is a God send. Good luck, Susan B. gbratcher@kc.rr.com


Andy, November 3, 2003 - Hi, This is all new to me and I guess I'm still in shock. My 41-year-old wife, and the mother of our 3 wonderful children, was just diagnosed with CHF. Her ejection fraction by echocardiogram is 15% and she is in the hospital for an unknown time. Her cath is tomorrow morning. I don't even know what questions to ask at this point, but thanks a lot for putting this site together. Andy. pottera@dsslink.net


Karen S' November 5 reply to Susan B's October 29, 2003 - Dear Susan, Thanks for sharing your good news. I hope your husband continues to improve. I share in your sentiments about this wonderful site, the people who use it, and those who make it happen. It does make a positive difference in our lives. Karen S. gstilley@hotmail.com


Cheri's November 5 reply to Andy's November 3, 2003 - Hi Andy, I know what you mean about being in shock. My husband had his heart attack on July 4, 2003 and had open heart surgery on July 8. It is very overwhelming to say the least. You will probably get "information overload" for the first few days. I was not in the best state of mind so most of it I didn't really hear.
     My husband spent two weeks in the hospital and 6 weeks in an extended care facility. That gave me time to do some research on my own, plus I found this site. This site is great. I read other people's comments and see how they might fit in my life. Hang in there. Just like your wife, you will have good days and bad days. Just appreciate all the good days! I know I do. ckuykendall@taylorsind.com


Lisa, November 5, 2003 - Help! My dad is in Club Med. He is 73 years old with DCM. He has an ICD unit, he's diabetic, has CHF, and had a mild stroke last year, from which he had few lasting effects. He also had a resection of the prostate in February.
     I sent him and my mom on their first vacation in six years last week to Pensacola, Florida to see his brother and family. He was having some trouble breathing at night while he was in Florida on vacation, and I know he cheated a little on his diet. However, his breathing wasn't up to par when he left. They just came home on Monday night and at 3: AM, I got a call that he needed to go to the ER.
     They did a chest x-ray and the usual round of blood work, tests, etc. That showed a little congestion so they started him on IV diuretics (120mg Lasix). He retains most of the fluid in his abdomen. He normally takes 120mg Lasix by pill each day, digoxin 0.125mg, Actos 30mg, Accupril 40 mg, Glucotrol XL 10mg, K-Dur 20 mEq, Lantus 15 units, Coumadin 4.5mg, and Toprol-XL 25mg. They just changed his Toprol-XL to Coreg 3.25mg twice a day. He also uses 3.5 liters of oxygen at night.
     His cardiologist told us yesterday he is in class 2 CHF. Obviously he was admitted and they put an IV of magnesium in him and Natrecor. He is voiding like crazy but when he tries to sleep at night, he still has very labored breathing. Does anyone have any ideas? I am trying to put as much information as I can here, but I am too emotional today due to lack of sleep and worry, to think straight. I have no brothers and sisters - just Mom, Dad and me. My husband is wonderful and very supportive.
     I read here constantly and have posted many times in the past. I am so grateful for the information I get here and for you Jon, and your devotion to this site. Jon, I sure hope things have improved with your family somewhat.
     I just don't know what to do. I trust his doctors and feel good about his treatment. I am just scared. I am the one that does all the research. I know Coreg can aggravate CHF at first; does it also cause nausea? Any info would be greatly appreciated. Thanks and best wishes to each and every one of you. lzeigler@marsbank.com


Sharon, November 6, 2003 - Hi, I haven't logged into Jon's site since 1998 when Tim, my husband, was diagnosed with DCM at the age of 33. He was a perfectly healthy guy, running, mountain climbing, biking - you name it, he did it. He was on plenty of meds and seeing the transplant team every 3 months. They said that although his EF was 15%, his body was compensating for the illness and he wasn't ready for a new heart just yet.
     We slowed down a lot but still went camping, boating, playing, etc. The weekend of October 17th, Tim and my brother-in-law flew to Kentucky for a horse race - it was the first time in 8 years we had been apart. I wished him well, told him not to buy a horse and told him to have a great time. On October 18th, Tim went to dinner with my brother-in-law, and he fell asleep and never woke up. His heart just quit.
     He was 38 years old. Each day is worse than the one before and I am so tired of all the euphemisms people use: He's in a better place, he's not in pain, he is an angel, he would want me to go on, etc. They are all a bunch of things people say when they don't know what else to say.
     I guess I'm writing to thank everyone for their support and info from 1998 and to tell you to log off the computer and go hug your loved one one more time. Thanks to Jon for creating the site, and to the caring people who contribute - it really helped me through some rough times. Take care. Sharon. stillticking@earthlink.net.


Roger H's November 9 reply to Sharon's November 6, 2003 - Sharon, I'm sorry. rjhughs@juno.com


Lorraine's November 9 reply to Sharon's November 6, 2003 - Hi Sharon, I am so sorry for your loss. I just lost my husband on October 1 after a long battle with CHF. It is hard but at least we had 56 years together. I know it must be so much harder to lose someone so young and so suddenly. It sounds as though you had some good times together, though. There is really nothing anyone can say to help much at this time but I do want you to know you have my deepest sympathy. May God be with you. Lorraine. gandlsimpson@msn.com


Donna H's November 10 reply to Sharon's November 6, 2003 - Hi Sharon, I am so sorry to hear about your husband. You are right, there is nothing that anyone can say that makes sense of it. Now I am off to hug my husband. herdrich@grm.net


Karen S' November 11 reply to Sharon's November 6, 2003 - Dear Sharon, My husband has had CHF since the beginning of 2001 after suffering complications from a heart attack which he had the month prior. It really hits home to me when someone from this site loses a loved one. I suppose it is because it is a reality that we all know we might lose our own at any time. Try to be patient about all the insensitive comments - you're right, people mean well, they just don't know what to say. Take care of yourself. You're in my thoughts and prayers. Karen S. gstilley@hotmail.com


Neel's November 14 reply to Susan B's November 2, 2003 - Hi, Thanks for the information, Susan. My brother is on diuretics and weighs himself every day. He's also on a low-sodium diet. Unfortunately, his stomach is back out again, so the tapping didn't work. He's gained back 5 of the 11 lbs he lost. His heart is still enlarged.
     In addition to diuretics, he's on Coumadin, Coreg, Prilosec, Demadex, Digitek, allopurinal, Synthroid (for a number of years), Ambien and K-Dur. I'm reading The Manual, Success With Heart Failure and everything else I can. I'm also thrilled that I found this web site and can get information from others whose family members are going through CHF. I don't know what his Vo2max is, but I'll find out. Thanks for your information. neelstallings@earthlink.net


Susan B's November 17 reply to Neel's November 14, 2003 - Hello Neel, You are welcome. You did not say if your brother is exercising or not. The right exercise program can make a big difference. My husband did cardiac rehab, but we had to ask for it and follow up with the insurance company.
     Does your brother have gout? My husband takes allopurinal for his gout. Gout caused the biggest problems we have had this year. The gout attacks lead to meds to stop the attack, which raise my husband's blood pressure, which cause his nose to bleed. His INR has not been the problem for 2 of the 3 major bleeds this year.
     I agree with you, this site is a God send to all of us here. I am so glad that you are taking the time to read The Manual. There is so much information here that it is difficult to take it all in. I was so overwhelmed at the beginning, I am not sure how I survived it.
     Oh, I know, lots of people praying for us and lots of my own prayers is the way I made it through those first few months. Knowledge is power, and you can become well educated on CHF by reading the information on this site. It also helps me to know that I am not the only one going though this with a loved one. My prayers are with you all. Susan B. gbratcher@kc.rr.com


Jeff, November 18, 2003 - Hi, Can anyone recommend a cardiologist that specializes in replacement of old pacemaker leads? The area of northern New Jersy/New York/Philadelphia is preferred. Thank you. jeff.cassidy2@verizon.net


Katherine H's November 19 reply to Jeff's November 18, 2003 - Hi Jeff, If you don't get a response here, try www.implantable.com. There are very knowledgeable people there who have had leads replaced and can tell you exactly what to look for - something about doing it with a laser. Good luck, Katherine. kholian@msn.com


Rachel, November 19, 2003 - Hello, My boyfriend was diagnosed with CHF last year at the age of 36 but looking back, we now know that he had it at the age of 34, but was misdiagnosed. We had had a tough year, with 2 hospitalizations, many appointments, a heart cath, etc. The doctors never told us that he couldn't beat this, if he did what they told him.
     Yesterday I read some stats that said 50% of the people that are diagnosed with CHF die within 5 years. This really depressed me. I would like to know if there are any people out there that have developed this at a young age like my boyfriend. I think it would make me feel better if I heard your personal experiences, and compare to yours. Thanks in advance for any replies. Rachel. racheleverett@hotmail.com


Jon's November 19 reply to Rachel's November 19, 2003 - Hi Rachel, First read my bio all the way to the end at www/chfpatients.com/bios/jonsplace2.htm. I have had CHF 9 years. Then, read this post (let it load): www.chfpatients.com/archives/archive8-2001a.htm#Jon8-2replyDonC8-2. Jon.


Kate's November 20 reply to Rachel's November 19, 2003 - Dear Rachel, I could not even begin to list the things that have come along to treat this disease since I was first diagnosed 9 years ago. I know there are even more things in the pipeline right now. In 1995 I was told I would only live 3 to 5 years without a transplant. I didn't get one.
     When I was 33 years old I was diagnosed with leukemia and was given a 1% to 5% survival chance. Here I am at age 55 still causing as much trouble as the law allows. Don't dwell on the statistics because they change constantly. Dwell in hope instead. You'll find it a much happier and healthier place to call home. Kate. tothymecottage@frontiernet.net


Darric's November 20 reply to Rachel's November 19, 2003 - Hi Rachel, I am only 31 and just found out that I have CHF with an EF of 28%, which has improved from 12%. My doctor told me that we can beat this but that we have to work as a team to do it, so keep your chin up. Things can and often do get better for those that want them to. dwbenson2002@msn.com


Mike W's November 20 reply to Rachel's November 19, 2003 - Hi Rachel, As Jon has pointed out to you in the info he directed you to, the 50% five-year stat is old hat, so toss it out the window. I'm 56 years old and just had my sixth anniversary. I'm in better shape heartwise than at any time in the last 6 years. Keep the faith and keep doing research. Peace, Mike Wafkowski. mikeyw@sohogurus.net


Lisa, November 20, 2003 - Hi everyone, I am sure that many of you feel this way, but I am having an emotional day I guess. My dad has CHF (class 2) among other things, including diabetes and DCM with an EF of 20%. He is only 73 years of age in my eyes. I just feel so bad that he has to go through so much and take so many pills.
     Then he gets cranky, sad, and depressed, which he seems to take out on my mom. Then she gets sad. Then he feels bad because he feels like he "puts so much" on us. We understand that it is what it is and we have to deal with it, but this disease is the pits. I guess we have been dealing with this for about 8 years now.
     He was recently decompensated and in the hospital, but is now home and doing some better. However, they changed some meds, which make him nauseous. He throws up sometimes and feels lousy. Then he will feel a little better and try to do a few things, then feel bad again. What a cycle!
     Overall, we are grateful and feel very blessed, but some days it is so hard to remember that it could be worse. I guess I am just venting because I am so close to both of them. My mom's health is pretty good. My husband and I go away every December and I just have a hard time relaxing on vacation because I am always so worried.
     What do all of you do to cope, besides pray a lot? I try to be so strong for them, but you all know the old saying: "When it rains, it pours." When one little thing goes wrong the whole domino effect starts up again. I'm just looking for a little support, I guess. lzeigler@marsbank.com


Gloria, November 21, 2003 - Hi Everyone, I've been lurking here and received a lot of information from this site. I printed out a lot for my 70-year-old husband who has CHF, COPD, diabetes and low kidney function. He's been in and out of the hospital 5 times in the last 4 months.
     His EF is 40%, which sounds good, doesn't it? However, he cannot walk more than a few steps without getting totally breathless. Standing up is so hard. Bending over is impossible. He uses a wheelchair when we go out, along with oxygen at 2.5 liters per minute. I haven't been told what class he is in, but suspect he is Class 4 or nearly there.
     He had a blood transfusion the last time he was in the hospital and that was the first time he came home stronger than when he went in. He just started Procrit injections, along with taking many of the meds I've seen listed here.
     I realized yesterday that I am the most important factor in his quality of life. That sounds more grandiose than I mean it to sound. What I mean is that as his primary caregiver, my attitude sets the mood for his whole life. That is a hard burden and probably the cause of caregiver burnout more than anything, do you think?
     More expert support is needed for both the patient and the caregiver when coping with CHF. It is such an up and down disease. I feel I have to make medical decisions (increase Lasix? go to an ER?) that I am not trained to do. During all this caregiving, I have to cope with losses. The biggest loss is losing my friend and lover, day by day.
     In answer to Lisa's question: You take it day by day. Learn as much as you can. Develop a good relationship with the doctors, including the ER doctors! Keep a sense of humor! Most of all, take care of yourself. Thank you Jon, for such a wonderful site. gloria@worldofwatercolor.com


Claire, November 25, 2003 - Hi, My husband just had to have a pacemaker put in and I have lots of questions for someone who is familiar with pacemakers. First a little history: He went in for a heart cath. His regular doctor had told him he had a blockage in the lower artery of his heart, concluded from a stress test with x-ray, yet didn't send him for the cath. According to him, he had planned to do so later on.
     However, in the meantime he his breathing got so labored that he couldn't even take a short shower without almost passing out. His pulse was down to 44. We decided on our own that we wanted a cardiologist. Immediately the cardiologist sent him to the hospital for the cath to make sure that was the problem. He specifically told us there was no way to be sure he had a blockage without the cath.
     While he was getting the cath his pulse dropped and his electrical system went down. The cardiologist had to put in a temporary pacemaker until the following day when they put in a permament one. We had previously been told by his regular doctor that he had a left bundle branch blockage but told us that was nothing to worry about, that it was seen all the time and "could be" an indication of something going on, which was probably the artery blockage. This MD even specified that his artery blockage was intermmediate. It also turned out that my husband had no blockage at all in his arteries, as we had been told.
     I am concerned about the pacemaker, what can stop it, what I can do if something does happen (the paperwork tells us to keep all electrical appliances in good shape, etc.). I am curious to find out what the dangers are and if anyone else has any experiences with a pacemaker, either yourself or family member who can shed some light on the subject. At this point it is all pretty scary to me.
     Thanks so much in advance. nikibkpr@aol.com


Karen S' November 26 reply to Claire's November 25, 2003 - Hi Claire, My husband had an ICD implanted on 4/7/03. He has had no problems whatsoever from any appliances or anything else, and he's not particularly careful about what he does.
     My husband's ICD is made by Medtronic. They have a good web site with lots of info. See if the manufacturer of your husband's pacemaker has a web site. My husband was having a lot of abnormal heart beats before he got the ICD; his blood pressure would drop really low and he was almost lethargic at times. The ICD has helped.
     Don't be scared, it just takes some getting use to. Most of the time we forget my husband has the ICD. Take care, Karen S. gstilley@hotmail.com


Karen S' November 26 reply to Glorias's November 21, 2003 - Amen Sister, You have summed up what probably most of us feel at times. Making the medical decisions is the hardest for me. At times when I'm making these decisions my husband isn't able to contribute to the decision. After almost 3 years of this, I almost burned out. I have recently learned that I have to take care of myself. If I don't take care of myself, I can't take care of my husband. I learned it the hard way. My advice to all of the caregivers out there is to do something special for yourselves. Karen S. gstilley@hotmail.com


Susan B, November 26, 2003 - Happy Thanksgiving, I wanted to take this time to thank you all for your advice and support; to Jon for all his hard work and great advice; to everyone else for the support and information. I have said this many times: I would not be doing as well nor would my husband (he has CHF) without this site. It is a God-send and I wanted everyone to know that it is one of the things that I am thankful for this day.
     One of the things that I do for myself is read these pages and write. It helps me make it though the hard times and it gives me a place to vent and a place to share the support that I have received. Thank you and I hope you all have a blessed day! Happy Thanksgiving! Susan B. gbratcher@kc.rr.com


David L, November 28, 2003 - Hi, I need some help! My dad has been in the hospital 3 out of the last 4 weeks. He has a-fib and CHF with a 25% EF. He has one "good" coronary artery. The attempt at stenting him failed. There was too much calcification. They implanted a pacemaker but it got infected and had to be removed. All in all, we're not happy with his docs.
     We live in suburban New York, west of the Hudson. Columbia, Mount Sinai, New York Hospital, and Beth Israel are all reachable. Can anyone recommend a CHF doctor or center in our area? davidl@bway.net


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

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