The paperwork never ends The Archives
Loved Ones - January, 2001 Archive Index

Mary T 1-1      seek others with implanted devices
Tina 1-1      seek ideas on sodium reduction
Karen D's 1-2 reply to Tina's 1-1      sodium reduction, diet
Todd 1-2      seek info on end-stage CHF
Kathryn 1-2      son had seizure, questions about dehydration & more
Anne P 1-2      teen daughter has CHF from chemo, questions
Judy 1-2      at wit's end, seek suggestions
Kathryn's 1-3 reply to Anne P's 1-2      info, sodium, coping & more
Cheryl J 1-3      questions about my mom, is there hope?
Bonnie 1-3      intro, questions
Jon's 1-3 reply to Kathryn's 1-2      "epsiodes"
Barbara H 1-5      seek cause of my daughter's death
Cheryl J 1-5      mom's high potassium better now
Bill D's 1-5 reply to Bonnie's 1-3      have he seen an electrophysiologist?
Kathryn C's 1-5 reply to Jon's 1-3      seizure and collapse episodes
Beth C 1-5      questions - pacemaker, meds, second opinion?
Kathy's 1-5 reply to Pat's 12-14      ACE inhibitor cough
Susan W 1-6      intro
Vicky 1-8      how do you cope? What do I tell my brother?
Lillian 1-8      how long will my dad live? & more
Davida S' 1-10 reply to Tina's 1-1      low sodium & exercise
Lillian's 1-10 reply to Jon's 1-8      The Manual really helped
Brian's 1-10 reply to Tina's 1-1      good CHF books, coping with mom
Kim 1-11      appreciate this web site
Sherry 1-12      my mother died
Connie 1-12      thank you, update
Jon 1-16      an apology for lost posts
Bonnie Barnett 1-16      VA driving me nuts & more
Bonnie Barnett 1-16      this site helps & more
Sue S 1-16      seeking advice, suggestions, etc,..., about dad's treatment
Beth C 1-17      pacemaker, drug, headaches experience
Barb L S 1-20      update, pneumonia experience
Jeannie 1-20      young boys with CHF - questions
Jon's 1-20 reply to Jeannie's 1-20      specialists, heart transplant
Sherry Smith 1-20      very worried - questions about my mom
Barb L S' 1-20 reply to Susan W's 1-6      my experience
Linda Grant 1-22      why is it so hard to lie on left side with CHF?
Kathryn's 1-23 reply to Jeannie's 1-20      youngsters & transplant & more
Phyllis E 1-23     feel cheated, have questions
Nadine 1-23     seek heart attack sniffing dogs
Lillian's 1-23 reply to Phyllis E's 1-23     I know how you feel
Lillian 1-23     feeling guilty but then again,... - seek opinions
Karen D's 1-24 reply to Phyllis E's 1-23     life insurance possibility
Connie M 1-24     help paying for Rx meds
Mike W's 1-24 reply to Phyllis E's 1-23     anger, and dealing with the source
Gabi 1-25     seek a specialist & more
Bill D's 1-25 reply to Gabi's 1-25     finding an appropriate doc
Carolyn 1-25     appreciate posts, husband's fatigue bad
Lee's 1-25 reply to Gabi's 1-25     bypass surgery experience
Linda Z 1-26     CHF doc who treats irradiated heart victims
Todd 1-26     dad's on primacor, questions, seek other options
Gabi's 1-27 reply to Linda Z's 1-26     many thanks, am checking with different docs
Barb 1-27     what is life span in end-stage CHF?
Joanne C's 1-27 reply to Barb's 1-27     end-stage heart failure
Lillian 1-27     update on my dad - doctors!
Marsha 1-30     where should my friend turn for help?
Phyllis E 1-30     thanks for responses, update
Jane 1-31     update, stress of illness can be tough

Mary T, January 1, 2001 - Hi, Does anyone have a loved one with one implanted for compassionate reasons, not as a bridge to transplant? Any info would be appreciated.

Tina, January 1, 2001 - Hi, My mother was recently diagnosed with CHF. The ER docs gave her Lasix and potassium and advised her to cut back on the salt. What I'm wondering is, do I take a look at the sodium in everything? How much is the right amount and how much is too much? I believe that her being overweight by 100-150 pounds is part of what's causing her heart to work too hard. If not, well, it's still a good way to get her to lose weight! Cutting out fat was how I lost my weight, so I'm trying to cut it out of her diet as much as possible. Please, any help with the salt and sodium issue would help. Thanx, Tina.

Karen D's January 2 reply to Tina's January 1, 2001 - Hi Tina, Most CHFers are told to keep their daily sodium under 2000 mg a day (2 grams). Just not adding salt while you're cooking isn't enough. For example, a can of soup can contain as much as 1000mg of sodium in one serving, which is half the daily allowance right there! It's really important to read all the labels - and keep checking them, because some manufacturers "improve" their product, and that "improvement" may well be more sodium! OreIda did that with their frozen french fries and Hormel adds a saline solution to their fresh pork products. However, Del Monte has a line of "no salt added" canned vegetables that are really good. Good luck. You're also right about the fat in her diet. She should be on a low-fat, low-sodium, low-cholesterol, no alcohol, no caffeine, no nicotine diet. If she doesn't already have a CHF doctor, please suggest that she find one. Karen.

Todd, January 2, 2001 - Hello, My father has had CHF for over 6 years now. His condition as I understand right now is decompensated, which is not good. He is currently getting Primacor treatments twice a week. We have been told he won't be around very long but nobody can tell us what to expect. He does have problems with his memory and sometimes is not really "there" but other times is quite sharp. My question is, have people with decompensated CHF been able to get a little better with treatments like Primacor and is there anything else out there on the horizon for end-stage heart failure patients? Thank you again as always Jon, for this site. I don't know what we would have done if we hadn't found it. Todd.

Kathryn, January 2, 2001 - Hi, I am concerned about an incident that happened over the weekend with my son. We have both had a bad upper respiratory cold for the past 2 weeks. He began developing flu-like symptoms even though he had a flu shot in November, with diarrhea and nausea. About 3:00 AM Saturday I heard him in the bathroom saying, "Mom, I'm really dizzy." I jumped up and when I went into the bathroom found him out cold on the floor. He seemed to have had a seizure and I wasn't able to move him. He is six foot three inches tall and weighs over 250 lbs. I got him to come around by shaking him and calling his name and then I rushed and called 911. The paramedics were there in about 5 minutes.
     His heart and BP were okay. We were both scared and insisted that they transport him to the ER. They acted like it was an unnecessary trip. In the ER, the docs seemed to think he had gotten dehydrated and gave him a liter of saline and a shot for nausea. We were back home in about 1½ hours. My question is, has anyone else had this happen? Can significant dehydration be a common occurance with CHFers and the diuretics they need to take?
     The good news is that they did a chest x-ray in the ER to rule out pneumonia and his heart has returned to normal size. So since this weekend we have been very careful about fluid. Making sure that he drinks when he is thirsty and carefully watching for signs of dehydration and fluid loss. This was very scary. We are making an appointment asap with his primary care doc, and his cardiologist. Thanks for listening, Kathie.

Anne P, January 2, 2001 - Hi everyone, I'm glad I've found this site. My 17 year old daughter Nicole was diagnosed with CHF December 21 with an EF of 10%, as a result of chemotherapy (doxorubicin) received for bone cancer between October of 1999 and October of 2000. We are devastated, again. She spent 6 days in ICU through Christmas but is now home on bed rest with Lanoxin and Vasotec. We go back for a followup visit with the pediatric cardiologist team this Thursday.
     I am really uncomfortable being home with her. Does anyone monitor BP or heart rate? The doctor has not restricted salt because they want her to gain weight. She she is at 100 lbs right now and she has this new insatiable craving for salty foods! I'm wondering if this is her body responding to the diuretic. I am limiting her potato chip supply to once daily. Thanks for listening. Anne, mom to Nikki, osteosarcoma, limb salvage surgery, thoracotomy, CHF.

Judy P, January 2, 2001 - Hi, I don't know where to begin. Two days before the turn of 2000 my mom had a heart attack. One week later she had a second one, then CHF. She has been struggling ever since. I do not live very close to her but I have spent most of the year going back and forth. She has many other complications as well as being diabetic. I couldn't begin to list all that she has. Two days before Christmas she was hospitalized again and on Christmas Eve she went into respiratory arrest. She is doing better and has come home but is very depressed, weak, and says she is sick of being sick. I have spent most of this year trying to boost her spirits and she was doing well. We have had illness after illness hit both sides of our families, and I just don't know what say or do anymore. Can anybody help me with suggestions, please? Thank you for listening.

Kathryn's January 3 reply to Anne P's January 2, 2001 - Hi Anne, My son (see the post above) is 27, and has had CHF for the past year and half. We do not monitor his BP and heart rate but I was tempted to do so early on. When he came home from the hospital I was so scared and nervous I could hardly sleep. It was almost like being at home with a new baby. Sometimes I think monitoring BP and heart rate might just make us dwell on his being sick but it sounds like your daughter has been through so much already that it might not be as much of a concern. You just need to do whatever is medically necessary and whatever makes her and you the most comfortable.
     I am so sorry to hear about your daughter's problems. This web site is the best. Read everything you can here and be sure she and you are comfortable with her cardiologist. I am not sure about the sodium restriction but I would think you would want to limit it. It is sometimes difficult to regulate fluid balance, as in my son's case, who got dehydrated and that can be scary. I will keep you in my prayers and thoughts.

Cheryl J, January 3, 2001 - Hi Jon and everyone, I tried to post before but didn't do it correctly, I guess. Anyway, my mom was diagnosed with CHF 2 years ago and also has diabetes. She was doing fine untill about a month ago when she had a heart attack and went into heart failure with lots of fluid buildup. She wasn't strict with her diet (but now is). Anyway, things got bad quickly but she pulled through it and is now home. She is very weak and extremely tired all the time. Her visiting nurse says she needs to exercise and so does the physical therapist. Mom says she's too tired to do anything.
     The doctor and cardiologist say to only do as much as she feels well enough to do, which is just walking a little in the house. She does go up a flight of stairs several times a day (slowly) to use the bathroom but it wears her out just doing this. My question is for anyone who can answer: does this mean her CHF has advanced to a worse stage? My brother takes her to see the doctors but doesn't want to ask this question for fear of upsetting my mother more, as well as not wanting to know himself. She has been on many meds since the beginning, including Coreg, which he cut down and isorbide, which he cut out but started again today. Does this sound unusual?
     Also, if it is end-stage, how long can this last? Can she get any better? He said her heart's pumping ability was only 20% and is even less after the heart attack. He hasn't said what class she is in. I have read The Manual as well as lots of other information about CHF. She keeps saying she can't understand why she is so weak and I dont know what to tell her. I have been with her every day practically since she came home. I want to give her some hope; Is there any? Thanks for listening.

Bonnie, January 3, 2001 - Hi, My name is Bonnie and my husband has had 9 heart attacks. This has been a very difficult time for me as we have 4 young girls. We have been told everything from "Get a transplant" to "There's nothing we can do." Life goes on and we are left with decisions to make. My life to this day is totally existent on how the man I love feels. Please drop me a line or two, Bonnie.

Jon's January 3 reply to Kathryn's January 2, 2001 - Hi Kathryn, I had a similar episode a few years ago. The doctors swear it was hyperventilation but I sure thought I was dying all the way to the hospital in the ambulance. I collapsed in a pharmacy (of all places) and my hands and arms " drew up" into "claws" and my body went numb inside and out one area at a time. By the time fluids and oxygen control got it stopped, only my eyes were not numb. The docs said people usually pass out completely long before that but I was one of the lucky few to feel it all. <g>
     Talking to a nurse-manager at my CHF doc's clinic, she related her daughter's experience with an identical episode, which was from dehydration. This is one of the few nurses I trust to be completely straight with me so I believe this could indeed be the cause of your son's episode. Obviously I don't know; I mean it could be something else entirely, but this was to let you know that similar episodes have happened with dehydration as the cause. Jon.

Barbara H, January 5, 2001 - Hi, The sudden death of my daughter with CHF has me puzzled. I asked Jon this question but he had no answers. She was only 40. It had been 2 months since her diagnosis and she was on many meds for CHF. The doctor said she was improving. Her husband said she grabbed her head, not her chest, said, "Oh My God!" and fell out her chair dead. He attempted CPR to no avail.
     Could this have been a blood clot? Has anyone had this happen to a family member and had an autopsy done? I'm suspecting the doctors didn't do everything they should have to treat her CHF. The only med she was advised to take for blood thinning was one baby aspirin daily. She also had DCM, which I've had for 12 years without CHF and no worsening of symptoms. Does this mean my doctor is giving me the correct meds and hers was not? Can anyone shed any light on this for me?

Cheryl J, January 5, 2001 - Hi again, Well, my mom had some blood tests done today again and they found that she had a very high potassium level, very dangerous, I hear. This was caused by her blood pressure medicine, Vasotec. She also had a high digoxin level and some fluid in her lungs; maybe her backache was from that. We have doubled up on Lasix for a few days to hopefully get rid of 4 pounds of fluid by Monday. Already she is feeling a little better. I can't believe they finally found the cause of the high potassium. This has been coming and going for months. Thankfully, it is better today, just after stopping her ACE inhibitor last night. I talked to the doctor myself today about whether her condition has advanced and his answer was somewhat. Anyway, hopefully tomorrow will be a better day for her. I'm so glad to have found this site, thanks Jon.

Bill D's January 5 reply to Bonnie's January 3, 2001 - Hi Bonnie, Nine heart attacks must break a record! Has he ever been referred to a transplant team? They are the guys in white hats who'll keep you alive till a transplant becomes available. There are some of us who've had a heart transplant and are living a new life. There must be an electrical "short" in his heart that is causing his heart attacks. Have you gone to an electrophysiologist? Bill D.

Kathryn C's January 5 reply to Jon's January 3, 2001 - Hi Jon, Thanks very much for the reply. We did get to the primary care doc and he agreed that this was probably due to dehydration so we are still being vigilant but a little more at ease. My son had a similar episode in the CCU when he was first diagnosed. He completely collapsed and had a seizure. At that time they didn't know for sure what caused it but suspected that it might have been dehydration. They did however call it a grand mal seizure - pretty scary stuff, this CHF and not for the "faint of heart" <lol> Take care, and thanks again. Kathryn.

Beth C, January 5, 2001 - Hi, I am wondering if anyone has experienced the following: My husband who is 50 and has had a third degree heart block since birth had a pacemaker implanted last August. His usual bpm rate is 42 - 44 and because his heart rate was falling way below that at times, the cardiologist recommended a pacemaker. His only symptom had been fatigue, and his EF on the echo given at that time was 65%. Since he did not feel better after the pacemaker was implanted, a stress test was given in October and a catheterization was done in December. By then his EF was down to 30%.
     He has been to a CHF clinic in our area and was initially placed on Altace and Coreg. That was 2 weeks ago. Yesterday he was told to go off Coreg because of bad headaches but to increase the Altace. The doctor is going to investigate whether the pacemaker implantation itself has contributed to this condition. He is now paced at 70 bpm which is much faster than he was ever used to. He has a follow up echo at the end of this month and then another appointment. I am wondering if we should get another consultation. What else can we do to aggressively pursue this? I am not comfortable with waiting a month between checkups and between getting additonal information. Has anyone had any experience with this?

Kathy's January 5 reply to Pat's December 14, 2000 - Hi, I was on Vasotec for years and had the annoying cough. My friends and family don't have to worry about not finding me in a store, they just listen for the coughing and find me every time. ;-) I later discovered I was having allergy problems (environment and food) as well.

Susan W, January 6, 2001 - Hi, I am glad to have found this site. I'm 33 years old and the daughter of an almost 78 year old woman who was just diagnosed with CHF as a result of rheumatic heart disease from childhood. I am going through a roller coaster of emotions and find some comfort in the fact that there are so many others out there who can relate. My mother was admitted into ICU on Christmas morning with pneumonia, a Strep B infection and severe dehydration. While there, she also suffered a heart attack. She spent 13 days in the hospital and was released yesterday afternoon. At 1:30 this morning, she collapsed from CHF (too much fluid, I suppose. I'm still trying to understand) and she is back in ICU. She has all but given up and doesn't want to even consider heart valve or any type of surgery.
     I feel like I still need my mother even at my age and my kids (ages 5 and 16 months) certainly need her too. No advice needed, I just wanted to share my story. It helps to just talk about it sometimes. Thanks.

Vicky, January 8, 2001 - Hi, My 41 year old twin brother has CHF. He is obese, weighing 450 pounds. The doctors give him no hope. He calls me and tells me this. I believe his kidneys are starting to fail. What do you tell a loved one who is going through this? How do you help them cope? My father has passed away but my mother is still living. She had a stroke in February and I don't think she will be able to handle losing him. How do you go about your day without it looming over you and taking over your thoughts till you cease to function yourself? He has been diagnosed now for about 2½ years. If you have any advice or words of comfort I would appreciate them. Thanks for listening.

Lillian, January 8, 2001 - Hi everyone, My dad is 52 and was diagnosed with CHF about a year ago. He was told he had 30% use of his heart. He also has diabetes and he had a stent put in about 3 or 4 years ago. About 2 weeks ago my dad had a mild heart atteck and was put in the hospital. He found out that he had a lot of fluid build up and was put on Lasix. Most of the fluid is gone now and he is also on oxygen at home. He only uses the oxygen at night so he can get some sleep. When he was in the hospital no one would tell us anything. I asked the doctor how long my dad was expected to live and his reply was that my dad will only get worse.
     I also have a 19 year old sister who has had diabetes for 13 years and has been in and out of the hospital about every other month for the past 2 years. I am scared but at the same time nothing seems real. I can't cry. I haven't cried for my dad at all. I really need the doctor or someone to give me a life expectancy for my dad so I can try to prepare myself. What are the different stages of CHF? How can I make the doctors give me honest answers? They don't seem to want to give us any info at all. It took me asking 3 different doctors to find out what bigems (bigeminy) were because my dad had them while he was in the hospital. Please someone write back to me and let me know your encounters with this disease. Thank you, Lillian.
Jon's note: Hi Lillian, a good place to start is The Manual :-)

Davida S' January 10 reply to Tina's January 1, 2001 - Hi Tina, You should read all labels. My husband has CHF and that was the quickest way to reduce his sodium intake and improve his condition. We look for snacks with less than 4% sodium per serving and we utilize the recommendations of a serving. We measure condiments such as mustard and mayonaise. We buy the lowest sodium products in bread, orange juice and spaghetti sauce. Usually the beginning is the most frustating but soon after, you know which brands have the lowest sodium and you stick with it. My husband has not had canned soup in about a year and no frozen dinners. He eats lots of frozen veggies and no salt added canned veggies, and lots of fruit for fillers to keep him from overdoing it at meals. He has lost weight and maintained it, and the doctor has reduced his Lasix to 20mg once a day. I would suggest she walks to exercise her heart. In return it will help her to lose weight. Dan walks just to strengthen his heart and endurance.

Lillian's January 10 reply to Jon's January 8, 2001 - Thanks Jon, The Manual was a big help. I am the type of person who needs to know everything and when the doctors won't tell me anything I get very frustrated.

Brian's January 10 reply to Tina's January 1, 2001 - Hi, Please get The No-Salt Low Sodium Cookbook by Donald A. Gazzaniga, and prepare some of the items for your mom. I know Jon mentioned this book a few times. I ordered it last spring and got it a few weeks ago. It is good reading and the recipes are good, especially if you have been not adding salt to your regular cooking without making other changes. Boy, that can be grim.
     Also, I know you've heard it before, but the Success With Heart Failure book is also worth reading. I'm 49 and highly motivated to take care of myself. Coreg made a big difference for me but if your mom is like mine, you are going to have a rough time getting her to change her lifestyle. My mom has CHF also but she isn't motivated to follow the guidelines. Love her and do the best you can but don't expect miracles; just keep trying and don't get upset with her if she doesn't do everything you think she should. As it says, why do I do what I don't want to do? We all do this. No one leads a perfect life.

Kim, January 11, 2001 - Hi Jon, I cannot tell you how much this site has helped me. Thank you so much for this awesome site. My mom Nancy, is 60 years old and has end-stage CHF. This site has kept me informed and really educated me about CHF. God bless you!

Sherry, January 12, 2001 - Hello friends, I would like you to share with me the loss of my mother, who passed away last night. She left peacefully in her sleep and is no longer suffering. This time she couldn't overcome the pneumonia. Thank you Jon and all my friends who supported me through difficult times. May G_d bless all of you, Sherry.

Connie, January 12, 2001 - Hi, This is just a quick note to say a big thank you to Jon for this wonderful web site. We now have my husband with a CHF specialist and are talking to a very good transplant doctor. He will need a heart and lung transplant. I have learned more from this web site than nearly 5 years of trying to get doctors to slow down long enough to answer simple questions. Our new doctor has a counselor to help; she knows everything about everything and doesn't mind answering questions for hours.
     It might be noted that when we asked her why most doctors wouldn't take the time to answer questions, she said point blank that the main reason was that if most people are extremely well informed, they know when to sue doctors and hospitals. Anyway, things are looking up for us. I just wish we had all this info 4 years ago. Thanks again, Connie.

Jon, January 16, 2001 - Hi everyone, In a rare double whammy, I have lost posts twice this week: once last weekend when my pooter had a seizure and then again Sunday and Monday due to server difficulties. My web host says he cannot recover the last batch of lost ones. If your post does not show up in this update, I am sorry to say, it needs to be re-posted. My sincere apologies. I am really sorry, Jon.

Bonnie Barnett, January 16, 2001 - Hi, Wayne is recovering from his 9th and yes I said that right, heart attack. We are reciving all kinds of junk from the VA in getting pre-approval for another, more experienced cardiologist to see him. It seems like it would be easier for him to be gone then to have to deal with someone who might make a difference. Yes I am mad! I am so tired of hitting my head aginst this brick wall! There is only so much of me to go around. The last time I e-mailed, I received so many great answers. Jon, thank you so much for this site! I will never be able to express that feeling that I had the night I ran into this site! Thanks, Bonnie.

Bonnie Barnett, January 16, 2001 - So much happens in such a short time! It is so unreal, the things we take for granted every day! I am so grateful for being on the Net, learning to use it the night I found this site! It was a fluke if you will. I tend to think that God was listening to my cries, the ones I place with Him almost every night. Once again thank you, Bonnie.

Sue S, January 16, 2001 - Hi All, My dad had 2 MIs and CHF in December of 2000. He then had double bypass surgery. His main right artery is so blocked, it could not be repaired. The overall outcome of the surgery is that his heart is at about 35% capacity. He had a 3 week stay in the ICU due to complications and another 2 weeks on a cardiac unit before he got discharged. He made it to rehab and was there 4½ days.
     While he was at rehab, the rehab cardiologist put him on Coreg, which caused him to go into acute CHF and he was rushed to the hospital. The rehab cardiologist told me and my father that the Coreg caused the CHF. My father also has an irregular heartbeat for which he is taking amiodarone. This med had many side effects, some of them fatal. He is still in the hospital due to the CHF.
     My dad has had heart disease for years and never knew it, so this is all new to us. I am the only family he has so it's pretty much me and him making the decisions collectively. What is the best way to get educated fast? I read The Manual, which was vey helpful. What are some good questions to ask the doctors? Since the Coreg incident, I ask daily if there have been changes to his meds and what they are. Should my dad see a CHF specialist? One of the dilemmas in switching cardiologists again is that the rehab only has 2 cardiology groups for us to choose from. If anyone has any advice or has been through a similar experience, I would greatly appreciate hearing from you! Sue S.

Beth C, January 17, 2001 - Hi, I have not received any replies to my post of January 5 but I do have an update on my husband's condition. His cardiologist ordered the pacemaker to be reset to 60 bpm; 50 at rest. Also, medication was changed again in the hope of finding one that does not cause severe headaches. He is now taking Cozaar. This was one week ago. We also asked for a referral to a major teaching hospital about 60 miles away. The doctor agreed to this but wanted another echocardiogram done before writing the letter. The echo was done yesterday and showed an EF of 56%! The cardiologist said he has never seen anything like this before. I am still in favor of a second opinion. This seems very strange to me but it is certainly great news. I hope there are others out there who can benefit from the situation. At any rate, he will continue to be closely monitored and he is to continue on the Cozaar, at least for now.
Jon's note: I believe that getting a second medical opinion is always a good idea

Barb L S, January 20, 2001 - Hello to everyone, I couldn't get here because I've had pneumonia since late November until the present. I was in the hospital all through the holidays. I never forgot anyone here! I love coming here and talking with everyone. You guys are all great and so supportive, when I speak concerning my dad. I hope and pray that everyone is okay.
     Please everyone, get your pneumonia shots and stay away from anyone ill with pneumonia or bad colds and viruses. There's a misconception that pneumonia is not contagious but it can be very contagious. My dad was doing fantastic but slipped on ice the other day while shoveling. This was something he didn't need to do but we can't seem to stop him. He's strong-willed and strong-minded and very opinionated. <g> When I get over this pneumonia and anemia, I'll be back. I miss you guys a lot. Please get your flu and pneumonia shots. I go for my sixth x-ray next Monday to make sure it is still trying to clear up. I miss you all and a very belated merry Christmas and happy New Year! God bless, Barb.

Jeannie, January 20, 2001 - Hi, My 13 year old nephew got a virus around Thanksgiving and ended up with CHF. At work, my husband heard of another 11 year old boy in the same situation. Does this happen often? Doctors twice sent him home, saying it was the flu. I can't help but think that maybe if they had caught it sooner, he would be better.
     How do they decide whether he should have a heart transplant rather than any of the alternatives? They keep saying transplant is his only hope. This web site is the first place I have felt that there are people who believe there is hope, health and love. Please pray for Rickie.

Jon's January 20 reply to Jeannie's January 20, 2001 - Hi Jeannie, I would strongly suggest that your nephew get a second opinion from a CHF specialist. Transplant is the last resort, and often a CHF specialists can suggest effective therapy which would not occur to a regular cardiologist. Jon.

Sherry Smith, January 20, 2001 - Hi, Thank you so much for this site. I don't even know where to start so I will try to keep this short. This is my first post. I am so glad there are others who can actually relate to what I am going through. My mom had her first heart attack 7 years ago. She almost died. It was very massive, destroying a third of her heart. She had 3 more after that. They also found an aneurysm in the front of her heart and they say they can't operate although I'm not sure why.
     She has been hospitalized 5 times with CHF. I cry every night I am so afraid she is going to die. I am only 27 and she is my life! Seven years ago, her EF was 33%. After her last hospitalization, it was 18%. Is there anything I can ask the doctors to do? She has been on Coreg for a year. Will this make her better?
     She is going for an angiogram next week. Her last one was 5 years ago. Is that too long? She is terrified. Is there any danger to this angiogram? I am so glad I found all of you! Thanks.

Barb L S' January 20 reply to Susan's January 6, 2001 - Hi Susan, There is nothing wrong with having strong feelings for your mom at age 33. Love doesn't have boundaries by age. It just loves and keeps loving no matter what. I know you said no reply needed but your post was the first thing in a long time that hit me on such a personal level. I am forty now but was 36 when I developed CHF. My mom was very ill with lung disease. As if all that pain was not enough I had been 4½ months pregnant, had a 15 year old, and loved my 72 year old mom with all my heart.
     My dad is 82 and besides being a mild CHFer now, he has other health problems. My sister and I went through what you're going through now. I'll tell you what: When our son Alex picks up the phone and starts talking with him, it does not matter that Alex is 3 and my dad Sam is 82. They laugh and it makes my dad's day. So feel those feelings. You have every right and so do your children. Age is only a number that tells us when we arrived into this beautiful world. God bless, Barb.

Linda Grant, January 22, 2001 - Hi, My husband has CHF and has lots of real difficulty lying on his left side. This causes his heart to go into really weird beating and flopping situations. Why do people with CHF have such a problem with lying on their left side? His heart is enlarged. Does anyone have any advice on how to deal with this? Thanks. Keep well, all.

Kathryn's January 23 reply to Jeannie's January 20, 2001 - Hi Jeannie, I'm so sorry to hear about your nephew. I know of a child who is 12 recently diagnosed with CHF. He did not respond to medications and was put on a left ventricular assist device but had to remain in the hospital in critical status and wait for a heart transplant. He got his heart transplant and is doing fine, so there is always hope.
     I don't know what the individual situation is with your nephew. Each case is different but viral CHF is not uncommon, as far as I know. I am hoping your nephew's parents are confident in his CHF doctor. I know all this is scary. Your nephew is in our prayers. Blessings, Kathie.

Phyllis E, January 23, 2001 - Hi all, It has been some time since I last wrote in, however I check the site every 2 days or so. My husband is now on disability at 53. He was diagnosed in March of 1998. He kept working because of pride. At the time he was making great money and could have had 5000 per month disability income. Well, he got to feeling so bad and did not do as well as the two years before. Also, the company changed compensation plans, which cut his income by half and changed insurance companies, which only counted one year instead of the 3 year average the pior insurance considered. On top of that COBRA kicked in $400 per month and if he added me, it would have been 750 more per month, which leaves me with medicare only. I am on SSD because of crippling arthritis.
     This might sound selfish but the worst blow was life insurance. He had $250,000 worth for me. We have to apply for a new policy without evidence of insurability at $750 per month now. I don't think my husband will last the year. He still drinks heavily, smokes, eats salty everything and weighs over 300 lbs. I feel angry. I feel I have been violated and will have to go live with my daughter if he dies. I am thinking about suing the insurance industry. I could understand being cut off if fired or quitting his job but he was with them 20 years and was a valued employee.
     We cannot afford the cost of health and life, and still live. We keep saying we will adapt. God has always provided but sometimes he calls for us to take a stand. I would like to ask my husband's company how they would feel if they could not take care of their family if they were disabled and died after expecting to be able to do so for 20 years. What do you all think? Thanks, Phyllis E.

Nadine, January 23, 2001 - Hi, A friend recently told me she was watching a documentary on tv about the Deltathree Society and trained service dogs who can detect a heart attack in progress, even when the owner is sleeping. Does anyone have any information on this? I went to their web site but didn't find any information about this specifically.

Lillian's January 23 reply to Phyllis E's January 23, 2001 - Hi, I know exactly how you feel. Unfortunately, big-shot company owners stay away from the workers for the most part. That way they don't form a friendship with their people and when something bad happens it is easy for them to say, "Oh well." My dad was diagnosed with CHF almost a year ago and has already spent his life savings on bills and rent because the SSI office keeps playing games. They tell him to send something and he does, and then they just want more. Would you mind if I e-mail you? I have more to say and I don't want to take up too much space. God bless, Lillian.

Lillian, January 23, 2001 - Hi all, I am just giving an update on my dad. His doctor put him on oxygen at home, which he is starting to use more and more. I am kind of angry with him because he is having a lot of trouble breathing again but he won't go to the hospital. Instead he started taking an extra Lasix pill, which has helped him feel better. This makes me angry because he is not a doctor. I am glad it helps but it is not solving the big issue. It is merely temporaray relief.
     I really don't expect my dad to be around too much longer. In a way this scares me, but at the same time I think it will be a relief. I really hate to see him suffer. I hate the fact that he is scared. I hate it that a man who a year ago was so strong and independent is now weak and must rely on his family for everything. I hate knowing how scared he is. I want my dad to be here forever yet at the same time I wish he didn't have to suffer anymore. Then I start feeling guilty for feeling this way. Anyone else? Thanks for listening. I really needed to get that off my chest. You are the only people I have to whom I can say this. Thanks, Lillian.

Karen D's January 24 reply to Phyllis E's January 23, 2001 - Dear Phyllis, I am sorry to hear that your husband's health hasn't improved in the past 2 years. I responded to some of your early posts a couple of years ago, and then hadn't heard from you in a long time so I was hoping that he was getting better. I don't have any ideas about the health insurance issue but if his life insurance was through his employer, please check the policy very closely to see if there is a clause about his company having to continue the insurance at no cost to him as long as he is disabled. If you need more information, e-mail me and I'll dig up Bill's life insurance policy to find the exact wording on that clause. His employer didn't offer it to Bill when he had to take disability retirement and it was only because a friend was knowledgeable that we found out. Karen.

Connie M, January 24, 2001 - Hi, I am posting this for all of us who are not fortunate enough to have prescription cards for our loved ones with CHF. We went through all our savings and were really hurting when the man upstairs sent us a friend with info on a wonderful program. If you live in the San Antonio, Texas area, there is a place called Akers Unlimited. The phone number is (210) 829-0648.. Talk to Alice. She might have info for other states as well. In our case, Rx costs went from $700 a month to $35. Thanks again to Jon, and God bless each and every one of you. Connie M.

Mike W's January 24 reply to Phyllis E's January 23, 2001 - Hi Phyllis, I understand your anger at the insurance companies but - I hope I don't sound callous - they are what they are, and always will be.
     It sounds to me that some of the anger you have should be directed at the biggest source: your husband! You rightly feel that he is ignoring you and your family's needs and feelings. Being sick is no excuse for someone ignoring their loved ones needs! I know because I occasionally try the "But my heart condition, dear" stuff with my the wife. She is a very kind, compassionate and loving person but over the years she has gotten stronger and stronger about confronting me when I'm being selfish and well, a thoughtless, self absorbed idiot. Your description of your husband sounds too familiar.
     Yes, the man is seriously ill, but you could say we're all "terminally ill." I think that hubby needs a real wake-up call! That's hard to do, I understand, but the option is what? I strongly believe that the "sue the insurance company" route is just burn time and will get you nothing but perhaps some space to avoid dealing with the real issue. I'm sorry if I come across too heavy but I obviously have strong feelings about this issue. Peace, Mike W, who feels some kinship with your husband and his behavior.

Gabi, January 25, 2001 - Hi, My brother has CAD resulting from radiation and chemo he received while treating Hodgkin's Disease. He has undergone 2 quad bypasses and one angioplasty. The most recent bypass was 10 weeks ago and he is now experiencing rapid heartbeat, irregular heartbeat, and chest pains while exercising, with chest and shoulder pain after any large, high-fat meal. Another bypass is not an option. I'm trying to find a specialist who deals with patients with CAD because of chemo or radiation. Currently, he is seeing an MD who specializes in cardiology. We believe he needs to see a specialist but are having problems locating one.

Bill D's January 25 reply to Gabi's January 25, 2001 - Dear Gabi, I don't think there are cardiologists who specialize in patients whose hearts were damaged by chemo and radiation. There should be some, because we see a lot of folks who were damaged by the same thing. Maybe other patients could refer you to some. You will have to tell us where you live, though. Bill D.

Carolyn, January 25, 2001 - Hi, My husband has CHF resulting from chemo he took when he had non-Hodgkin's Lymphoma. He is also on Coreg and furosomide. His EF is 31%. He spends a lot of time sleeping or just resting because he hasn't the strength to do anything else. He is 82 years old and other than CHF, he's in pretty good shape. When he tells the doctor how tired he always is they tell him to give the medicine a chance to kick in. I feel very helpless in all this except that I try to cook low-salt meals and give as much encouragment as I can. Reading all the posts has helped. I also read "Success With Heart Failure" which was recommended by my husband's nurse. Thanks to all of you who write in.

Lee's January 25 reply to Gabi's January 25, 2001 - Hi Gabi, I had 7 bypasses in December of 1987. I've had to be careful with my diet and exercise ever since. If your husband was a candidate for cardiac rehab, that would indicate he could improve his heart with supervised exercise. If he wasn't considered a candidate for cardiac rehabilitation, that says he should be especially careful of aerobic exercise that makes him gasp when talking. At least, that's what I was told by my doctors.
     I've also been told that many people think that bypass surgery "cures" them and they can go back to their normal diets, including high fat. The truth is that heart attacks leave permanent damage and veins used as grafts during CABG can collapse even without the patient or doctor being able to detect it. I take my medicine regularly, eat a low-sodium diet (under 1000mg daily), with very little oil and hardly any fat at all unless it comes from fish. I'm in congestive heart failure now but I can last a long time if I am strict with myself. I look upon salt and fat as poisons. Fat is hard to digest and makes a weak heart have to work hard. I'm not a doctor, so don't take my word as gospel. I'm just someone who has been there. Good luck, Lee.

Linda Z, January 26, 2001 - Hi Jon, I wrote to Gabi since I know at least one cardiologist who specializes in seeing patients with irradiated hearts: Randy Vagelos at Stanford. It is late and I am very tired so just wanted to make sure I passed along this info to you. Also you can feel free to give any cancer patient who has CHF my e-mail address. I have developed quite a few resources over the last 3 years of running the long-term survivors list. I hope this all makes sense since I am way over my fatigue level. ;-) Linda.

Todd, January 26, 2001 - Hi, My dad went on Primacor several weeks ago and has responded very well to the treatment. I know this is usually an end-stage treatment but is there a chance that he could survive on this for an extended period of time? What other treatments should we be looking for that are on the horizon? Thank you, Todd.

Gabi's January 27 reply to Linda Z's January 26, 2001 - Hi, I had already been in contact with Randy Vagelos, who recommended a doctor who trained with him and recently moved to Dallas: Dr. John Tan. I do appreciate everyone's replies. We are following up with 3 different doctors thanks to this site.

Barb, January 27, 2001 - Hi, My 88 year old mother was diagnosed with CHF after being taken to the ER with temporary paralysis in her left side. After a week, her paralysis was gone and she was able to move about with her walker. She was doing fairly well after her return from the hospital, but the visiting nurse was concerned that within 2 days, her feet and ankles swelled considerably. We visited the doctor yesterday and he changed her water pill to Lasix, and gave her potassium pills, a breathing medicine, and a cough medicine.
     She takes her pain pills at least 3 times per day for the pain in her legs. After reading The Manual I believe she is in the final stage of CHF. We are meeting with the doctor on Monday to discuss her condition. During our visit he scheduled an appointment 10 days from now, but kept emphasizing that if there were any changes he should be paged immediately. This was repeated several times. We are unable to spend 24 hours a day with her and are feeling guilty that we can't help her. She has a Lifeline system to be able to call for help at any time. She is refusing a nursing home.
     When a patient reaches end-stage CHF, is there an estimated life span? I know we'll find out more Monday, but these 2 days are extremely stressful for us. Thanks, Barb.

Joanne C's January 27 reply to Barb's January 27, 2001 - Hi Barb, End-stage does not define a time period. This depends entirely on nature, or whatever. Your mother will do the same if you are there or not but if you feel guilty without anything happening yet, define for yourself what is possible. If the swelling is new since the MD saw her and he didn't want to see her, I would have a problem with that. Joanne.

Lillian, January 27, 2001 - Hi everyone, My dad's doctor finally got the report from when my dad was in the hospital on New Year's and he told my mom that my dad needs the oxygen so much at home because he has emphyzema. Can you believe that they never mentioned this in the hospital?! I am really upset. At least this info hasn't seemed to upset my dad too much. Well, thanks for listening! You guys really help a lot.

Marsha, January 30, 2001 - Hi, I have a friend whose doctor thinks she may have CHF. She has no insurance and has been turned down by Title IXX. She has a 20 year old mentally retarded daughter living at home but Title IXX won't give credit for her because she is not under 19. She is also asthmatic and is borderline hypothyroid. Health Fair tests showed kidney problems. To make things short, she has very little money and needs testing. Any ideas? Also, where should she start testing: CHF, thyroid, kidney? Thanks for any help!

Phyllis E, January 30, 2001 - Hi Everyone, Thanks so much for responses about the problem with my husband's life insurance. If he would have gone on disability last year before the company changed insurance companies and were sold a barebones policy for the employees, we would have had waiver of life insurance premium. This is the "what if." My husband's brother wants to pay the $700 a month and we pay $80. Then he and I would split the benefit if he dies. My husband completely shut down the idea. My frustration went off the roof. His brother told him it was a no-lose situation. If he lived 15 years he would break even and still have his brother. If he died, well, he would do well. Harry has gotten open to it now and let go of his pride about his younger brother paying his insurance premium. I am happier and in turn Harry is. Actually, this is making Harry want to take care of himself just to beat the odds. Again, thanks to all who responded. Phyllis E.

Jane, January 31, 2001 - Hi Jon and Everyone, My husband was diagnosed with CHF in July. He is still trying to lose weight so he can get down to 350 and get the catheterization done. I know he's scared. He has a lot of stress on him. I know all of you do too. The last time he went to the cardiologist they raised his Imdur because he's been having tightness and some pain in his chest. They are giving him till April to lose the weight and then they can test him.
     His last echo says his EF is 35%. It was 20%. They will do another echo in April to compare it to the last one. SSA denied us so we got a lawyer and are appealing. We have a child graduating in May. Sometimes I am afraid that Leon will miss these special times in our life but most of the time I lean strongly on God and believe that everything will be all right. I pray for you all daily, Jane.

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.

Talk to Jon Site Index