The paperwork never ends The Archives
Loved Ones - January, 1999 Archive Index CHFpatients.com

Debbie 1-2      many questions about mom's CHF
 
Paul B's 1-2 reply to Phyllis' 12-31      adjustment to Coreg & more
 
Sheila P 1-2      update & thanks
 
Marian S 1-4      update & holiday wishes
 
Michelle A 1-4      my dad is getting a heart!
 
Lee R's 1-4 reply to Debbie's 1-2      coping with CHF & more
 
Marion M's 1-4 reply to Jon's 12-31      good news about my husband & more
 
Virginia R 1-4      update on my dad
 
Barbara S' 1-5 reply to Jamie's 12-30      thanks & update
 
Barb ? 1-5      know your meds
 
Phyllis Erneberger's 1-6      update on Harry
 
Linda M's 1-6 reply to Marion M's 1-4      coping with a loved one's CHF
 
Wendy's 1-6 reply to Jon's 12-30      transplant process grueling
 
Linda G 1-7      does anyone have back pain with CHF?
 
Katherine Johnson 1-7      mom has CHF, intro
 
Karen Deitemeyer's 1-7 reply to Wendy's 1-6      dependency requirements for transplant
 
Michelle A 1-7      update and thank you
 
Mary Ann 1-7      my mother died
 
Virginia R 1-7      Linda G, Mary Ann, Katherine J & Michelle
 
Gus R's 1-7 reply to Linda G's 1-7      those annoying aches & pains
 
Robbie 1-7      Greg is in the hospital for the long haul & more
 
Sally R's 1-7 reply to Mary Ann's 1-7      our condolences
 
Sally R's 1-7 reply to Katherine Johnson's 1-7      we really do understand
 
Jon 1-7      sorry to have gotten so far behind
 
Jon's 1-7 reply to Bette's 12-25      mortality is a question with no answer
 
Jon's 1-7 reply to Robbie's 1-7      is your insurance in place? & more
 
Connie 1-8      will drinking hurt friend's CHF?
 
Jon's 1-8 reply to Connie's 1-8      yes
 
Mary 1-8      anyone in the same boat? & more
 
Sue Wright 1-8      worried about mom's CHF & drinking, & more
 
Katherine J's 1-9 reply to Virginia R's 1-8      questions about activity, depression & more
 
Jon's 1-9 reply to Katherine J's 1-9      activity levels and talking to her easily
 
Katherine J's 1-9 reply to Sally R's 1-8      can't get prognosis & more
 
Jon's 1-9 reply to Katherine J's 1-9      they really don't know - honest
 
Virginia R 1-9      update & Coreg questions, & more
 
Jon's 1-9 reply to Virginia R's 1-9      adjusting meds, dehydration & more
 
Bette C 1-9      husband very, very sick & I need to talk
 
Chrissy S' 1-9 reply to Connie's 1-7      I'm in a similar situation
 
Wendy Herrick's 1-9 reply to Karen Dietemeyer's 1-7      thanks, update, to Connie & more
 
Katherine Johnson's 1-10 reply to Jon's 1-9      wondering about hospice & more
 
Jon's 1-10 reply to Katherine Johnson's 1-10      not to worry, hospice & more
 
Robbie 1-10      update on Greg, coping & more
 
Jon 1-10      LVADs, to Robbie & more
 
Rachel F 1-10      28 year old husband has DCM - questions
 
Jon's 1-10 reply to Rachel F's 1-10      living with DCM shouldn't equal misery <G>
 
Bonz' 1-10 reply to Bill's 12-30      those sores on your dad's feet
 
Bonz' 1-10 reply to Bette's 1-9      it can be hard but you can cope
 
Bonz 1-10      Paul is sick again tonight & more
 
Robbie 1-10      update on Greg
 
John Len's 1-11 reply to Bill's 12-30      sores on feet
 
Bette 1-12      thanks & questions about nitro patches
 
Dawn 1-12      update on Gary - does anyone have an ICD?
 
Lynne Young 1-13      seeking answers about my mom
 
Lee R's 1-13 reply to Dawn's 1-12      personal experience with ICD
 
Samantha B's 1-13 reply to Rachel F's 1-10      I'm 28 with CHF - please write
 
Jon's 1-13 reply to Lynne Young's 1-13      questions, answers & more questions
 
Sheila P 1-13      getting life insurance coverage with CHF
 
Al H's 1-13 reply to Sheila P's 1-13      life insurance coverage possibility
 
Denise Goodine 1-13      questions about my dad coming home
 
Candy's 1-14 reply to Lynne Young's 1-13      getting answers, CHF info & more
 
Anita Silvey's 1-14 reply to Sheila P's 1-13      life insurance coverage
 
Paul B's 1-14 reply to Denise Goodine's 1-13      rehab, CHF info, nursing homes & more
 
Donna Santaromita 1-14      frustrated & worried over parents, & more
 
Katherine J's 1-14 reply to Donna S' 1-14      possibility & you can only do so much
 
Al H's 1-14 reply to Donna S' 1-14      another perspective to consider
 
Barb's 1-15 reply to Donna S' 1-14      their choices are their choices
 
Candy's 1-15 reply to Donna S' 1-14      possible resources & points of view
 
Candice T 1-15      seek CHD info
 
Judy's 1-15 reply to Katherine's 1-14      prognosis, our experience & more
 
Virginia R's 1-15 reply to Donna S' 1-14      making choices, support options & more
 
Robbie 1-15      update on Greg
 
Phyllis E 1-15      life insurance question & more
 
Donna S' 1-15 reply to Katherine J's 1-14      thanks, just getting info & more
 
Donna S' 1-16 reply to Al H's 1-14      they are just not getting it
 
Jon's 1-16 reply to Donna S' 1-16      maybe guilt isn't a good idea
 
Pat L's 1-16 reply to Phyllis E's 1-15      be sure to check with insurance companies
 
Traci F 1-16      seek CHD info for father
 
Debbie 1-16      40 year old husband sick - seek info
 
Katherine J 1-16      update on my mom - in hospital
 
Wendy 1-16      very confused & stressed by doc - seek advice
 
Jon's 1-16 reply to Wendy's 1-16      this is important
 
Katherine J's 1-16 reply to Judy's 1-15      info would be useful, parents & more
 
Al H's 1-16 reply to Donna S' 1-16      bigger picture, stress & more
 
Sharon's 1-16 reply to Phyllis E's 1-15      life insurance coverage
 
Rachel's 1-17 reply to Debbie's 1-16      working, Coreg, cath maybe a problem & more
 
Jon's 1-17 reply to Rachel's 1-17      diagnostics & caution
 
Katherine J 1-17      update on my mom & more
 
Robbie 1-18      my husband Greg died Saturday
 
Joseph 1-18      my mom has CHF & I am scared to death
 
Jon's 1-18 reply to Joseph's 1-18      welcome & more
 
Ruthie A's 1-19 reply to Joseph's 1-18      welcome, my son, illness & more
 
Debbie's 1-19 reply to Rachel's 1-17      ordeals previous & present & more
 
Lynne Young's 1-19 reply to Jon's 1-18      questions about my mom's CHF
 
Sally R's 1-19 reply to Katherine J's 1-18      getting things out in the open
 
Sally R's 1-19 reply to Robbie's 1-18      condolences
 
Rachel's 1-19 reply to Jon's 1-18      possible cath difficulty
 
Candy's 1-19 reply to Joseph's 1-18      welcome & more
 
Lisa 1-19      questions about husband & his job
 
Tom S' 1-19 reply to Joseph's 1-18      coping with living with a sick mom
 
Dawn's 1-19 reply to Jon's 1-18      CHD
 
Donna 1-19      how do I find good CHF doc?
 
Donna's 1-19 reply to Robbie's 1-18      condolences
 
Katherine J 1-19      mom is home, I worry about level of care
 
Jon 1-22      moving again
 
Tandy K 1-22      one year old has CHF - seek others & support
 
Rachel's 1-22 reply to Donna's 1-19      getting docs' attention, finding doc & more
 
Joseph 1-22      thanks to you all
 
Julia Ford 1-22      questions about research/trials
 
Jon 1-22      patience requested
 
Dawn 1-23      thank you & seek even more info
 
Deb J 1-23      my husband got a heart transplant!
 
Katherine J 1-23      making concessions
 
Traci F 1-23      EF, LVEDP, a-fib questions about dad
 
Jon's 1-23 reply to Traci F's 1-23      EF, CHF info, a-fib info
 
Claudia 1-23      coping with father in law's illness
 
Lisa 1-23      toddler with HCM - seek others, info & more
 
Jon's 1-23 reply to Lisa's 1-23      resources
 
Deb J's 1-23 reply to Tandy K's 1-22      don't give up hope
 
Jon's 1-23 reply to Tandy K's 1-22      resources, hope & more
 
Traci F 1-23      dad had a stroke - question
 
Patricia G 1-24      suggesting a CoQ10 booklet
 
Wendy 1-24      update & SSDisability questions
 
Nancy 1-24      thank you all
 
Bill D's 1-24 reply to Julia Ford's 1-23      valve treatments
 
Cheryl 1-24      mom gets severe nausea from Lasix - questions
 
Jon's 1-24 reply to Cheryl's 1-24      Rx options
 
Jon's 1-24 reply to Tracy F's 1-23      meds complications
 
Candy's 1-25 reply to Wendy's 1-24      SSD
 
Dawn B's 1-25 reply to Wendy's 1-24      thank you, update, SSD & coping
 
Al H's 1-25 reply to Cheryl's 1-24      diuretics, nausea & a-fib
 
Linda ? 1-25      transplant questions
 
Deb J's 1-26 reply to Linda ?'s 1-25      heart transplant
 
Lee R's 1-26 reply to Linda ?'s 1-25      heart transplant info
 
Marion M 1-26      Disability experience
 
Virginia R's 1-26 reply to Linda ?'s 1-25      St. Luke's hospital & more
 
Bill D's 1-27 reply to Claudia's 1-23      heart transplant
 
Ellen 1-28      should my husband be hospitalized?
 
Joseph 1-28      great book, first story available & more
 
Nina Straw 1-28      calcium, meds, vomiting questions
 
Tandy K 1-28      weight gain question about Brandt
 
Karen P 1-28      intro, swelling, questions & more
 
Nancy 1-28      dad's symptoms pneumonia or CHF? & more
 
Barb L's 1-29 reply to Karen P's 1-28      drug interactions & dangerous symptoms
 
Bill D's 1-29 reply to Ellen's 1-27      symptoms, meds, CHF info & more
 
Gus R's 1-29 reply to Nancy's 1-28      it only seemed sudden
 
Linda M's 1-29 reply to Karen P's 1-28      dozing off possibilities & dangers
 
Paul M's 1-29 reply to Karen P's 1-28      apnea, meds, doctors & more
 
Charlie 1-29      seek info on the Dor Procedure
 
Paul M's 1-30 reply to Jon's 1-29      CoQ10 dose, info sources & more
 
Bill D's 1-31 reply to Charlie's 1-29      the Dor procedure
 
Jane 1-31      what to ask doc before surgery?
 
Lesley H 1-31      seek ideas for keeping mom's mind active
 
Jons' 1-31 reply to Charlie's 1-29      Dor procedure


Debbie, January 2, 1999 - Hi, I just found out my mother has CHF. At least, that's what the doctor says. She is turning 60 in January of 1999. That's not that old. Can anyone tell me more about this condition? Is she going to die, is it treatable, cureable? At this point, I am very worried. I have no idea and need lots of help. Any information would be greatly appreciated. Thanks, Deb Parker. debparker@pacificcoast.net
 
Jon's Note: Have you read The Manual yet?


Paul B's January 2 reply to Phyllis' December 31, 1998 - Hi Phyllis, You said your husband was just diagnosed with CHF, but is up to 25mg Coreg twice a day? Has he been on Coreg for awhile or did they start him on it with the CHF diagnosis? Two things: everything I've seen on Coreg recommends a phase in to the maximum dosage which is weight dependent. The other is that it takes most folks awhile to adjust to Coreg and fatigue is very common during the adjustment. For many of us loved ones, the more we know, even if it's not the greatest news, the better we cope. Bless you and your husband in this New Year! wwhc@miworld.net


Sheila P, January 2, 1999 - Hi, This is my second time posting, and I just wanted to say thanks to everyone out there in this forum. It is so very helpful to read all the input you all have. Every little bit of info is needed. I just found this site a few days ago, and am on it almost daily. My dad is feeling and looking much better. It seems that another "crisis" has passed. Prayers and blessings to you all. spollock@tiarayachts.com


Marian S, January 4, 1999 - Hi everyone and Happy New Year, I have not posted for some time, but have tried to keep up with reading the posts. I am so glad Mary is going to be coming home. My husband Bob is kinda holding his own, so to speak. His sugars are much more stable and his chest pain is usually resolved with one nitroglycerin. In less than 6 months, he has been diagnosed with CHF, and new onset insulin dependant diabetes. The angiogenesis procedure (VEGF) was not really successful, but only another cardaic cath would show true results. Bob did get approved for Disability by SSI and he got his first check in December. It has been one less stress in our lives. Our oldest daughter is getting married 1-30-99 and moving from Philadelphia to Clearwater, Flordia. In as much as we want the wedding to be over, we will miss her. Hopefully the added stress of me working for the Allegheny Health Care System, its bankrupcy, and being bought by an agency called Tenet is over. 1998 wasn't the best year for us, but God has given us the strength needed to meet each day with hope. Msoda1@aol.com


Michelle A, January 4, 1999 - Happy New Year to all, I just wanted to spread some good news about my father and ask that you keep him in your prayers. On January 3 at 2:30AM, he was notified that there was a heart donor for him. He has been waiting since December 1 in the hospital. Heart transplant surgery began at 12:30PM January 4, and we expect to hear from the surgeon soon. I also wanted to thank all of you for your continuous support, advice and friendship. Please keep my father, Jim (age 54), in your thoughts and wishes during and after transplant. Thank you! mabram@bellsouth.net


Lee R's January 4 reply to Debbie's January 2, 1999 - Hi Debbie, I wanted you to know that I am the same age as your mother and your post caught my attention. I'll be 60 in March and was diagnosed with dilated cardiomyopathy in 1997 (without the congestion). There is a lot of very good information on living with CHF at Jon's Place. As Jon suggested, read The Manual first and then learn as much as you can about sodium (the less, the better) and nutrition. There are some really good meds that doctors use. One is an Ace inhibitor and the other is a beta-blocker, usually Coreg. My first cardiologist gave me 5e years but my doctor now feels that no one can really predict how long we have. So many of us here at Jon's Place have gone over the 5 year mark! CHF is treatable. It is not generally "curable," but there are things that help. Most important, read all you can about it, there are also links to other sites at Jon's, and keep writing to us. Your mother may want to post on the other section which is for those of us who have CHF. Believe me Deb, you have found a great site! Take care and keep in touch. Lee. LeeRoush@aol.com


Marion M's January 4 reply to Jon's December 31, 1998 - Good news, My husband woke up on New Year's Day feeling much better. He is still grey and coughing but he can lay down for a few hours at a time and has a little more energy. He seems to be getting a little stronger each day. This latest crisis is over for now. The amoxicillan probably did the trick for his bronchitis or whatever it was, and we threw away the decongenstant and ventolin. We now have time to get him seen by a good internist and then see his cardiologist again at the end of January.
     Living with my husband's illness is the hardest thing I have ever done. The daily fear that this may be the last day, the last meal, the last family gathering, the last embrace. Sometimes I wake in the night and just watch him sleep. We try to take each day as it comes, live it fully and thank God for all the blessings he heaps on us but,..., especially when he has these acute episodes, that inner place in my heart goes cold and just stays that way until he feels better again. This last episode lasted almost 3 weeks and even my friends and co-workers were beginning to comment on what they saw as my "depression." The only tangible good that has come from all this is a measurable increase in my daily prayers. We have even been able to pray together when he gets very bad.
     Thank you again for being here for me when I was starting to panic. The only other person that really knows what we are going through is my husband and he is coping with his own anxiety and fears without dealing with mine too. You are such a support and and a blessing. monty@lightspeed.net
 
Jon's Note: Credit the prayers, not me. <G>


Virginia R, January 4, 1999 - Hi, On Sunday, we were preparing to head home toward San Antonio, when my Dad told me that he wasn't losing any fluids. He had taken 2 Zaroxylin this morning and had been taking extra diruetics for the past few days but his weight was continuing to increase. I gave him 3 hours to see results and if he didn't, we'd call Scott and White. I called and we were told to come in. I sent my family down home and drove him to the hospital 2 hours away. We didn't get an answer about the weight and fluid retention but learned that his potassium was low. They mentioned that it "sounded like" he had an arrhythmia. They gave him an EKG and didn't tell us what it said. His chest x-ray said all was clear. They told him to call the cardiologist in the morning, Monday, for a 48 hour consult. He is scheduled for labs Monday morning, which will be faxed to S and W Hospital. I think this is for the Coumadin. We'll see what happens tomorrow with the cardiologist's appointments.
     He's having pain in his left hand, especially the middle finger, which just started suddenly. We wonder if it's arthritis, fluid retention, or something else. Dad is so tired of fighting all the time. It's hard when he has to do so much of it on his own. As usual, thank you all for being here. It's just so good to have someone to vent with. Hopefully, my uncle will take the second leg of the doctor appoinments if they don't happen by tomorrow, and I'll take the bus home. At least, I've found a route that doesn't stop much on the 250 mile trip! <G> However, if we don't get answers, perhaps I should summon up my brother and sister and show up to the next appoinment in force, huh?! Just sign me, Aggravated in Texas. giniroberts@hotmail.com


Barbara S' January 5 reply to Jamie's December 30, 1998 - Hi, Thanks to those of you who replied to my first post. Jamie, a few other people have told me their messages came back - just try again. My daughter has been doing very well since her diagnosis of peripartum cardiomyopathy in late October. She'll be having the first echo since diagnosis this Friday, so we are anxious to see the results. stonebarbara@netscape.com


Barb ?, January 5, 1999 - Hello! First of all, I commend all of you (and especially Jon) who have made this forum interesting and informative. My father was just hospitalized again for CHF after a long history of cardiovascular and pulmonary disease. He is 68. At age 52, he had his first coronary bypass surgery and at age 66, he had his second. He has a history of asthma, mild COPD (emphysema), and chronic bronchitis. He also had a silent MI sometime prior to his first bypass. Due to other health problems (an occluded carotid artery, a necrotic gall bladder, and a ruptured spinal disc), the resultant surgeries further weakened his heart and precipitated the CHF. Immediately after his second coronary bypass surgery, he developed life-threatening arrhythmia and was started on amiodarone (Cordarone). After about a 1½ years, he developed a worsened cough (coughed constantly) and became short of breath with the slightest exertion. He also gained weight typical of a CHFer and had crackles and wheezes in his lungs. He complained of his "heart jumping out of his chest" during the night and during mild exertional activities. Radiographs of his lungs revealed some pulmonary infiltrates suggestive of asthma and COPD with some fluid accumulation in the lower lung fields. So his regular doctor increased his diuretic and started him on prednisone therapy. All this time he didn't complain much, as he was told it would be a matter of regulating his medications.
     To make a long story short, after 10 days of hospitalization and numerous tests, the specialists determined that the CHF was due primarily to toxic effects of Cordarone. In essence, the Cordarone was slowly killing him by fibrosing (scarring) the lung tissue, making it impossible for him to diffuse oxygen and carbon dioxide properly. As we all know, if the heart doesn't get oxygen, it can't function! ) This is a serious but common side effect of Cordarone. Cordarone has potentially severe side effects. The message I want to make is know your medications, and the good and bad effects of each one! Had my father been properly educated about the side effects and scheduled for regular re-checks and chest x-rays, this may not have happened. As it is now, he will probably remain on a portable 02 tank for the rest of his life because the pulmonary changes from Cordarone are usually not reversible. I am not blaming his doctors or the drug itself, I just want to emphasize the importance of knowing what drugs you are taking and the potential adverse effects of each. I hope this message helps someone else. Best of luck to all of you in 1999! Barb. blembkedvm@hotmail.com


Phyllis Ernsberger, January 6, 1999 - Hi everyone, I have not posted for a long while. My husband Harry has lost about 40lbs with the Dr. Atkin's diet despite the high salt content. He just made 51 on 12-31 and is still smoking and drinking to intoxication. Yesterday, I went to the funeral home to get information on our burial costs, came home and I sat down to go over the info with him. He asked me why I was doing this. I said, "The doctor said if you continued to drink to intoxication, you won't wake up one morning. I just want to be prepared." Later that day, Harry said I know you are worried about my drinking and dying (CHF/cardiomyopathy), so I am going to quit. Amazing how I didn't have to use a rolled-up newspaper, yell or criticize. I hope it did make an impact. I miss you guys, Phyllis. PErnsberge@aol.com


Linda M's January 6 reply to Marion M's January 4, 1999 - Hi Marion, I'm really glad your husband is feeling better. You say your friends call your response to his illness "depression"? It seems par for the course for those of us who have watched over our loved ones with CHF for a while. We seem to always be waiting for the "other" shoe to fall. <g> I hope things continue to improve for you both. Linda M. paulmcferrin@worldnett.att.net


Wendy's January 6 reply to Jon's December 30, 1998 - Dear Jon, Thank you for your response to my chemical dependency question. Unfortunately, we believe you are probably right, they will not bend. It seems that if you are not well enough to drive a car and sit in frequent meetings for long periods of time, and also able to be away from whatever is left of your job and the family's main source of income, for most of your few "productive" hours, you cannot be a candidate for a new heart. This is sad and unfortunate for us. If anyone has had a similar experience, please let us know. Is there no allowance for your CHF condition? I suppose if you end up spending many days in the hospital due to "meeting" exhaustion, they can give you all the inpatient rehab you need! There's not much else to do. Thanks for your support and this forum to exchange information. As you can see, we are very disappointed by the transplant process so far. wjh@ptcom.net


Linda G, January 7, 1999 - Hi, My husband is the one with CHF. I am the one who loves him. My quick question is this: in addition to the fatigue, sleepless nights, bloating, cool hands and feet, does anyone's back hurt? His cardiologist didn't seem concerned, but I am. linder@kansascity.com


Katherine Johnson, January 7, 1999 - Hi, This is my first time at this site. I have recently become the primary caretaker for my Mother who has CHF and my life has changed immensely. I don't really know too much about the disease and am finding out very little from Mom's doctors so I've started to look into the Net for answers. When I stumbled on this site, I realized looking for support might be wise as well. Katherine. kathj@sfbay.net


Karen Deitemeyer's January 7 reply to Wendy's January 6, 1999 - Hi, Wendy, My husband is in the process of being evaluated for a transplant, and so far we have not been told about any type of chemical dependency testing or rehab. Bill drank (but not excessively) up till his cardiologist told him that he had CHF and he needed to stop. He hasn't had a drink or beer since, and that has only been a little more than 3 months ago. I will let you know if anything similar is brought up next week when he goes back for what should be his final tests. All the heart tests have been completed. He is not able to work at all right now, and would have the same problems as your husband with driving and concentrating during a long meeting. You haven't said if you have talked with your local cardiologist about the requirement. Good luck. Karen. deitemey@kua.net


Michelle A, January 7, 1999 - Hello everyone and thank you all so much for keeping my father and family in your thoughts and prayers for a healthy recovery. Today was day number 3 and so far, so good. He is doing great - looks good, sounds good and says he feels good. Looking back, it's been a rough 4 months ever since we found out my dad had CHF. Words cannot even described what it means to have new life - a new heart - for my dad. Tomorrow he will leave ICU and be moved to a post-transplant recovery room. I know the path doesn't get any smoother from here but we're ready to take on the tough as long we've got him. Please remember and spread the word that organ donation is a wonderful thing. "Share your life, share your decision." http://www.shareyourlife.org/ I'll keep you posted! mabram@bellsouth.net


Mary Ann, January 7, 1999 - Hi, My Mother passed away today. I want to thank all of you for your kind wishes and all your prayers. I know that now she is at rest. Thank you all again. Fondly, Mary Ann. carmi1042@aol.com


Virginia R, January 7, 1999 - Hi all, Linda, Hopefully a sore back is related to a mattress, meds or something else, but just in case, has he had his renal output checked recently? Sometimes my father complains of an ache in his kidney, which can be masked as back pain. Good luck and I liked the way you announced that you're the one who loves him. I found that particularly beautiful.
     Mary Ann, I'm sorry to hear of your loss. Stay around and visit with us whenever you want, or can. My prayers for peace are lifted up on your behalf.
     Hi Katherine, Welcome! This place has been a blessing to me. My sis and I are the primary caretakers for my father. My sis does the hard stuff, the everyday tasks, while I tend to work on the doctor side of stuff from several hundred miles away. I've found this to be more supportive than any hospital or clinic. Many of us have become like family here. If you have a question, just feel free to ask. Maybe someone will have had a similar experience.
     Michelle, I'm happy for you and your dad. Y'all continue to be in my prayers through the recovery process. I'm at home now if you try to e-mail me. If you don't, I understand. You have a lot going on and a lot to be thankful for! giniroberts@hotmail.com


Gus R's January 7 reply to Linda G's January 7, 1999 - Hi Linda, A quick answer to your quick question: Yep, mine does. ;~) Now for the long boring details: At first I had backaches most of the time but as time has passed (6 years), they have either become less severe or I have adjusted to having them. I've never spoken to a doc about them but always wondered if they weren't another example of organs or muscles not getting good blood supply and making the deficiency known by a few aches and pains. Gus R. gus13@net66.com


Robbie, January 7, 1999 - Hi, Just a quick note to all my CHF friends, Greg now has a heart that measures about 5 feet tall by 3 feet by 3 feet. On New Year's Day, he had a seizure that put him that into the hospital. His stats were BP 40/0, pulse 30, and temperature 92°. They tried a ballon pump but that failed so they had to open his chest and install 2 tubes on each side of his heart. He will remain in the hospital until he receives his new heart. I would love to explain in more detail what they are doing for those of you that are very new to this CHF life. However, I must get to the hospital to be with him. So Jon, if you wouldn't mind, could you please explain what is happening to Greg at this time. Everyone's prayers are needed and very much appreciated. For what he is going through at this time, the doctors are shocked at how well he is doing. Infection is our biggest concern now. God's blessings to you all. Robbie. styners@yahoo.com


Sally R's January 7 reply to Mary Ann's January 7, 1999 - Hi Mary Ann, I am so sorry to hear of your mother's passing. I know that you take comfort in the fact that she is now at rest. My prayers are with you. Sincerely, Sally R. therays@gte.net


Sally R's January 7 reply to Katherine Johnson's January 7, 1999 - Hi Katherine, I'm glad that you found this site. It has helped me understand my Mom's CHF. I too am the primary caregiver for my mother. She is in the third month of home hospice care. The changes in her condition are coming daily. When she entered the program, her doctors gave her about 6 months to live. I am dreading the coming months. I want you to know that you have support from people who know first hand what you are experiencing. Sally R. therays@gte.net


Jon, January 7, 1999 - Hi everyone, I'm sorry to have gotten so far behind answering posts. I've had my hands full with other sections of the site. Poor excuse, but the only one I have. :-) I am sure glad so many particpate here. It really lifts a load off me and I appreciate you all very much! Jon.


Jon's January 7 reply to Bette's December 25, 1998 - Hi Bette, Most of us enter a long, slow decline but up to 40% of CHFers will have Sudden Cardiac death. My EF was 13% at diagnosis, so I had lost about 80% of my heart function. Here I am more than 4 years later, still typing away, so there is no way for anyone to know how long we will live, despite our weakened hearts. Jon.


Jon's January 7 reply to Robbie's January 7, 1999 - Hi Robbie, Has the insurance covered everything? Please keep us posted. I'd explain about Greg but I'm not sure what I am explaining, so I'll wait to hear from you. Jon.


Connie January 8, 1999 - Hi, I have a friend who was diagnosed with CHF about a year ago. During this last year it has also become apparent that she's an alcoholic. She went to a couple of AA meetings but hated it and says she'll stop on her own but hasn't been successful. The doctors have told her that they believe her heart condition has improved. However, during the holidays I'm certain she drank too much. This week she was taken to the emergency room with symptoms similar to those she had when she was diagnosed with CHF (coughing non-stop for several days, shortness of breath, etc).
     My question is this - could her excessive drinking of wine have precipitated another heart event? The doctors are calling it pneumonia, which I guess it is but I can't help but wonder what part the wine has in all this. She hasn't told any of her doctors about her drinking problem. Her sister tried to once but the doctor wouldn't talk to her without the patient's permission. Just exactly what problems can it cause if a CHFer continues to drink? Thanks a lot for any insight you can provide.


Jon's January 8 reply to Connie's January 8, 1999 - Hi Connie, The answer is yes. It's the booze. It will kill her if she doesn't stop. Alcohol is classified as a cardio-toxin, a literal poison to the heart. You can get more about how to handle CHF at The Manual. Don't be a stranger. Jon.


Mary, January 8, 1999 - Hello, I just found your site. I am hoping to find other parents of children with dilated cardiomyopathy. My little boy died of this when he was 6 months 23 days old. His story is posted on the Net at http://www.geocities.com/Heartland/Prairie/7193. It is very difficult to live with the way things turned out but does get easier. It is very sad to realize that things are getting easier. I thought I would never be able to go on. If anyone is out there in the same spot, please e-mail me. josiahsmom@hotmail.com


Sue Wright, January 8, 1999 - Hi, My mother was diagnosed with CHF. Today she is in the hospital as I write this. I am not sure what to expect or what to do, especially since I live in Arizona and she lives in Michigan. Any advice would be greatly appreciated. My mother is very overweight and a heavy drinker, which we have tried to address. I am concerned about how her drinking will affect her CHF. After reading some of the posts that were up, I have become more concerned about her health. Thanks to anyone that replies to this. sue_wright@hotmail.com


Katherine Johnson's January 9 reply to Virginia R's January 8, 1999 - Thanks for the welcome. My Mom is 81 and many might assume that means she's going to die soon anyway, but anyone who knows my Mom knows that she could go on for another 20 years easily. They call her the Energizer Granny so this disease has severely impacted her lifestyle, needless to say. However, the last few days she's been getting her energy back and puttering around the house. I read in The Manual that she needs to limit activity or be knocked out, but it's hard to tell her what to do (tactfully). I've had to keep my distance too, because I have a cold and don't want her to get the germs. I can tell that she's scared but I don't know how to talk to her about it. The doctor gave her some tranqualizers to deal with the anxiety. Is this common? Anyway, thanks again for replying. kathj@sfbay.net


Jon's January 9 reply to Katherine Johnson's January 9, 1999 - Hi Katherine, To clarify, CHFers need to listen to their bodies and learn how much activity they can manage without getting knocked out in the following few days. Up to that point, exercise (activity) is very good. See Heartbytes. Have you thought about printing out The Manual and just leaving it for her to read at her leisure? Jon.


Katherine Johnson's January 9 reply to Sally R's January 8, 1999 - Thanks for your welcome. My mom's doctor is not giving us a prognosis or time left to live estimate. I think it's because my mom is 81 so they might just assume she's on borrowed time. I don't really think that's fair though, because if they know something about this, they should let us know to better prepare emotionally. From reading other posts, I realize I didn't have any idea about the scope or impact of this disease. It's frightening and I appreciate how the people who have the disease and their loved ones carry on with life with spirit and quality of life. Thank you for sharing. Katherine. Kathj@sfbay.net


Jon's January 9 reply to Katherine Johnson's January 9, 1999 - Hi Katherine, Cardiologists really cannot predict when CHFers will die with enough accuracy to make it ethical to tell us. Any cardiologist who says a person will die of CHF in such and such an amount of time (unless that person is on his deathbed in CCU) is showing off his ignorance, because they just really don't know. I doubt it has anything to do with her age, he's just being honest if he says he doesn't know. It's frustrating but medicine is eons away from being omniscient. :-) Jon.


Virginia R, January 9, 1999 - Hi, Dad continues to have a new adventure each day, it seems. He now takes insulin injections in the leg, as the doctor seemed to think this might be better due to all of the fluid accumulation in his abdomen. He has tried to strictly and stringently reduce sodium and fluids. He seemed to have lost most of the fluid he gained last week by Tuesday morning. Then his insulin regulation went a bit crazy. I'm sure in relation to less fluid retention, faster absorption. He overcompensated the low blood sugars and by Wednesday night, his blood sugars were at 410! This morning he began to gain fluid again. He said he was up at 3:30AM, feeling very ill. He took his blood pressure and realized that it was dropping quickly: 84/60, 79/50. He called the cardiology nurse, who told him to drop the evening dose of Coreg. He's now at 25mg a day until he sees the cardiologist on Monday again. His blood pressure was better at 6:30PM, at 91/71. Is it possible he has peaked with Coreg and must now taper off? I guess the fluid accumulation is what bothers me the most, when I know that he's really doing his best to watch everything. Thank you all. giniroberts@hotmail.com


Jon's January 9 reply to Virginia R's January 9, 1999 - Hi Virginia, How is his dose of Ace inhibitor? My cardiologist usually tapers his CHFers' Ace inhibitor dose down before starting them on Coreg if BP is a possible issue. Then, after reaching what he believes to be an optimum dose of Coreg, he starts inching the Ace inhibitor back up until he reaches a balance of the two he thinks will bring the most benefit. Some patients cannot manage Coreg but most can. Coreg gives a lot of people a really rough time until they get used to it, and then they often see improvement in symptoms that is worth the struggle to get there. It can take 6 months for the "worse" to get "better" sometimes, though. Be sure he doesn't get dehydrated, because this can drop BP and cause lightheadedness and fatigue as well. There's a balance in fluids you have to strike and keep. It takes practice. <G>
     Watching a loved one struggle with CHF must be very tough - it's an experience I don't know. Having lost a father and a father-in-law to cancer, though, I have a good idea of the constant tension involved. Hang in there and talk to your dad often. Family support is a close second to prayer for helping us CHFers cope. Jon.


Bette C, January 9, 1999 - Hi, I have not posted to this site before but I have read The Manual and the posts from time to time, and find them to be very helpful. My husband has CHF, renal insufficiency/chronic renal failure, severe COPD, and coronary artery disease, to name a few. As you can imagine, he takes a slew of medications. In January of 1996, a blockage in his right carotid was suspected and when a catheterization was done, it was discovered he had heart blockages also. He had carotid surgery and open heart surgery (6 way bypass), and about a month later, he got very sick and it turned out he had kidney failure. While being hospitalized for kidney failure, he had pneumonia/congestive heart failure. He has been bedridden for the most part of the last 3 years. He has been hospitalized so many times we quit counting. He is constantly battling fluid and swelling. Now he has developed severe pain in his lower right side, which the doctors say is gallstones and he cannot be operated on because of his lungs. The only thing that can be done is to treat him with pain medication. I guess I want to talk to someone about this who understands the tears, the hurt and the frustrations of a loved one being so sick. His doctors really do not say much except "hang in there." Thanks so much for the opportunity to share my situation. bettec2@flash.net


Chrissy S' January 9 reply to Connie's January 7, 1999 - Hi Connie, My mother has CHF and continues to smoke 2 packs a day, and continues to drink and eat foods loaded in sodium. It is very frustrating but then the drinking has always been frustrating. She also has emphysema and cirrhosis of the liver. I can't make her stop and I can't make her care. I am at a loss as to what to do. I just do the best I can. That's all you can do too, just be there for your friend. Maybe they will realize someday what they are doing to themselves and the people who love them. I hope so. Chrissy. csmith2177@aol.com


Wendy Herrick's January 9 reply to Karen Deitemeyer's January 7, 1999 - Hi Karen, Thanks for responding to my plea for advice from others in the same predicament. We have not had the opportunity to speak with any cardiologist yet about much of anything. We have only been told to call in to the "heart failure team" with medical problems or go to the emergency room if it is bad. This is so frustrating for a "newbie!" We have obtained a copy of my husband's test reports and are getting them interpreted by a local cardiologist next week. After that, we have our "first" appointment on January 13 with the heart failure team since he went into the hospital as an emergency November 13 - 22. For 2 months, we have been "winging" it, except for the chemical dependency evaluation, which still has us in shock. We will let you know what we find out. I remember the transplant people saying that becoming a recipient takes a lot of hard work on the candidate's part. I guess I know now what they were talking about but CHFers have a lot of hard work just being up for the day! A note to Connie: it is a real shame that your friend would have such a horrendous time getting a new heart. Tell her of our experience, and my husband is not even an active drinker now! Thanks to all of you on this site, and especially to Jon. wjh@ptcom.net


Katherine Johnson's January 10 reply to Jon's January 8, 1999 - Hi Jon, I hope that I wasn't being tactless and insensitive to ask such a question about doctors predicting length of life. I mostly was wondering if there would come a time when we should enlist the help of hospice, for example, in our lives. It helped with my father a great deal to have a unified family dealing with that process of his life. Thank you for providing this site for caretakers as well as those with CHF. Katherine. kathj@sfbay.net


Jon's January 10 reply to Katherine Johnson's January 10, 1999 - Hi Katherine, Not at all! I'm so used to CHFers asking why their doctors aren't telling them how long they will live, when those doctors "probably know," that I almost answer that one on auto-pilot. Doctors really don't know. I believe that hospice still is meant for those with 6 months or less to live. CHFers have a harder time than most getting hospice because their doctors don't know how long they will live. Sort of a catch-22. However, I also believe that recently some hospice/insurance rules were slightly loosened in recognition of heart failure patients, so be sure to call hospice and ask! They'l be happy to answer your questions. Jon.


Robbie, January 10, 1999 - Hello Everyone, The news about Greg does not get better. I will try my best to explain what he is going through right now. On January 1st, he had a seizure and was placed in the hospital. His natural heart has given up and a balloon catheter was placed in his heart but that did not work. They had to open his chest and insert the tubes for an external heart. Two tubes about the size of a quarter were placed on both sides of his heart. The chest was closed, with the tubes lying under his chest. These tubes come through his upper abdomen to the surface. Attached to these each set of tubes is a U-shaped cylinder that recycles his blood back through his body. A large machine that is referred to as a VAC pumps these cylinders. I will update you on this machine when I get more information. There are also several drainage tubes in place. His oxygen level has fallen very low and he is keeping a lot of fluids on board, especially in his lungs.
     He became very confused and has not been aware where he is or what is happening to him. They have had to restrain him and manually respirate him. He is heavily medicated to keep him in a semi-comatose state. He is in tremendous pain, emotionally as well as physically. He was refusing to eat and they are now placing a feeding tube in. The hope is that he will regulate within the next few days and they can remove the feeding tube, the forced oxygen and respirator. The artificial heart will remain until a new heart is found. It could take hours, days, weeks, or even months. Greg has 0+ blood, which means that the blood supply is better than most for him. However, it also means that there are more CHFers with type 0+ blood awaiting a new heart, too. Fortunately, he is at the top of the list now. No amount of preparation can prepare someone for the shock you will experience when you first see a loved one on an artificial heart like Greg has. It is very, very overwhelming. Not every CHFer will have to go through what Greg is. Most get a heart before they reach this point.
     To be honest with you, the hardest part to deal with is that he is so mentally out of it. Yet, they say that this is very common. Some of what he is going through comes from his being in the hospital and having his sleep patterns so disturbed. Some of it comes from his mind becoming so overcome by what is happening that it blocks out all that it can. Some of it comes from his oxygen and the extra fluids and some from the medications he is taking. From what I have been told, the chances are very high that he will not remember anything about all this. That is certainly what I am praying for. I am with him most of the day and night. I have stopped working but am giving a lot of thought to getting a job in the hospital. I'm there all the time anyway. Greg's short-term disability is in place now. His HR department at work has been very helpful. About the changing of the insurance, it is still up in the air. The hospital says one thing and Greg's HR department says something else. Both insurance companies say they would cover him but the hospital disagrees. I have until Tuesday to make my decision.
     Please note: We are very fortunate that Greg gave me Power of Attorney before he became unable to sign this kind of paperwork himself. You never know when something like this could happen. Please, if you do nothing else this week to prepare for the time when your loved one goes in for their new heart, please get a Power of Attorney signed. Keeps extras copies available - you will need them. I must go to church now and then to see my sweetheart.
     One last note before I go, take care of yourselves, if you are not healthy mentally and physically this will be very hard on you. You cannot take care of your loved one if you break down. Seek out any and all support that you can. Please don't forget that there are other people in your life that need your attention too, especially children that are still at home. You will feel overwhelmed much of the time but if you stay healthy yourself and pray, pray, pray so that you can. God loves us all! styners@yahoo.com


Jon, January 10, 1999 - Hi, I want to thank Robbie for taking the time to keep us up to date. I know she is very, very short on time right now. I thought she meant an LVAD but I did not want to jump in and get it wrong. What she describes is what is called an LVAD, or Left Ventricular Assist Device. There is a smaller, electrical type that CHFers can use at home while waiting for transplant. However, if your condition requires hospitalization/constant care during the wait, you would probably get the type Greg now has, which is air powered (pneumatic) and much larger. Make no mistake, these appliances are life -savers!
     Robbie, hang in there. Our prayers and best wishes are going out for you and Greg all the time. Thank you so much for taking the time to update us. We appreciate it very much and if there is anything we can do to help you - look up specific information or what-not - you just let us know. Jon.


Rachel F, January 10, 1999 - Hi, My husband was diagnosed with idiopathic dilated cardiomyopathy last year. We are both 28 and this was a shock. His EF was 23% at the time and he seems to be holding his own. He has yet to miss any work and he took up rollerblading and softball this summer, although he did stop power lifting - doctors orders. The doctors are pleased and quite surprised. I need to know if this is typical of a young patient. I can find research stats but they include people who would probably die anyway from old age. I get the feeling that his cardiologists don't know quite what to do with him because he is doing so well. The transplant doc that he met with spent about 5 minutes with him and the most profound thing she said was that 5 years ago, they would have told him to sit on the couch. Is there a cardiac center that specifically specializes in the young DCM patient? We would like to go for an evaluation or send his history. I wish I had found this site last year.


Jon's January 10 reply to Rachel F's January 10, 1999 - Hi Rachel, I am not aware of any centers specializing in DCM patients in your husband's age group. I don't think your husband is that far from the usual experience, though. Many of us had DCM for a year or more before being properly diagnosed and treated. If we had been treated sooner, we probably wold have deteriorated far less. I was diagnosed at age 36 with an EF of 13%, and aside from dropping my 6 day a week weight training, I did extremely well for a year and a half. After 1½ years, I had a very slow decline. I had DCM about 3 years before it really started consistently sending me into CHF and stopped me from doing what I wanted. At that point, I became far less active and now wouldn't exercise at all except that the people here would never let me hear the end of it if I didn't follow my own advice! <G>
     Tell your husband to listen to his body and be very aware of warning signs but not to let DCM rule his life. He's young and should enjoy life. Mind you, that doesn't mean he should go back to power lifting <G> but being active is actually good for him as long as he doesn't get wild with it. Don't be a stranger. Jon.


Bonz' January 10 reply to Bill's December 30, 1998 - Hi Bill, Could the sores on your dad's feet be plantar warts? If so, keeping them moist relieves the pain. Paul has had these. He may need to soak his feet in Domeboro tablets. These warts grow inward and are just like a hard callous on the bottom of your foot. bonzdeck@bellsouth.net


Bonz' January 10 reply to Bette's January 9, 1999 - Hi Bette, Welcome to Jon's Place. You are describing basically what everyone here is dealing with. Your husband having a new relationship with lots of medications will be your new way of life. The hospital might be a regular hangout. We are on a first name basis with ours, and they have a room reserved for Paul. I've been through the tears and the point of not being able to say "Hi" without going off on a crying jag. You need your time for sorrow. Then you have to decide that you have to keep up your spirits for you and your husband. Paul senses when I am frightened for him. It can be tough and frightening from all aspects. Keep your chin up and know we're here. bonzdeck@bellsouth.net


Bonz, January 10, 1999 - Hey, Paul is sick tonight. He is out of rhythm again and is staying at about 30 for a pulse rate. Every time this happens, he goes into sweating profusely. Bill, thanks for the previous info. I did get that. bonzdeck@bellsouth.net


Robbie, January 10, 1999 - Hello Everyone, Another quick update: Greg is still being heavily sedated and will be for probably another 2 days or so. His fluid levels are coming down but his blood pressure is still bouncing all over the place. The machine I was referring to is made by Thoratec. They have a great site at http://www.thoratec.com/. Once in there, go to the product info section. The picture shows just what Greg has. Greg needs the dual or bi-ventricular assist device; some patients only need the LVAD, as Jon stated on January 10th. What a wonderful machine. God continues to work his miracles. Blessings to you all. styners@yahoo.com


John Len's January 11 reply to Bill's December 30, 1998 - Hi Bill, The sores on his feet could be the result of lack of oxygen to the feet because of diabetes or poor circulation but his doctor surely is aware of this. John. a_lenny6@hotmail.com


Bette, January 12, 1999 - Hi, I would like to thank all the nice comments I received from people after mentioning my depression from putting my dad in a nursing home on Christmas. This forum is very helpful and I have been learning a lot about CHF. I do have a few questions: Can a person go into a cardiac arrest with a nitro patch on? Why do they take the patches off at night? wsh3rd@aol.com


Dawn, January 12, 1999 - Hi all, I haven't posted in a while but have read the postings daily. I just thought I'd update a bit. Gary had his first zap from his ICD on Sunday and then it hit him twice on Monday. It was pretty scary for him. It made him pretty dizzy and nauseated for a bit but after a good night's sleep, he was feeling ok today. Does anyone have a family member with an ICD (internal cardioverter defibrillator)? I would love any input. Blessings all. Dawn. phoenix@mt-vernon.com


Lynne Young, January 13, 1999 - Hi, I have been reading to learn more about CHF. My mom has it and was scheduled for a cath tommorrow but after having her blood tested today, they called to tell her she has too much potassium and they wanted her to have her blood tested again on Friday and would then decide what the next step is. I am so frustrated! No one will tell me anything. I went with her to have the echo and could not find out anything. She doesn't ask any questions and I can get the answers. Is it good news or bad news that they have decided to hold off on the cath? I work full time and have a family an hour away from her. She does have a lady live with her. It is just me and my brother, and he is never in town and when he is, he just worries her more with his problems. Do all CHF patients end up dying? Please someone help me. lyoung6780@aol.com


Lee R's January 13 reply to Dawn's January 12, 1999 - Hi Dawn, I'm one of the ICD persons (since June 1998) and had my first shock on Christmas morning. Actually, it scared me and my whole family, as we were all having fun doing breakfast together. I really did not know what had happened and they thought I was a bit wacky. Well, it wasn't too bad for me and, while I was upset for awhile, my daughter put the dog on my lap and I did relax and did not feel any nausea. I called the EP doctor and he said if there were no more shocks, I could keep my regular appointment but if it happened again, he wanted to see me. If there were multiple shocks, I should call 911. I suppose every case is different. If you or Gary want to write me direct, please do so. There is also a good site at http://www.zaplife.org/. I hope Gary is ok. I'm trying to consider the shock my special Christmas present. I hope that does not sound too bizarre! Tell Gary that he has had his quota of shocks for the new year! Bestest, Lee. LeeRoush@aol.com
 
Jon's Note: See also http://www.implantable.com/. They have forums also.


Samantha B's January 13 reply to Rachel F's January 10, 1999 - Hi Rachel, I am a 28 year old CHF patient, diagnosed 2½ years ago. I'd love to talk to you more. Please feel free to e-mail me. Take care, Samantha. sam0101@aol.com


Jon's January 13 reply to Lynne Young's January 13, 1999 - Hi Lynne, I think you have a lot of questions you didn't ask. <G> Is it good they didn't do the cath? Well, it's good they are paying attention to the proper details, like blood testing. If she needs the cath, she should have it, but they are being careful from the start and at least, that's a good sign.
     Will CHF kill her? Please read The Manual. There, the difference between CHF and cardiomyopathy is explained. Once a heart is weak enough to go into CHF, yes, it is usually weak enough to cause death at some point down the road. Will it be soon? I have no way to tell. I can say that, as The Manual explains, a person has a good chance of living a long time with CHF if they go about it right.
     I can't answer the questions you aren't asking, because I don't know what they are. <G> I'm pretty sure you'll find the answers as you read my pages, though. Go to the Site Index through the link at the top of this page and jump in. Please jog back here with all your specific questions, and we'll do our best to answer them. Jon.


Sheila P, January 13, 1999 - Hello everyone, My dad has now come to the conclusion that it will soon be time for him to quit working. One of the problems with this is that he will lose his life insurance. My mom and I don't hold out much hope for him getting life insurance coverage elsewhere, but I thought I would see if any of you have been in this situation. Any help is appreciated. spollock@tiarayachts.com


Al H's January 13 reply to Sheila P's January 13, 1999 - Hi Shelia, It would be difficult (I did not say impossible) to get new life insurance at a reasonable rate at this stage in his life. If he could afford the premiums, he would not need the insurance. One thought is that many term insurance programs with employers do offer a conversion policy for retirees when they leave, meaning he could keep the insurance he currently has but make payments directly to the insurance company. The price may still be too costly but it may be worth checking into. Al H. bobal@notnow.com


Denise Goodine, January 13, 1999 - Hi, My dad has CHF. He just got out of the hospital and is now in a nursing home. He is 86 and just diagnosed, his first time to a a doctor. He is very weak and can't even go to the bathroom. He is wearing diapers. Is there hope that he will be able to come home? They say he also had bacterial pneumonia. dgoodine@wwnet.net


Candy's January 14 reply to Lynne Young's January 13, 1999 - Hello Lynn, I know it seems like you will never get the answers to your questions. Don't worry, you will. My daughter says I frustrate her because I don't ask enough questions. This is all new to your mom too so maybe you could help your mom with a list of questions. The way my daughter resolved this was she'd give me a few questions she wanted to know about and I'd ask the doctor. Not only did this benefit her, it also helps me. My daughter also got frustrated waiting for test results. Yes, all of us who have CHF will probably die from it but it could be 10 or 20 years from now. Check out The Manual at this site. It will really help you learn about CHF. CMPotila@aol.com


Anita Silvey's January 14 reply to Sheila P's January 13, 1999 - Hi, My husband lost his life insurance when he quit work also. We purchased more insurance through Physician's Life but there is a 2 year waiting period before he gets full coverage. My father bought his from Penney's and they bill him on his charge card but he also had a waiting period of 2 years. There are probably other places you can get it with a waiting period. My husband was 48 when he bought it and it costs about $19 for $5,000 worth of coverage. I hope this helps you some. Anita S. dreamersil@aol.com


Paul B's January 14 reply to Denise Goodine's January 13, 1999 - Hi Denise, Not being able to get up to go to the bathroom is not uncommon for someone just done with a CHF visit to the hospital. That ability may return with some cardiac rehab. With your dad being 86, it's hard to tell. Read The Manual, talk to the doc, find out his ejection fraction, and what the prognosis is for his bacterial pneumonia. What meds is he on? Was he assigned to the nursing facility for rehab or as a "permanent" resident? Sometimes cardiac rehab is handled through a nursing home as a stop over between the hospital and home. wwhc@miworld.net


Donna Santaromita, January 14, 1999 - Hi, My name is Donna. My father is 57 years old, has CHF, and is currently in the hospital for the second time. He was diagosed about 2 years ago. For many years my mother and I have tried to get him to lose weight (he's over 300lbs) and stop smoking. He won't listen to any approach. I am dealing with his illness, which I only recently learned will probably get progessively worse and kill him, plus the inevitability that I will have to financially support them. My father has been self-employed for many years. He got fired from a city job because he often didn't feel like going, has no savings, no disability coverage, no IRA, and only enough life insurance to cover - I hate to say - funeral expenses. Whenever he can't work, he has no salary coming in. My mother only works part-time. Thankfully, he's under her medical insurance. I cannot afford to support them. I have spoken to them over the years about the possibility of financial disaster but they never took any action to get themselves financially stable. Dealing with the illness and the upcoming inevitability of supporting my parents is so much to deal with.
     I am 31, single, have always worked very hard to take care of myself, have no other immediate family and foresee myself working round the clock to support them, being involved in his illness and knowing he is going to get worse. I have tried to get my mother to get a full-time position or a second part-time position but she thinks there is nothing she can do, and shoots down all my suggestions. I'm going to have to do whatever is necessary to keep them from becoming homeless. Since I was a teenager, I have felt like the parent because of their irresponsibility. I could never make them understand that I am going to end up holding the bag. Anybody have any kind words? I can really use them. I am so exhausted from worrying. Thanks for giving me a place to vent.


Katherine J's January 14 reply to Donna S' January 14, 1999 - Hi Donna, I see some similarities between the degree of responsibility that you're taking on and my own situation. Have you looked into what social services are available to your parents? You are one person and can only do so much, and you need to worry about yourself, too, especially if they're not doing their part to take care of health and financial responsibilities. You must have help. Hang in there and remember that you can only do so much. If you run yourself ragged, you're not going to be a help to them. kathj@sfbay.net


Al H's January 14 reply to Donna S' January 14, 1999 - Hi Donna, Your parents sure raised a wonderful daughter. I am not sure that you should say you are going to support them. They have managed their life their way and you should accept it. You certainly appear to have lots of love but you should take care of yourself the best you can. Counseling over the years has helped you but they haven't taken the advice so far. Perhaps they have leaned on you too much and have put too many expectations on you and not on themselves. Usually "tough love" works in the opposite direction. :-) Al H. bobal@notnow.com


Barb's January 15 reply to Donna S' January 14, 1999 - Hi Donna, Your parents have no idea how lucky they are to have such a caring, compassionate daughter to dote over them! You seem like a perfect offspring that has been brought up well. Your parents' problems are their problems, however. I remember how I cringed every time my father ate the "wrong" thing or exposed himself to cigarette smoke after his first bypass surgery. No matter how much I expressed my displeasure with his choices, it boiled down to his desire to keep himself healthy. I could not control that aspect of his life. He now suffers from COPD, asthma, CHF, coronary and peripheral artery disease, to name a few. My mother has had 2 balloon angioplasties, has type II diabetes, and has been recently diagnosed with Parkinson's disease. I have turned blue in the face being the "parent" in their case when I see their diet, exercise routines, and lifestyles conflict with their general health! It is very frustrating to see them self-destruct but that apparently is their choice.
     As for the financial end of things, I cannot counsel you. I could only suggest that your parents part with some of their money for professional family counseling (with you included) to vent all the pent-up feelings and frustrations you all must be feeling. Good luck in your endeavor to help your parents. You are a wonderful person to care as much as you do. blembkedvm@hotmail.com


Candy's January 15 reply to Donna S' January 14, 1999 - Hi Donna, It sounds like you're between a rock and a hard place. It also sounds like there is a lot of guilt going on inside you. You know your parents have been taking care of themselves for your whole life. You are not responsible for your parents. There's a difference between taking responsibility and being supportive. Have you talked to the hospital social worker or contacted your community mental health agency? They are a good resource. Anyway, don't carry the burden alone. Do you have any siblings who can help? First, you have to take care of yourself before you can take care of anybody else. Has your father tried to apply for SSD? He still may be eligible for Social Security. There are people who haven't worked a day in their life who receive it. Please take care of yourself because it isn't going to do you or your parents any good if you feel resentment towards them. Sorry I seemed so straight forward but some problems are not nice. CMPotila@aol.com


Candice T, January 15, 1999 - Hi, I would like to know more information on CHD. My brother, Zane, 24 years old, is now in the hospital and things are getting confusing to me. I am 2000 mile away and well, my family doesn't want to worry me. They are putting him in a center. He is overweight and need to lose the weight but I am still very worried about him. I just lost my father and I do not want to lose my brother too. What questions do I need to ask to find out how he really is? Does CHD damage the heart? Will he always be sick? He also has a sleeping disorder. The doctors say that CHD caused it. He has a lot of problems but I just want to know how I can help him. Thank you for listening. Candi. thomas1@marinemwr.or.jp
 
Jon's Note: CHD?


Judy's January 15 reply to Katherine's January 14, 1999 - Hi, My father-in-law Leon, is also 81 and has had CHF for about 5 years. He has been in and out of the hospital during those years and had an ICD implanted and an angioplasty just last week. His doctors don't know how long he will live and because he has a strong desire to live, the doctors also don't give up. There have been times when we could have let him slip away. Every time a ventilator is required, they ask if we want it done. There have been 3 emergencies when this was necessary. There is no doubt that if he gave up, he would not last long. We have to carefully follow doctors' directions and stay in touch with several different specialists all the time - cardiologists, renal specialists, hematologists, gastroenterologists and more. The whole body becomes affected as this disease progresses. Leon has a good quality of life most of the time and we just deal with things as they occur and don't dwell on what next week will be like. We expect to have him some time yet. He has amazed his doctors who would not have guessed that he would have lived this long. So I can understand why they don't won't to give you that kind of prognosis. I can understand also why you would like to know. Wouldn't we all do things a little differently if we knew a loved one wouldn't be here very long? utvolfn@aol.com


Virginia R's January 15 reply to Donna S' January 14, 1999 - Hi, You are supporting your parents emotionally and I'm sure that you will help them out financially as well. There are services for people in your parents' situation. They can look into Medicaid, Supplemental Security Income, and other social services. You did not mention their living situation - whether they own a home or not. I would think this might be the first thing you would want to look into. As everyone else has said, don't wear yourself down in the process. Your parents made their choices and as painful as it may be for you, it is their decision. I wish you well. E-mail me anytime. giniroberts@hotmail.com


Robbie, January 15, 1999 - Hi, Today is Friday the 15th. Greg has developed an infection that is of grave concern. An ultrasound has shown there may be an issue with his gallbladder. However, more tests are needed to determine if the gallbladder is indeed the cause. They are also planning to do a CAT scan to see if Greg may have a sinus infection. Any infection at this time is of a very serious nature because should a heart become available, a transplant would not be possible. The rejection level would be extremely high due to the conflict in medications he is taking for the infection and because of the infection itself. They are working aggressively to locate the infection and hope to have it cleared up within a day or so. Greg is still very heavily sedated and on a respirator. Visitors and calls are not possible at this time. Some medications Greg is taking cause some amnesia andwith all he is going through, it is a good thing he will not be remember part or all of this time period. If you would like to write Greg, a kind of journal of the events he is missing, that would be great. I am certain he will want to hear everything that has happened while he has been away.
     Your prayers are very appreciated. This is a very trying time for us and I apologize for not contacting you sooner. Greg's mother passed away yesterday. Our needs are great but what Greg needs most (besides the heart, of course) is your continued prayers.
     PS. I just received a call from the doctor and it does appear to be his gallbladder. They are going in right now and inserting a tube into the gall bladder to remove infection. There are a number of risks involved. I am on my way to the hospital now. I'll let anyone know how it goes. styners@yahoo.com


Phyllis E, January 15, 1999 - Hi, I have a question on insurance. My husband is still working but thinking of going on long-term disability through his company. He has life insurance with this company worth 2½ times his yearly income. My question is, does he lose his insurance? His income will be greatly reduced with Disability. He is afraid to ask Human Resources because he doesn't want to negatively alert them. I know he can keep health insurance for 2 years before going on Medicare but generally, do people keep the same status with life insurance on long term disability? I know companies are different but thought I would ask if anyone has had a similiar situation. I need the peace of mind. Thanks. Phyllis E. PErnsberge@aol.com


Donna S' January 15 reply to Katherine J's January 14, 1999 - Hi, Thanks for the reply. I am just now learning how serious this is, so I haven't looked into any social services yet. That's the next step. The doctors still have not gone into detail. I thought it was just a condition that was treated and either went away or occurs from time to time. I had no idea it can progress or that it is life threatening. Thanks a lot to the doctors. They do not treat a patient, just what's wrong with them. I never heard of EF or Ace inhibitors before finding this site. Two days ago, the nurse said he's at 94, and left. I stopped her and asked "94 out of what?" Thank you Jon, for the info that I had not gotten from the docs.


Donna S' January 16 reply to Al H's January 14, 1999 - Hi, I'm glad you think well of me. The funny thing is, they don't lean on me at all. They are not addressing the situation and the future. They say "don't worry about it!" This is just the beginning of his condition. I am looking into a second job and am temping this Sunday. My mother asked why. She still doesn't get it. My father hasn't worked in 3 weeks! As far as tough love goes, if I make them see that I am working 2 jobs because they are not holding up their end, it may just jolt someone into action out of guilt. They are not the type of people to put their hand out, but they aren't doing anything for themselves either. I will not wait until the bomb drops like they are.


Jon's January 16 reply to Donna S' January 16, 1999 - Hi Donna, For what it's worth, I personally think trying to get anyone to do anything out of guilt is a very bad idea. Maybe reconsidering your reaction to their situation is as important as changing their reaction to it, at least for now. Jon.


Pat L's January 16 reply to Phyllis E's January 15, 1999 - Hi Phyllis, I saw your post and can only share my own experience. When I went out on Disability, the human resources director at my job said I would lose my life insurance. I contacted the insurance companies - there were 2. Both policies had disability riders, so I still have the insurance, at no cost to me. I had to submit the insurance company's forms to the doctor and have had to do so yearly but if I hadn't followed up on it myself, I would have lost it. I think many companies should have similar benefits. Good luck. It is a good idea to check company policy and procedure manuals too. I doublechecked everything, not taking the HR director's word for anything! Pat L. patlat@yahoo.com


Traci F, January 16, 1999 - Hi, This is my first time posting on your site. I have just found out that my dad has CHD. I would like to know more about CHD. My dad was first diagnosed with bacterial pneumonia. They have now said that it is CHD. He has trouble breathing when he is at rest and also when he exerts himself for a long period of time. He is overweight and was a heavy drinker until recently. If you have any thoughts or suggestions for me it would be greatly appreciated. Thanks. tracifitz@hotmail.com
 
Jon's Note: CHD?


Debbie, January 16, 1999 - Hi, My husband has dilated cardiomyopathy and CHF. He is only 40 years old. He was diagnosed in June. They said his ejection fraction was 13%. He had another echo in November. They said his ejection fraction was up to 30%. He works 12 to14 hours per day. He is always so tired. No one has ever told him that he can't work. Once he got the fluid off, he has been feeling pretty good, or so he says. I'm afraid that he doesn't feel as good as he pretends. The doctor is going to start him on Coreg in the next few weeks. No one has really told him how sick he is. I'm scared. He lost his father to the same disease when he was 42. Does anyone else have trouble getting their doctors to talk to them straight? We feel we can face things better if we know what we are facing.


Katherine J, January 16, 1999 - Hi, It's 1:00AM and I have just come home from the ER. Mom was transported by ambulance and 4 paramedics to the closest hospital, rather than her usual Kaiser, because she was gasping for breath and was totally in a panic. Her pulse was 136. It was pretty frightening. So they're admitting her. She's stabilized now so we came home because my son has to work in the morning. I just thought I'd write to people who know and care. Goodnight, K J. kathj@sfbay.net


Wendy, January 16, 1999 - Hi, I posted in December with a question about a Chemical Dependency Evaluation for heart transplant candidacy. I guess it is a mute point now, because my husband had his first appointment with the heart transplant doctor (after his initial hospitalization 2 months ago) and was told that he is far away from "The List." He was told he is medically managed and doing very well. His pulmonary output is only 25% lower than normal and the metabolic stress test gave him a number of 22, where normal is 25-35. The doc did not explain what these numbers are or mean. He has no artery blockage at all. He never mentioned or discussed his EF of 10%. He has no swelling, fluid in the lungs, or veins sticking out of his neck.
     He told me to check his neck veins but never explained why or what this means, or what to do if it happens. He dismissed all our questions rather flippantly, never asked how he takes care of himself - diet, fluid restriction, etc. He gave us the impression that my husband is fine and he can basically resume life as normal. He did not respond when my husband asked why he felt so bad all the time, other than to say, "Your tests show you have no serious problems." He gave us no cautions about things to avoid. When asked about sharp pains down the arm and tingling fingers, he said "everyone has little aches and pains, don't worry about it." When asked about memory loss, inability to concentrate, focus, and recall things quickly (which my husband needs for his computer job and our income), or to work even 20 hours a week, he told him that CHF has nothing to do with any of that. He said that if it existed, it was due to depression or worrying too much, not CHF (we did not think he was depressed). He said he would get over it soon and it will improve when he gets used to the idea of all this. We felt foolish for asking questions, for even taking up his time! We were very intimidated. The doc was not aware he had non-sustained VT until I mentioned it and he flipped through his chart. He said the short VT episodes don't bother him, to which my husband replied, "But they bother us, I feel like I'm going to pass out!" When I asked about exercise and driving, the doc said fine.
     He told us we could go to our local cardiologist for med management and other problems and to come back to him in a year. Oh, yes, and to check potassium levels about once a month for a while. Bye! The local cardiologist had told us previously that with an EF of 10% and the VT problem, he should not be working, driving, exercising much, and should be a shoo-in for SSD (we were going to file but now, who knows?). That doc also said he should become a transplant candidate soon. So, who do we believe and where do we go now? Basically, now it looks like my husband is faking his inability to think, work, and the tiredness and symptoms, and he should just "knock it off" and get back to normalcy! In other words, that it is "all in his head." He has started therapy for this already, as he has been in a state of emotional shock since being told he is psycho about this. The confusion of CHF interpretation is such a threat to your well being, who needs the heart problems to do it?! We don't know whether be glad or sad about the latest diagnosis and prognosis! Help! wjh@ptcom.net


Jon's January 16 reply to Wendy's January 16, 1999 - Hi Wendy, Get a new CHF cardiologist. Now. This one is treating a chart, not your husband. That is dangerous. He will overlook things and make mistakes, therefore placing your husband in danger, so hoof it to another CHF doc fast. Neck veins can be used as an indicator of capillary wedge pressure by an experienced doctor, but not by just anybody - and I'm sure this guy didn't explain capillary wedge pressure, either. I would push getting an appointment to a real CHF doc - this guy isn't - in a week or less. If he intimidates you, see another one yet. The choice of CHF doc is critical, and you need to get the right one. Jon.


Katherine J's January 16 reply to Judy's January 15, 1999 - Hi Judy, Thanks for your reply. Actually, the main reason why I wish that we could have some idea of Mom's life expectancy is not so we would know how to treat her because of knowledge of limited life expectancy, but rather so we could enlist the additional support of hospice at the appropriate time. I know they were a marvelous help and comfort to my Dad when he was dying (as well as for us) and I would like her to have that kind of comfort for herself. It sounds like your dad and my mom both have a strong will to live, which is truly an amazing thing to see. Most of the time, my mom has an ok quality of life too. kathj@sfbay.net


Al H's January 16 reply to Donna S' January 16, 1999 - Hi Donna, Now I see some more of the picture but it certainly is still fuzzy. Do you know all your parents' financial business? Perhaps they are comfortable the way they are. Perhaps you worry too much about them. Since they don't lean on you (from what you said), maybe as Jon says, you may need to look at yourself. All this worry could cause you to end up with health problems. Focus on your father's health for the present. This may help him get back to work soon. Then maybe they can catch up financially. You mentioned the nurse said he's 94. That could have been his heart rate, possibly. Hang in there, Donna. You have come to the right place for comfort support. This is why there is a forum for those with CHF and a forum for the loved ones with CHF. I am with CHF, but there are plenty here who may be going through the same thing with their spouse, child, sibling or parent(s). Al H. bobal@notnow.com


Sharon's January 16 reply to Phyllis E's January 15, 1999 - Hi, My 34 year old husband went on long term disability this past September. The company he worked for would have continued his life insurance at the basic rate even though he was on disability. We had been paying for a higher percentage and wanted to keep it at the higher rate, so we now pay something like $5 a month to keep it at the higher level. We called HR for the specifics. Good luck! still_tickin@msn.com


Rachel's January 17 reply to Debbie's January 16, 1999 - Hi, We had the same problem - at first. I knew the results of the echo from the internist before I ever had an official diagnosis for my hubby. I took the results and had him narrowed down to about 3 different conditions. The one I didn't want was dilated cardiomyopathy. That is what we were told. The doctor didn't mention the seriousness of this or the grim stats to us that day. I made excuses for my dreary mood the rest of the day. I was trying to keep up a good face when I needed to scream. The next day, I got out and went to a pay phone at McDonald's. I told the office nurse that I needed to speak to the doctor right then, because I thought I knew more about Shawn's condition than he had told. He came to the phone right away and apologized for not telling everything but he explained that he wanted us to have a chance for "heart condition" to soak in before really dropping the bomb on us. He also said he wanted to see how Shawn responded to the drugs. He said it would be easier for Shawn to deal with it if he at least had seen a little progress. He was totally forthright with me over the phone.
     I told Shawn how sick he was, and he told me he knew he had been close to dying but didn't want to scare me! He wasn't shocked in the slightest; these macho men. Anyway, since that time, the cardiologist has been very open. Shawn works 10-12 hour days too and so far, has not really had to slow down. The Coreg did wonders - we think. He has an absolutely huge chest and it is hard to get an accurate EF on him. He has never lost his power lifting size. The cardiologist isn't sure whether or not they can even get a good film through a cath, so they haven't done one. Shawn was reluctant and the doctor doesn't feel strongly about it yet. Does anyone have any comments on the cath situation? Good luck, Debbie! sfields@iquest.net


Jon's January 17 reply to Rachel's January 17, 1999 - Hi Rachel, That's the first time I've heard that. I know some huge guys who have had successful diagnostics done. A cath is done from inside an artery, so I'm not sure why there would be a problem. The catheter's probe actually goes right up to the heart, internally. I am interested in reasons though, so let me know if the doc goes into detail. Also, for what it's worth, I didn't slow down after I got sick - because I hadn't been properly diagnosed - and almost worked myself to death in the long run. Al did the same, but after he got diagnosed, if I'm not mistaken. Just be careful, is all. Jon.


Katherine J, January 17, 1999 - Hi, I just wanted to update you. Mom's still in the hospital they first transported her to, because they don't want to move her. We are appreciating that the degree of care is a little bit better. Kaiser had decreased her Lasix because of kidney damage but this hospital has increased her Lasix dosage plus giving it more frequently. Her breathing is much improved. The best thing though, is that she and I have discussed together openly the eventuality of her death and what she wants done, and somehow, opening up the channel of communication has eased her fear and made it easier for me. I think this is the main thing I wanted to accomplish through hospice and I am very grateful to have it accomplished. Thanks for listening. kathj@sfbay.net


Robbie, January 18, 1999 - My love, my best friend, my mentor, my hero, my dear sweet husband Greg, left this world to return to his Father above on Saturday, January 16th at 4:20PM. On Thursday, he developed a fever that started small and grew higher each hour. By Friday night, he had a temperature of 106+ and they could not bring it down. It was found that he had a large pool of blood in the front of his brain. The left side was badly infected and it was pushing against his brain stem. There was no hope. I sadly followed my lover's request that he not be put through any more pain should something like this occur.
     Never have I felt so much pain. Never have I lost so much. No greater man has come into my mortal life. I am lost. I will miss him so. He taught me what family and loyalty and respect and love were all about. I was not deserving of his love. Please forgive me Greg, I should have tried harder. You tried so hard to give me so much of your heart but it grew too weak to sustain your own needs and now you are gone. The emptiness in my heart is too much to bear. Until we meet again, my love, goodbye. Your devoted wife, Robbie. styners@yahoo.com


Joseph, January 18, 1999 - Hello, My mom has CHF. Her name is Gwen and she is a frequent visitor of the forum. I am interested in meeting others who are so scared for their loved ones as I am. It is horrifying, me only being 13. One night I stayed up well into the night, scared of what life would be like without my mom. Please reply, for I am going to become a frequent visitor. Joefoe2000@aol.com


Jon's January 18 reply to Joseph's January 18, 1999 - Hi Joseph, Welcome to Jon's Place. My daughter is a teen and has been dealing with my illness since she was 12. As for me, my door is always open. Remember that you have no need to "be brave" for your mom's sake and you do need to openly discuss your fears and feelings with her. She wants to help you cope with her illness as much as she wants to learn to cope with it herself. I look forward to seeing you around here! Jon.


Ruthie A's January 19 reply to Joseph's January 18, 1999 - Hi Joseph. I have CHF too, and my son just turned 18. He was only 14 or 15 when I found I had cancer and he had to face the possibility that I would die. That turned out ok, only to have me get CHF a year ago. It was hard for my son too, especially when I would need to go to bed and rest a lot. He was not only scared but lonely. It is late at night right now, so I can't ask him but I am sure that he would be glad to answer any questions you have. He also has a friend (another teen) who just found out she has CHF, so he is pretty experienced in talking about it, just as Jon's daughter is. My son's name is Jeff and his e-mail address is nectaar@juno.com. Welcome to the forum, Joseph. You came to the right place. Ask anything you want. We are here to help. Ruthie A. rlaba@mindspring.com


Debbie's January 19 reply to Rachel's January 17, 1999 - Dear Rachel, Thank you for answering me. I have been reading this since my husband was diagnosed. I was glad to hear that your doctor was not up front with you either. My husband is also a big man with a big chest. They did the catheterization on him and he did fine. That is when they diagnosed the cardiomyopathy. No one has ever told him to cut down on his fluids or lose weight, although he has tried to do so himself. I watched my 26 year old sister die of cancer a year ago. She left 7 children under the age of 9. I read somewhere that this is like cancer of the heart. I can't go through that again. LLewis4177@aol.com


Lynne Young's January 19 reply to Jon's January 18, 1999 - Thanks Jon, I have not only read The Manual but also printed it for others in my family to read. Although a lot of it saddens me, at least I have a few answers. Now my brother also understands how serious this can be. My mother's friend also has CHF but she never swelled and was in the hospital for a week, was released, and never told it would be with her forever. She seems so much better than my mom. I am sure there are extents of this condition but should it be wee and huge? Also, can someone have this long before it is detected? This is so strange to me but my mothers doctor did not even diagnose CHF until I had told my mom over the phone that her symptoms sounded like CHF. I learned this from a telephone service regarding health. When my mother asked her, she said yes and finally sent her to her heart doctor. This is absurd to me! lyoung6780@aol.com


Sally R's January 19 reply to Katherine J's January 18, 1999 - Hi Katherine, I'm so glad that your mother is getting adequate care and that you and she have been able to talk openly about her condition. It is a comfort to your mother to be able to express her feelings. Please keep us informed about her condition and know that our thoughts and prayers are with you both. Sally R. therays@gte.net


Sally R's January 19 reply to Robbie's January 18, 1999 - Dear Robbie, Please accept my deepest sympathy on the loss of your husband, Greg. Please remember that he chose you as his soulmate and that he will be with you in spirit forever. Sally R. therays@gte.net


Rachel's January 19 reply to Jon's January 18, 1999 - Hi, The doc didn't go into a lot of explanation about why he would not get clear pics of Shawn's chest through a cath but he did say something about the correct angles for the pictures being hard to obtain with his chest size. He said there are normally 12 pictures he likes to get while doing a cath and he can safely assume he can clearly get about 4 pics. While that would provide part of the info he needs, he isn't sure it is enough to make it that important, especially with Shawn's aversion to the entire procedure. He said some cases are cut and dried that you need to do a cath and Shawn isn't really one of them. Shawn isn't afraid of dying - it is the stroke factor that scares him. Does this clear things up any or only make them muddier? Thanks! sfields@iquest.net


Candy's January 19 reply to Joseph's January 18, 1999 - Hi Joseph, Welcome. I just wanted to add that please feel free to ask any questions. We'll be glad to answer them. Your mother is a very lucky person to have a son like you. CMPotila@aol.com


Lisa, January 19, 1999 - Hi, My husband was admitted to the hospital several days before Christmas. He couldn't breathe, could barely walk without such complete exhaustion he would need to lean in a door frame or on a counter or a table, and then his ankles and legs swelled up. We had gone to a walk-in clinic exactly one week earlier and they sent him home with a diagnosis of bronchitis and prescription for a decongestant. At the hospital, a chest x-ray showed an enlarged heart. He had an echo, which revealed no valve problems, an enlarged left side of the heart and an EF of 25. They drained him of fluid and stabilized him. He responded very well to the medications. The cardiologist at the hospital decided to let him come home for Christmas and come back after the holiday for a cath. The cath showed no coronary artery disease.
     My husband is 44 years old, doesn't drink or smoke and has a very physical job. At first, the cardiologist wouldn't let him go back to work because he lifts 80-100lbs on the job regularly. He told me he could do quite well for some time but would expect at some point for his symptoms to worsen. He asked if we had Disability and mentioned heart transplant down the road. I told him we do not have Disability. We are self employed. It's even worse than that - we have no medical insurance and I have been at home our whole 22 year marriage raising our 4 children. The doctor scheduled him for a regular stress test at his office. I guess he did very well on the test. He was able to stay on the treadmill for 10 minutes because as soon as it was over, the doc announced he could go back to work with "no restrictions" and increased his Accupril. My husband is on cloud nine, and I am worried. Don't get me wrong, I'm relieved he is feeling so well but from "do you have Disability?" to "no restrictions" seems so far apart. All this occurred in less than a month and my head is spinning. I found your site the first day my husband went into the hospital.You have provided such a wonderful service. I would not know half of what I learned on your site about my husband's illness if it were not for this wonderful site. Thank you so much.
     A short while ago, there were some posts concerning cold weather for people with CHF. The gist was don't go out in really cold weather if you don't have to and if you do, bundle up well, take a cell phone in the car, etc. Well, in addition to lifting on the job, my husband is out in the elements all day, except when driving to the next job. He is in cable construction. Any thoughts about his work, now that he has cardiomyopathy? Am I just being a worry wart? My concern is that he could "work" himself to another level of this disease sooner than would otherwise happen. Thanks for any input and for this wonderful forum. SndyNeck@aol.com


Tom S' January 19 reply to Joseph's January 18, 1999 - Hi Joseph, As a CHFer and father of 8 children, 2 of which are near your age at 11 and 16, I can understand your fears. I often see the looks on my children's faces and they often express the fears you have. Open communication is the most important thing you can have with your mother at this time. The key to the whole situation is that you need to concentrate on the business of "living," not the thoughts and fears of dying. Live life with your mother to its fullest and fully appreciate and enjoy the time you have. I had a "terminally ill" mother who lived well into her 90s, even though I was told as a teenager that she didn't have "much longer to live." She fooled everybody. Even if she hadn't lived such a long life, at least it would have been far easier to have lived with her, watching her live, instead of waiting for her to die. tomkent@bellsouth.net


Dawn's January 19 reply to Jon's January 18, 1999 - Hi Jon, When I worked in medical transcription years ago, CHD was often used for "Congestive Heart Disease." Whether or not they still continue using it, I'm not sure. Robbie, you are in my thoughts and prayers. Dawn. phoenix@mt-vernon.com
 
Jon's Note: Thanks!


Donna, January 19, 1999 - Hi all, Debbie and Rachel, My dad also has dilated cardiomyopathy and CHF at 57 years old. He was released from the hospital today and I still have not been able to find out anything from the doctors. My mom and I cannot seem to track them down. I do not know his EF and no one told him how serious this is. Around 2 years ago, when he was first diagnosed, he was only given medications for the first couple of weeks after he left the hospital. I am wondering why he wasn't kept on them and now he is recovering from another bout with CHF. I am going to try and find a doctor that specializes in this. Anyone have any resources to find a good doctor?


Donna's January 19 reply to Robbie's January 18, 1999 - Hi Robbie, My deepest sympathy for your loss. You can write to me whenever you need an outlet for your sorrow. I truly hope you will eventually find strenth and happiness for yourself after you have had time to mourn. My thoughts are with you.


Katherine J, January 19, 1999 - Hi, My mom came home today. It's hard to believe that Friday night, the paramedics were cutting her night gown off and trying to start a line while she was gasping for breath. Today she looks better than she has looked in 6 weeks. Is it normal for such radical changes in such a short period? Still,I can see that she deteriorates a little bit more with each episode. My son has been down at Kaiser trying to get the medications prescribed by the physician from the hospital that she was transported to. Kaiser doesn't want to pay for the drugs,which makes me wonder how often she is given inferior treatment to cut costs by Kaiser? Well,thanks for listening. Katherine. kathj@sfbay.net


Jon, January 22, 1999 - Hi all, I have to move this page again. Earthlink doesn't want the traffic without a hefty profit. So it goes. I'll make this Url a re-direct so you don't get lost. Jon.


Tandy K, January 22, 1999 - Hello, I have a soon to be one year old who has CHF and dilated cardiomyopathy. He was diagnosed at 2 months. They believe it was viral myocarditis but the cath was inconclusive. I just need to hear from others who deal with this (especially someone who can talk). His EF was 36% in December and fractional shortening was 13. At diagnosis in 3/98, his EF was less than 15 and FS was 0. He has been in the same range since late April or early May. He takes Captopril, Lasix, and Digoxin. He is now keeping up developmentally, although he was not at first, and is on the growth chart at less than 5%. I just keep thinking someone will tell me they know someone who lived 70 years with this and lived a happy life. Thanks Rachel for posting this address on the other site. Jon, I got more info today than the last 10 months. Thanks, Tandy K. kephart@crosswind.net


Rachel's January 22 reply to Donna's January 19, 1999 - Hi, The best thing that you can do to get "respect" from the people that are caring for your husband is to gain knowledge. It is easy for the doctors and nurses to fluff over things if the patients and loved ones don't know what to ask or are afraid to ask. Don't be afraid to be vocal. If your dad isn't comfortable about you doing that around him, do it in private. When I made it known that I knew what was going on, and I wanted all of the info I could get - a door opened. The doctor speaks freely now. All docs are different but when you present your knowledge they treat you differently. Read The Manual and test info. I wish I had found this site a year ago because it would have saved a lot of time. Jon has done a phenomenal thing here. Write down your questions and concerns as well.
     As for finding a good cardiologist, I was lucky. One of my 3rd grade students has a cardiologist for a dad. He referred me to whom he would send his family. Look for a bigger hospital that is up on the latest stuff. My particular cardiology group has a heart failure clinic with staff dedicated only to that. Good luck! sfields@iquest.net


Joseph, January 22, 1999 - Hi, Thank you for the great care and love you have shown me. I am very happy I found a place like this. I just read a book called "Phoenix rising" and I have to say you should all read it. It really let me realize the importance of living life to the fullest. If you have any more comments or questions, you know where to reach me. Your pal! Joe. Joefoe2000@aol.com


Julia Ford, January 22, 1999 - Hi, My uncle was diagnosed with Congestive Heart Failure 2 months ago. His mitral and atrial heart valves are leaking. He is quite progressed and the doctors have already suggested surgery. My uncle has denied it at this time. He has asked me to find him an alternative to surgery, although at his progressed stage, I doubt there are alternatives. He wants to participate in research to help gain something positive from his unfortunate condition. He does not have access to a computer and such, therefore I am searching for him. If anyone has information on contacts or suggestions on where to look for such research opportunities, please respond. Thank you. jford@rohan.sdsu.edu


Jon, January 22, 1999 - Hi, Posts are way behind for several reasons, mainly because I am just starting to recover from the latest round of meds for an infection. Be patient. :-) Jon.


Dawn, January 23, 1999 - Hi, I am writing to let you know that this page has been a great help, with a lot of great information. My father-in law, who is 78, has had CHF for several years now, but things just seem to be getting a lot worse all of a sudden. He has been in the hospital 4 times in the last 8 months for CHF and several other things. Every time we learn more but it seems that the doctors just don't have a lot of time for explaining all the details of CHF. I have quite the list of questions for the doctors this time, thanks to all the info I have gotten from this page. If there is any more info that I can get on CHF, I would like to know about it. Thanks again for the help. rd5@uswest.net


Deb J, January 23, 1999 - Hi everyone, It has been a long time since I've posted here. I used to read the posts daily but it somehow got away from me about 6 months ago. Anyway, I wanted to share some great news and info with you. My husband received a heart transplant on 12/16/98. He came home from the hospital on Christmas Eve, only 8 days later! I just wanted to share that it was worth every painstaking minute of the wait. To anyone who is contemplating it, I know it's scary but the transformation that has occured in my household is incredible. If anyone would like any personal info on the whole situation, please feel free to e-mail me. It would be a pleasure. I'd also like to congratulate Paul on his "Gift of Life." Finally, my husband also was on dobutamine for a 5 day stretch back in September and after the second day he felt like a new man. It definitely helped to get him through the final stretch of the wait. My prayers are with you all. Deb J. Maillay@aol.com


Katherine J, January 23, 1999 - Hi, We made a huge concession to this disease that has invaded our household. We got a hospital bed and big potty chairs in each room that Mom spends time in (at the recommendation of her visiting nurse, for those times when she doesn't have the breath to make it to the loo). We've draped pretty shawls on them and put gingham sheets and a pretty quilt on the hospital bed but there they are - giving validation to the presence of the disease. I shed tears over the loss of being able to go to the theater with mom or walks by the ocean at Half Moon Bay. The biggest "adventure" she can manage will be, possibly, the occasional doctor's visit, which takes everything she has to accomplish. Good thoughts to all and thanks for listening, Katherine. kathj@sfbay.net


Traci F, January 23, 1999 - Hi, I first posted last week. I kind of made a typo throughout my note. My dad was diagnosed with CHF last Friday. Since then, we have been through a lot. On Tuesday, he had quadruple bypass surgery. He has moderate to severe damage to his heart muscle. His EF is 30%. I would like to know what EF means. His LVEDP is 34% and would like to know what this means. I would like to know more about CHF. I would also like to know the dangers of being in atrial fibrillation when the person has CHF. tracifitz@hotmail.com


Jon's January 23 reply to Traci F's January 23, 1999 - Hi Traci, EF is defined here. CHF info and then some can be found at The Manual. More is available through the Site Index at the top of this page. A-fib is mainly a risk factor for stroke. Since the heart beat is erratic with a-fib, not all the blood gets moved on each beat, and some can pool in the bottom of the heart chamber. This blood can sit a bit too long and start to clot, then get pumped out and cause a stroke. Blood thinners can help, as can ablation. For this type problem, people usually see an electrophysiologist - a cardiologist specializing in the heart's electrical system. I honestly don't know what an LVEDP is, although it starts with LV, which means "left ventricle." Jon.


Claudia, January 23, 1999 - Hello, I'm brand new here. I just happened across this site while surfing. My dear father in law, who's 93 and lives with us, has CHF. He's on Vasotec and Lasix, plus potassium and something for his stomach, too. He's actually doing quite well, but is constantly complaining of shortness of breath, which I know just goes with the territory. He has a wonderful doctor who cares about him as a person but he's feeling pretty discouraged because he feels he has one foot in the grave and another on a banana peel. He's having a hard time understanding that at his age, there are no miracles. His mind is clear and he's interested in life. He does his own cooking. I do his laundry and take him out a time or two a week for errands.
     I feel that the main thing I can do to help him is to help him deal with the hard questions, like his fear of dying (he's a Christian), why he can't have a heart transplant, etc. I love him dearly and I'm the only one who's talking to him about these things. His daughter (who lives about 800 miles away) doesn't seem to be able to and neither does my husband. That's mostly about Dad. As for me, I know the time is coming when he won't be here anymore and I struggle with this whole process of saying goodbye. He's had a full, wonderful life, and I just am having hard time thinking about him not being here - also being available to him while he is. Thanks for letting me sound off. Claudia. HawaiianGirl@compuserve.com


Lisa, January 23, 1999 - Hi, I am the mother of a 3 year old son, Brendan, who has been diagnosed with hypertrophic cardiomyopathy with a "slight obstruction," aortic and pulmunary stenosis, and William Syndrome (which is a form of mental retardation like Down's Syndrome). He doesn't talk yet so it is very difficult to know what is going on with this kid. He is currently on verapamil which seems to be controlling things but I just really feel like I have no idea what is going on with him. If he runs from one end of my house to the other, he is wheezing and seems very exhausted. This does not seem normal to me and after reading your forum on doctors (specifically when you mentioned the part about not finding out enough from the cardiologist), I feel I have not been properly informed. I have just recently gotten a computer and have been trying online to find some case studies to know what our road ahead is. I have read so much information it has scared me.
     I was told that this was a freak of nature to have 2 defects, one on top of another (the cardiomyopathy and Williams syndrome) but recently I read that a virus could cause cardiomyopathy. Is this true? Am I reading the wrong information? Brendan contracted RSV when he was 2 months old and that is when they discovered the heart problem. He was premature and required special attention and some oxygen at birth, which makes me think they should have noticed a murmur at birth instead of 2 months later. I am really confused and really need some info or help in trying to piece this together. It just doesn't make sense. Absolutely no one in my family has had any heart problem other than because of old age or smoking and drinking - stuff like that. Any help would be appreciated. Thank you. Feel free to send me anything that would help. Thank you so much for your site. lisaoneway@aol.com


Jon's January 23 reply to Lisa's January 23, 1999 - Hi Lisa, Doctors are notorious for not telling us what we should know. First, major medical centers might be interested in your son because he is unusual. Teaching hospitals often reduce costs to the family/patient drastically in order to treat such cases because it furthers their reputation and provides "case material." Write the heart forum at The Cleveland Clinic at this Url: http://www.medhelp.org/perl6/cardio/wwwboard.html. Their cardiologists answer questions there. It may take a day or two to get answers but take your time writing your post there and lay out specific questions for them and they may be able to really help.
     Next, learn about HCM, also called IHSS. You can learn about the acronyms and medical terms at the Medspeak page at my site. Then go to the Hypertrophic Cardiomyopathy Association page here.
     Yes, viruses can cause cardiomyopaythy, but I am not aware that they cause HCM. I have not researched HCM as deeply as DCM, so I could be wrong. I hope others with children having HCM will contact you. They do pass through, but I don't have a list of who they are. Don't be a stranger, and ask us all the questions you have. Jon.


Deb J's January 23 reply to Tandy K's January 22, 1999 - Hi Tandy, No one can really tell you how long and how happy a person can live with CHF but there is hope. New drugs are being discovered all the time, surgical treatments are being advanced and as a last resort, transplant is an option. I know that probably scares you at this point. It scared me when they started talking about my husband needing a transplant and if it was my son that needed it, it would have been 10 times worse. My husband had the transplant almost 6 weeks ago and he is doing great. It was definitely worth it. He is only 33 and now he feels young again. Statistics say he could live anywhere 25 years with his new heart. I have heard that children do even better. In the meantime, technology is advancing so quickly that who knows what they will be able to do in 5-10 years. Keep your faith and always hope for the best. Sincerely, Deb J. Maillay@aol.com


Jon's January 23 reply to Tandy K's January 22, 1999 - Hi Tandy, It's a great sign that his EF has gone up so far, as is his improved development! I admit to being short on knowledge about pediatric cardiomyopathy but he sounds like he's doing quite well. Have you searched the WWW for "pediatric cardiomyopathy?" That brings up some hospitals and clinic listings in various parts of the United States which have departments specializing in children with cardiomyopathy. I know that Johns Hopkins has such a department. Drop by the Cleveland Clinic's heart forum as well. They are the leading cardiovascular hospital in the USA/world right now. The Url is in my post to Lisa just above. Hang in there. Jon.


Traci F, January 23, 1999 - Hi, On Friday morning, my father had a stroke that affected the middle of the left side of the brain. We are still unsure as to the extent of damage or what the prognosis is going to be. Can you tell me what the chances of the stroke making the CHF worse? Thanks. tracifitz@hotmail.com


Patricia G, January 24, 1999 - Hi, I have a booklet to suggest that is good reading on CoQ10 for heart disease. It is "Coenzyme Q10 and the Heart," authored by Stephen T. Sinatra. It is a Keats Good Health Guide and costs around $4. I believe CoQ10 is the reason my my DCM has resolved. In the booklet, it says that a person with this disease should be taking COQ10 in the amount of 360mg per day. Patrigil@aol.com


Wendy, January 24, 1999 - Hi, First, I would like to give my condolences to Robbie, may God be with her. We have received a lot of support and recommendations from posting to this site which have greatly helped our "quest for life." Thank you. We are in the process of evaluating the last heart failure team/doc visit and the information we received. After a week of severe depression for my husband (after hearing his memory loss and poor thinking symptoms were all in his head), we have come out on the other side and we have "a plan."
     My next question is this - It seems that starting the SSD process (filing) is a gamble. We do not know how my husband is going to feel in the future. Whether he will continue to improve, remain the same, or go downhill. Right now he is working but it can be a struggle. Some days he is fine, other days he can't do much. It is very irregular. I have noticed that when he is depressed, he does not do well at all, yet depression seems to be a part of CHF, even if it is all in your head. What if he gets a little better and is able to work more regular? His normal income is much better than SSD! We have a phone interview next week for the filing of SSD. Is this too early in the game (CHF diagnosis since 11/98, EF 10 - 15%, doing "well" on Coreg), or should we keep this appointment? How do you know when is the right time? How long does SSD take? We are at a real quandary here and not having a crystal ball makes this, at best, a gamble. Any thoughts on this? We don't want to shoot ourselves in the foot here but everything we read says file early and keep working if you can, it might take years. Is that the right thing to do? We have 5 kids (14, 15, 16, 18, 20), college costs, etc,..., and my husband's career was just starting the upward swing. Once again, thanks for everything! wjh@ptcom.net


Nancy, January 24, 1999 - Hi, This is my first post, so forgive me if I sound awkward. My father was diagnosed with CHF last month. I just want to say that this site has been a wonderful source of info for me and my family. None of us really had any idea of what CHF was until I happened upon this site. We're still new at this CHF stuff, but thanks to this site, we're learning more every day. Reading the posts has helped a great deal, too. I'm extremely scared and worried for my dad, and I know that he's scared, too. Knowing that we are not alone in dealing with CHF is comforting to a certain degree. Thanks for listening. dmiller949@aol.com


Bill D's January 24 reply to Julia Ford's January 23, 1999 - Hi Julia, There have been a lot of studies about the treatment of coronary artery disease and there seems to be adequate proof that most invasive techniques are worse for patients than plain medication. Angiograms, angioplastys and bypass are now a billion dollar business. Cardiologists and cardiovascular surgeons aren't paying the studies much attention. It's another thing though, when it comes to leaky valves. I've seen no studies on ways to fix them with medication. I have a good friend who had one put in almost 12 years ago. He was convinced he wasn't going to make it and persuaded his wife to mortgage their paid up house to buy a BMW 325i. That car is now 12 years old and in not as good a shape as my friend Ned. Replacing his leaky valve made him feel better than he had in many years. His CHF symptoms cleared right up! Bill. billdog@gate.net


Cheryl, January 24, 1999 - Hi, My name is Cheryl and my mother has CHF. She has been in the hospital every month for the last 5 months with CHF. Every time she goes in and they Lasix her up, she vomits her food for the next 2 or 3 weeks. Right now she is malnutritioned from it and is having more frequent attacks. Has anyone ever heard of this degree of nausea, or do you know of another diuretic that might work as well without the side effects? I have mentioned this to her doctor without much luck. Any comments would be helpful. Thanks again. Also, she is one of those people that is really fragile and goes from CHF to dehydrated in no time.


Jon's January 24 reply to Cheryl's January 24, 1999 - Hi Cheryl, I have no experience with this problem, but Demadex and Bumex are both possibilities for replacing Lasix. Jon.


Jon's January 24 reply to Tracy F's January 23, 1999 - Hi Traci, I'm sorry about your dad. I don't have any specifics for you regarding complications between stroke and CHF. Meds conflicts are something to watch out for. Sorry I can't help. Jon.


Candy's January 25 reply to Wendy's January 24, 1999 - Hello, It's hard to say when is the best time to apply for SSD. However, it would probably be best to keep the telephone interview. You have some time after that to get the application back. A good idea would be to click on Jon's Site Index at the top of this page. It was helpful to me. He has info on SSD. I was diagnosed with CHF and DCM in August of 1998. I felt pretty good after the doctors had stabilized my condition and started medication. I even went back to work. Pretty soon though, I started to become really fatigued and was experiencing shortness of breath. I generally wasn't feeling well. I was having some side effects to the meds. I was forgetful and couldn't concentrate or focus. My EF was 25 at that time. Depression does often times accompany CHF. The truth is we have things to be depressed about. Our quality of life has changed significantly. I imagine your husband is probably worried about how he is going to provide for his family. My advice would be to go forward with applying for SSD. Get a lawyer who handles SSD issues. Also, talk to your doctors about your husband's ability to work. I'm going through the SSD process right now. Good luck to you and I hope things turn out well for you. CMPotila@aol.com


Dawn B's January 25 reply to Wendy's January 24, 1999 - Hi, First off, I'd like to say thanks to all the kind folks who responded to my request for ICD experiences. Knowing that others go through it and how they feel really helped Gary deal with this a little better. Wendy, It's not all in your husband's head! We too are dealing with impaired memory and cognitive abilities. Depression can make them worse. I now know that Gary's were a result of oxygen deprivation due to having "died" and insufficient O2 during CPR. They are something we just have to live with but considering the other option, they're not too bad. <G> SSD is also in the forefront of things we have to deal with. We have applied but have not yet heard anything. Then we find out that Gary will be considered terminated from his job on 5/31/99. At that point, Long Term Disability (LTD for short) is supposed to kick in (hopefully!). His company provides the LTD. We have to apply for it just like SSD. We are quite worried about all this because just to look at Gary, one cannot tell that he is ill. There is no way he can return to his previous job. He was a locomotive and railroad mechanic in a power generating plant. Just pushing a small utility trailer set off his ICD. Plus, every time we talk with the doctor about a return to work, his answer is that he is not ready to discuss that at this time, which I can understand. So one of the first things we are going to do is get an SSD lawyer. This was recommended to us by Gary's company. Just take it one step at a time. Sorry to ramble on. Blessings all. Dawn. phoenix@mt-vernon.com


Al H's January 25 reply to Cheryl's January 24, 1999 - Hi Cheryl, Is your Mom having atrial fibs while she is in the hospital? This causes nausea. Over the years I have taken lasix and demadex, and the only real problem with nausea has been the a-fibs. Just a thought. Al H. bobal@notnow.com


Linda ?, January 25, 1999 - Hi, I'm the mother of a 20 year old son who is about to be put as a status 1 candidate for a heart transplant. We are going to St. Lukes in Houston, but I don't know if that is where we should go. I don't feel very positive about all this! I know the pediatrics transplant program was shut down for awhile. Also, I'm not sure if he is ready to live a totally restricted lifestyle. I just don't know how to feel! Any info or words of advice? mbanks9999@aol.com


Deb J's January 26 reply to Linda ?'s January 25, 1999 - Hi Linda, I have some experience with transplants and want to reassure you that the transplant does not restrict your lifestyle as much as the disease your son is suffering from does. Sure, you are handing in one set of problems for another but many recipients "feel good" and that can make all the difference in the world. My husband had a transplant 6 weeks ago today and he is going back to work within the next week. Like your son, he is young and can snap back into a rewarding lifestyle rather quickly. What is it that makes you feel so negative about this, the hospital or the transplant itself? Is your son part of the pediatric program or an adult program? From what I've heard, Texas has the shortest wait for transplants but if you are very uncomfortable with the hospital, it might be a good idea to check out another. Good luck! I hope to hear from you soon. Deb J. Maillay@aol.com


Lee R's January 26 reply to Linda ?'s January 25, 1999 - Hi Linda, While I do not have much knowledge about transplants, there is a good heart transplant section here at Jon's Place. I hope some of the others can address your issue about St. Luke's. There are a few people on the forum who have had transplants. As for me, I'm going to be 60 in a couple of months so I'm trying to be good to the heart I have. Please stay in touch with us. Your son is in our prayers. Lee. LeeRoush@aol.com


Marion M, January 26, 1999 - Hi, I don't post very often but I read everything every day. I thought our current disability insurance experience would be of interest to some of you. My husband's last day of work was in July of 1998 (he was diagnosed with CHF). Immediately the state (California) short-term disability started to pay. We had to fill out a few forms and our doctor had to return a simple questionaire but the short-term disability seemed pretty easy to qualify for and get going. It will pay monthly benefits for up to one year. After a 6 month waiting period, we qualify for our Long-term private insurance that he carried through his employer. The forms were much more complicated and there were more of them but once it was all completed, they notified us pretty quickly that they would begin paying us the monthly benefit right away.
     The private insurance company requires that we also apply for SSD from Social Security. The benefit they pay will be reduced by any amount that we collect from Social Security or state benefits, so they want us to pursue all options. If Social Security turns us down, that will not affect the private insurance payments in anyway, so it's a no-lose for us. My husband called Social Security and they set up a personal interview a few weeks later. The woman he spoke with was very nice and indicated that we would hear from them in 3 to 6 months. We were surprised to learn that if he does qualify for Social Security benefits (he is now 58), our 2 minor children will also collect benefits until they are 18.
     My husband will be officially terminated from his job one year from his last date of work. Until then, he is on a long-term medical leave of absence. I hope this has been of interest or help to you. monty5230@aol.com


Virginia R's January 26 reply to Linda ?'s January 25, 1999 - Hi Linda, Keep us informed. I'll keep y'all in my prayers. My father has been to St. Lukes (evaluated for heart transplant) there in Houston and was extremely complimentary about it. My husband's grandmother was treated there as well, in the coronary unit several times, and has done very well. She was "high high risk." Her doctor sent her flowers after the surgery. No one in my family or my husband's family had a complaint. I'm sure you must be so apprehensive. I know I would be too. Drop me a line and let me know how things are going. giniroberts@hotmail.com


Bill D's January 27 reply to Claudia's January 23, 1999 - Hi Claudia, Welcome to Jon's Place. It would seem that you are doing everything right. I would be happy if any daughter-in-law of mine took as good care of me as you are doing for your father-in-law! I have decided not to put myself in the hands of a transplant team. I know that there aren't enough hearts to go around and I would always feel guilty if I got one at age 68 and someone with their life before them didn't. Maybe he'd accept the logic in that. Bill. billdog@gate.net


Ellen, January 28, 1999 - Hi, I have a question. My husband is 45 years old. He has had one heart attack at age 40 and 3 angioplasties. He went to the doctor (internist) and was told he had CHF. The doctor sent him home with a sample medication - Lotensin? Should my husband be hospitalized immediately? yahkov@aol.com


Joseph, January 28, 1999 - Hi, Like I said in my previous post, the book "Phoenix Rising" is so good. Anyone can like it. Please read it and tell me what you think of it. I am also a writer (one of my hobbies) and if you interested in my first chapter to my short story, please e-mail me. I just need someone to talk to - I am going insane! =0) Your pal, Joseph Sanders. Thanks for the support! Joefoe2000@aol.com


Nina Straw, January 28, 1999 - Hi, My mom has CHF and IBS: irritable bowel syndrome. Her IBS tends towards diarrhea, which can be a constant companion for days on end. Many IBS sufferers take Caltrate to help this problem, which is a high dose of calcium. She has been taking it for a few days and has begun vomiting. We are wondering if the calcium could be causing this and if it has to do with the heart. Any help would be appreciated. Thank you. Dstraw7994@aol.com


Tandy K, January 28, 1999 - Hello All, I took Brandt to the doctor's yesterday for booster shots. He had been there the week before for an ear infection. Anyway, he had gained one lb in a week. I know that's not a lot for an adult but when you only weigh 18lbs, that is a considerable amount. The doctor said his lungs sounded good and I should bring him back in about 3 days for re-weigh. When he went into CHF, his lungs were not affected first, and I just wanted to know from people who know how, to know if he is retaining fluids or just getting fat. We have not restricted his fluids at this time and he is still eating baby foods and drinking formula, so sodium couldn't be the problem. Thanks, Tandy K. kephart@crosswind.net


Karen P, January 28, 1999 - Hello, I discovered your site a couple of weeks ago and appreciate the information provided, both anecdotal and otherwise. My husband Jerry, is 58. When 36, he suffered an MI and a subsequent quadruple bypass. Eleven years later he needed an angioplasty. Another 11 years later, in September of 1998, he was diagnosed with CHF, underwent a double bypass, cleaning out of the R coronary artery, and had his regurgitating mitral valve replaced with a porcine valve. He nearly didn't make it; spent 9 days in ICU. The doctors say his heart is enlarged, LV kind of thick and inflexible. All the work against the leaky valve caused the heart damage.
     He is doing fairly well now and is trying to work 3 days a week, but is not always successful. His current EF is 25%. These are his meds: in the AM - potassium, 40mg Lasix, 325mg coated aspirin, 20mg Altace, and 0.125mg Lanoxin. In the PM - 20mg Zocor and 20mg Altace. He also takes one multivitamin and 75mg CoQ10 daily. His symptoms include fatigue, bloating/indigestion, edema, sleep apnea, and inability to enjoy the good taste of most foods.
     A couple of questions: since he commutes by freeway for 45 minutes to work, a couple of times lately he has felt like when he blinks, his eyes could stay closed (drowsy). Is this the result of any meds or just the CHF raising its ugly head? Also, he can't get rid of the edema in his legs, ankles and feet even overnight, but particularly in his left foot, which is not the leg the vein was taken from if that matters. He has tried taking 80mg Lasix for a few days with no improvement. Is this situation normal or worthy of another doctor visit? I am especially wondering about the fact that it is much worse in one leg. He has tried compression stockings but we seem to think they are designed for use in the AM when all swelling is down but don't seem to do anything when worn when he is already swollen. He elevates his feet occasionally, limits his sodium to 2000mg, and watches his fluid intake. I am curious about so many things, some of a serious nature, some kind of idiosyncratic. He does have a good cardiologist but his HMO says to seek the advice of his PCP first, now that last fall's crisis has passed. Thanks. phillik@televar.com


Nancy, January 28, 1999 - Hi, My Dad's CHF was diagnosed last month while he was in the hospital being treated for pneumonia. My question is: do the symptoms of CHF manifest themselves all of a sudden, or do they just appear over a length of time? He is still recovering from the pneumonia, so I think it's difficult to determine what symptoms are from the CHF and what symptoms are from the pneumonia. He has some shortness of breath and tires easily, both symptoms of CHF and pneumonia. He was doing great before he entered the hospital, doing all of his normal activities and all. What happened? dmiller949@aol.com


Barb L's January 29 reply to Karen P's January 28, 1999 - Hi, Anytime you suspect a serious problem such as drowsiness when driving or the uncontrolled peripheral (leg) edema, you should contact your husband's doctor. It is potentially dangerous for a patient to increase or decrease medications (such as Lasix) without a physician's analysis of the drug interactions. Increasing Lasix without a corresponding decrease in the edema puts up a red flag in my opinion. Your husband needs to be re-evaluated ASAP. Barb L. blembkedvm@hotmail.com


Bill D's January 29 reply to Ellen's January 27, 1999 - Hi Ellen, Remember, we're not doctors! Most of us who answer here are patients with a lot of experience. <g> The best person to prescribe medication for your husband is his cardiologist. He's also the best person to take care of your husband, particularly if he has CHF. Most of us take 4 medications - the Ace inhibitor Lotensin is only one of them. From what you've told us, I don't see why your husband should be in the hospital. If he has trouble breathing (gasping for breath), or has terrible chest pains, (angina), or is badly swollen, you should call 911 or take him to the Emergency Room. Please find out all you can about CHF. The best pace to do that is right here at Jon's Place. Just click on the words "Site Index" at the top of this page. Start by reading "The Manual." Cut back the sodium he eats to 2,000mg per day. You'll have to read the labels and it might take a year for the food to taste good again. Bill. billdog@gate.net


Gus R's January 29 reply to Nancy's January 28, 1999 - Hi Nancy, I have a partial answer to your question about the gradual or sudden appearance of CHF symptoms. In my case they were outwardly sudden but actually, they were gradual. I went to work one morning with the idea of calling a doc if I didn't feel better by noon, and wound up in a hospital by noon. Ten days later I was headed for home, hoping I could get my small business wound up and sold before I died. To others, it appeared as if CHF had hit me suddenly out of the blue, and it even seemed a little that way to me. In thinking about it later, I realized that if I had not had my head in the sand (denial?) I would have realized there was a problem at least a year before. My decline was gradual and I kept telling myself that I was just getting a little older and was tiring easier, when in fact, the problem had reached the point that I was literally forcing myself to put one foot in front of the other much like people in earlier times forced a team of mules to pull a heavy load. Instead of a whip, I was using greed, alcohol, and a little fear of the shame of defeat. Finally, just like the old mule, I fell and couldn't get up again. Incidentally, I did get the business sold, abandoned the greed and alcohol, worked on the shame, got back up on my feet (almost), and am still going 6 years later. Gus R. gus13@net66.com


Linda M's January 29 reply to Karen P's January 28, 1999 - Hi Karen, I don't know if any of the meds your husband is on could be causing the drowsiness but I do know that sleep apnea can. I remember the sleep specialist asking my husband if he ever fell asleep while driving, or felt like he had drowsed off and my husband saying yes. I was in shock. Then I asked my husband if I was ever in the car when it happened, and he said yes. I was horrified that we both could have been hurt while he was dozing, and I didn't even know he was dozing. The doctor said this is very common in people with sleep apnea. Linda M. paulmcferrin@worldnet.att.net


Paul M's January 29 reply to Karen P's January 28, 1999 - Hi Karen, First, sleep apnea can be serious if not treated. Is your husband being treated for it? If untreated, it can cause heart damage! Don't ignore this problem. As for the edema, if Lasix is not ridding his body of the excess water, he needs to see a doctor regardless whether it is his PCP or a cardiologist. Now for your insurance: talk to your PCP about seeing a cardiologist. If you really feel he will receive better care than he is getting now, then insist that he give give you a referal. There are some PCPs out there who think they can provide good care but in reality, they fail. It appears that his drugs do not include a beta-blocker, which is one of the 4 drugs recommended for treatment of CHF. Studies show that the percentage of doctors who do not prescribe a beta-blocker when it is called for is very high! Again, this might be your PCP's fault. His dosage of CoQ10 is low. The general recommended dose for CHF patients is one MG for each 2.1 pounds of body weight twice per day. Thus, a 165 pound person would take 75mg two times/day. I hope you can get him back on the right track to feeling better. paulmcferrin@worldnet.att.net
 
Jon's Note: Paul, can you say where you got the CoQ10 dose info? Thanks.


Charlie, January 29, 1999 - Hi, My wife has had CHF for about 3 years. She is on Coreg now but it is not helping much. Her EF is 25-30. Do you know anything about endoventricular circular path plasty - the Dor Procedure? It has been done on CHFers. Thanks. Charlie. gibsonc@kdsi.com


Paul M's January 30 reply to Jon's January 29, 1999 - Hi Jon, There are no exact dosages for COQ10. I saw an article over a year ago that stated the dosage I posted. The number of articles on CoQ10 has since grown by leaps and bound. In my quick search, Dr. Peter Langsjoen's introduction to CoQ10 stated from 100 to 300mg per day at www.csi.unian.it/coenzymeQ/introduc.html. In another article, I saw a suggested dose ranging from 60-200 mg per day. http://www.spiritriders.com/newhealth/lifeplus/coq10/article.html. We also need to keep in mind that a number of factors affect the amount of absorption into the body. Such factors include the form of CoQ10 being taken (gelcap, etc,..?), what foods are being taken at the same time (fat), and of course our individual bodies. I think there is one thing we can all agree on: It's expensive! One article I read stated that there are not enough CoQ10 manufacturers, thus CoQ10 is in short supply world-wide. One other thing to note as you search the Web for information on CoQ10 is that a lot of Web sites having information on CoQ10 are also affiliated with selling it! If they are selling it, you know they are going to push it with some of their own facts. So stick with trusted authorities such as Peter Langsjoen, who is a doctor and researcher in this field. I'm not saying that all other sources are untrusted, just beware of your source. paulmcferrin@worldnet.att.net


Bill D's January 31 reply to Charlie's January 29, 1999 - Hi Charlie, About 4-6 months ago, a woman posted that her husband had the Dor Procedure and it killed him. She was beside herself with anger because she said the doctors hadn't warned them how dangerous it was. Back then, I was able to find quite a lot about the procedure. The site I found had pictures and it seemed the procedure was replacing the aortic valve with another of her valves, and then replace that with an artificial valve. The two looked about the same size. Unfortunately, 2 hours looking through Jon's Archives and two more working with all of the search engines wasn't rewarded with the Url for you with the pictures. I did find this information though. The doctor's name is Vincent Dor and he's in Monaco. I guess there are lots of wealthy patients there! He's at "Centre Cardio-Thoracique de Monaco." Last year he attended a conference in Cleveland given by the famous Cleveland Clinic. He talked about mitral valve repair and cardiomyplasty. A doctor named Heller uses his technique for a similar operation called the Heller-Dor procedure. Sorry I couldn't find the pictures and the description of the operation. I did want to let you know what I found. I would sure get that doctor to explain every detail. Bill. billdog@gate.net
 
Jon's Note: Bill, do you remember who it was that posted about her husband?


Jane, January 31, 1999 - Hi, My father, who is 85, has been told by his doctor that he has to have open heart surgery or he will not live very long. Two years ago, this same doctor did an angiogram and my father had problems while they were doing it so they decided to not do the operation until it was absolutely necessary. Apparently, the doctor feels that time is now, even though my father's chance of survival is quite slim. They want to replace the valve which is in the main artery coming out of the heart and he also has an aneurism on his left ventricle. They have not talked about removing it. I would like to have some questions which can be posed to the doctor when my brother and father meet with him next Thursday. I live out-of-state so I will e-mail these questions to my brother. Thank you! JAMonarch@aol.com


Lesley H, January 31, 1999 - Hi, I am so glad to find this site. Mom has Class 4 CHF. She had another heart attack in late October, 4 stents inserted first of December, and now has daily angina attacks. She is in the hospital right now because of the severity of pain. She is on oxygen and the doctors keep telling me she is maxed out on nitroglycerin patches, beta-blockers, Ace inhibitors, etc. I've done a lot of searching on the pharmacy pages and am getting pretty discouraged of finding anything new to help her. We no longer go anywhere. I make quick runs to the store for necessities but otherwise we sit and wait for the next set of pains and I then give her more Sorbitrate, sometimes accompanied by Darvocet (she can't take nitro orally).
     Her friends have mostly disappeared with vague promises of "let me know if I can ..." only to find a reason why they can't, when I call. She takes comfort in watching some television, but lately she is doing more sleeping than watching. She can't read since the stents were added because she is diabetic and the floaters in her eyes became much worse after the surgery. I realize this condition is not one that will get better. Mom has been declining for the past 5 years, but her recent loss of interest in favorite TV shows and her inability to get out (weakness) have really hit her hard. I've wracked my brain, but am running out of ideas to keep her entertained and her spirits up. I can't ask my sister to help, since her version of help is to come over and berate Mom for not losing weight, bringing this on herself, causing us problems, smelling due to incontinence, etc. I am doing my best but have run out of ideas for how to keep Mom's spirits up. Can anyone suggest what has worked for them with their loved ones? LesleyHerr@aol.com


Jon's January 31 reply to Charlie's January 29, 1999 - Hi Charlie, There is a study abstract at http://www-east.elsevier.com/jac/2907/jac1989abs.htm about endoventricular circular path plasty. It appears to be a repair of the scar caused by a heart attack - reducing the size of the left ventricle - possibly along with bypass surgery to some extent at the same time. Success seems to rest largely on the remaining amount of wall motion by the left ventricle before surgery. It's tough to find info on this surgery. Jon.


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

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