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

Sharon G 5-1     seek biventricular pacer experiences & Dallas doc info
 
Phyllis E 5-1     cardioversion went very well
 
Donna 5-1     how to tell if I am healthy? & more
 
Jon's 5-1 reply to Donna's 5-1     one possibility
 
Sharon G 5-2     seek biventricular pacemaker info
 
Derald G's 5-2 reply to Phyllis E's 5-1     that's great news!
 
Sandy 5-2     a thank you & CoQ10 experience
 
Nick Lamer 5-4     seek CHF specialist in Los Angeles, California
 
Susan B's 5-4 reply to Sandy's 5-2     inexpensive CoQ10 source
 
June L 5-4     seek right-sided CHF and pulmonary hypertension experiences
 
Millie 5-4     what about all these emotions? & more
 
Sandy's 5-6 reply to Millie's 5-4     coping with the emotions
 
Bob's 5-6 reply to Phyllis E's 4-30     CoQ10 experience
 
Anita S' 5-6 reply to Millie's 5-4     coping with the emotions
 
Jan's 5-6 reply to Nick L's 5-4     UCLA heart failure doc
 
Norma 5-8     seek advice on father's attitude
 
Jon's 5-8 reply to Norma's 5-8     terminology
 
Shelby H's 5-8 reply to Norma's 5-8     maybe counseling would help
 
Judy's 5-9 reply to Millie's 5-4     seek suggestions
 
Marsha's 5-9 reply to Norma's 5-8     my experience
 
Sharon 5-11     seek CHF doc in Birmingham, Alabama
 
Norma 5-13     thank you
 
Kathy S 5-14     I can relate - coping
 
Jeff 5-14     seek CHF doc in New Jersey
 
Sandy 5-14     how do I get past my reverse denial?
 
Karen S' 5-15 reply to Sandy's 5-14     coping & more
 
Jon's 5-15 reply to Karen S' 5-15     wondering about that religious saying
 
Kelly's 5-15 reply to Sandy's 5-14     coping
 
Marsha H's 5-15 reply to Sandy's 5-14     coping, grieving & more
 
Lisa's 5-16 reply to Sandy's 5-14     coping
 
Nat 5-16     intro
 
Phyllis E 5-16     update on husband's cardioversion
 
Nat's 5-16 reply to Sandy's 5-14     coping
 
Derald G's 5-17 reply to Jon's 5-15     scriptures
 
Roger's 5-17 reply to Jon's 5-15     scriptures, Norvasc question
 
Jon's 5-17 reply to Roger's 5-17     scriptures, calcium channel blockers
 
Millie's 5-17 reply to Sandy's 5-14     coping
 
Sandy's 5-17 reply to Nat's 5-16     about this site & more
 
Derald G's 5-17 reply to Phyllis E's 5-16     thank you for the post
 
Sharon 5-18     seek CHF doc in Arkansas
 
Nat D 5-18     thank you & more
 
Nat D's 5-18 reply to Roger's 5-17     calcium channel blockers and heart failure
 
Jon's 5-18 reply to Nat D's 5-18     calcium channel blockers and heart failure
 
Nat D 5-18     seek suggestions for helping CHFer cope
 
Nat D's 5-18 reply Jon's 5-18     calcium channel blocker questions
 
Nat D 5-18     does CHF get better?
 
Karen S' 5-21 reply to Nat D's 5-18     fighting for SSD & more
 
Kathy S 5-22     my mom died and a recommendation for good doctors
 
Kathryn 5-24     kidney stones and water intake questions
 
Anita S' 5-24 reply to Kathy S' 5-22     condolences
 
Debrah 5-24     what is CoQ10?
 
Jan's 5-24 reply to Kathy S' 5-22     condolences
 
Derald G's 5-24 reply to Kathy S' 5-22     condolences
 
Peggy's 5-24 reply to Phyllis' 5-16     dofetilide for treating a-fib
 
Kelly's 5-25 reply to Kathy S' 5-22     condolences
 
Donna H's 5-27 reply to Karen S' 5-21     husbands missing law enforcement jobs
 
Kathy S' 5-29 reply to Debrah's 5-24     my mom's CoQ10 experience
 
Kathy S 5-29     thank you
 
Roseanne S' 5-29 reply to Sandy's 5-14     coping & more
 
Millie 5-29     nervous about testing husband's ICD tomorrow
 
Kelly's 5-30 reply to Millie's 5-29     thinking of you
 
Sandy 5-30     thank you and update
 
Karen S' 5-30 reply to Donna H's 5-27     great response made me smile
 
Kelly's 5-31 reply to Sandy's 5-30     overdoing it & more
 
Russ 5-31     seek CHF specialist in Columbus, Ohio
 


Sharon G, May 1, 2002 - Hi, I haven't posted in over a year but now my mom who has CHF has a new doc and he is advising her to maybe get a biventricular pacemaker. The doc would be Dr.Yancy at SW Medical Center in Dallas, Texas. We live in southern Oklahoma and don't have any CHF specialists near. Her EF is 20% and this new doc seems to think this might be her chance. She is 78 and in reasonably good health otherwise. She was told 2 1/2 years ago that she had 6 months to live but she is still here and going strong.
     Has anyone ever had this procedure done or does anyone live in the Dallas area that knows of this doc? Thanks for your info. I went and printed some info on the procedure but haven't found anything on this doctor yet. I'd appreciate any input. Thanks again, Sharon. sugspice@brightok.net


Phyllis E, May 1, 2002 - Hi, I have another update. My husband had the cardioversion and his heart is in perfect rhythm. What a beautiful sound to listen to instead of how it was. This morning he felt so much better. So far all is well. I will keep you posted, Phyllis E. phernsberger@peoplepc.com


Donna, May 1, 2002 - Hi Jon and everyone, I just want to say thank you for this site. I have just become seriously involved with a heart transplant recipient of 5 weeks ago and your site has given me so much information.
     I have been fine until now but I am feeling nervous and afraid because he is having a crucial biopsy today. This is the first one after 2 full weeks. I know it becomes routine for a heart transplant recipient but I am new to this and I am nervous about everything. I keep wondering what would happen if I passed on something to him unknowingly. He is asking today if there is anything I need to do (like blood or urine tests) to make sure I'm completely healthy too. Does anyone have a quick answer for me on this? Thanks for the support and the opportunity to talk to others in this position. donnalbelcher@yahoo.com


Jon's May 1 reply to Donna's May 1, 2002 - Hi Donna, A white blood cell count can spot internal infections, I think. This is done with a simple blood test. Your best bet is to ask the transplant cardiologist your boyfriend sees. Jon.


Sharon G, May 2, 2002 - Hi, Mine was lost so here goes again. My mom has CHF and was given an option yesterday of being considered for a biventricular pacemaker by a Dr. Yancy in SW Medical Center in Dallas, Texas. Has anyone ever had this procedure done, know of Dr. Yancy, any helpful info on the relatively new procedure? Mom's EF is 20%, was told it was 10% but now they say the doc told us wrong and he had written 20% in his report. Mom was given 6 months to live 2 1/2 years ago but she fooled them <g> and is doing pretty well most of the time. Oh, she is in her upper 70s and is in relatively good health otherwise. Any thoughts on if this is advisable or not? I appreciate any and all info. Thanks, Sharon. sugspice@brightok.net


Derald G's May 2 reply to Phyllis E's May 1, 2002 - Hi Phyllis, It's great to hear about all of the good news. Your husband is feeling better and you finally got the SSD. Good for you guys! deraldg@earthlink.net


Sandy, May 2, 2002 - Hi, My limited vocabulary does not include the correct words to properly thank all of you for the support and encouragement you have given me. I check this site every day knowing I'll find friends here that actually understand what I'm going through, friends who have "been there, done that," friends that feel what I'm going through and are willing to take my hand and lead me though it. Thank you.
     As to the question of CoQ10, my husband takes this. His cardiac surgeon is the only one in this area that prescribes it. We have 3 cardiac surgeons and quite a few cardiologists here and they all practice "the same" but for some reason my hubby's cardiac surgeon has better outcomes and better long-term outcomes. No one knows why. Again, he is the only one that prescribes CoQ10.
     While in the hospital after the CABG, he was on 300mg per day. For home, he's on 200mg per day. The CHF nurse practitioners say hubby can stop the coenzyme. The surgeon says he should stay on it for as long as we can afford it! Walmart is the cheapest we have found. From what I've read, coenzyme seems to be a great thing. Hubby will keep taking it for as long as we can afford it. Taking statins does reduce CoQ10 levels so you must take higher doses.
     Again, a great big hug and a great big thank you to all of you! You have been so much help and offered so much support! Sandy. sandy4014@aol.com


Nick Lamer, May 4, 2002 - Hi, I'm trying to locate a specialist, or a site that lists Congestive Heart Failure specialists in Los Angeles. Can anyone help me out here? nickdangerrr@aol.com


Susan B's May 4 reply to Sandy's May 2, 2002 - Hi Sandy, We have found the CoQ10 at Sam's Club (related to Wal-Mart). I don't know if you have a store by you but it is the cheapest place we have found it. Good luck, Susan B. gbracher@kc.rr.com


June L, May 4, 2002 - Hello all, My 73 year old mom has had asthma all her life, and COPD for the last 7 years. Now, we are exploring right-sided CHF, possibly pulmonary hypertension. Has anyone else out there had similar experience and can give real world advice? Thanks. siriusalien@aol.com


Millie, May 4, 2002 - Hello everyone, Just a quick update. My husband Dave has gone back to work this week, one month after having surgery for his defibrillator, two caths and a one week hospital stay. I am amazed at how he is doing (knock on wood). I am still holding my breath though, you know, waiting for the other shoe to fall. I am hoping these feelings will soon start to diminish.
     I kind of had a weird thing happen last night though. I was hugging Dave and I was on the side where his ICD unit is and all of a sudden I felt so sad for him, I actually almost started to cry. I didn't let him see how emotional I was getting though. It was like some kind of delayed reaction, I think - oh no he has heart failure, what will happen, how long before something bad happens?
     I seem to have a lot of strange emotions lately when I should be jumping for joy that he is doing so well. Does anyone have any thoughts? Millie. mandrews@choiceonemail.com


Sandy's May 6 reply to Millie's May 4, 2002 - Hi, You and I seem to be going through so many similar things at the same time, Millie! Although, my hubby won't be able to return to work for another couple of months because of his CABG and CHF.
     My concern is your statement, "I didn't let him see how emotional I was getting, though." I may be wrong here, and hopefully some of the CHFers will direct us, but it is my thought that it does couples a lot of good to share their emotions. Your hubby may be having those periods of emotions also. Hopefully, he doesn't feel that he needs to hide them from you.
     If you both keep this bottled up, something is gonna blow. While you were hugging each other just might have been a great opportunity to let go and let him know how afraid you have been and how happy you are that he got medical attention. It might have given him permission to unload some of the emotions he's carrying around also.
     Just my 2 cents. Best to you and your hubby Millie! ;-) Sandy. sandy4014@aol.com


Bob's May 6 reply to Phyllis E's April 30, 2002 - Hi, I have been on CoQ10 for over 2 years. I take 300mg a day and I credit it with my improvement. Good luck. bignick42@aol.com


Anita S' May 6 reply to Millie's May 4, 2002 - Hello Millie, I understand the emotions that you are going through. When Phil was first diagnosed I couldn't hug him without crying. Sometimes I would wake up and look at him and cry. He is not the type of person to even let me see him cry, but he held me when I cried. I think it is important, as Sandy said, to go through some of these emotions together.
     Phil was not allowed to go back to work, but I had to go to work about 3 days after he got out of the hospital, and I called home every 2 hours for the first few weeks to see if he was still alive. Luckily, I had a job where they were very understanding about that. I have not worked since 1996 because we go to the doctor's so often because of his many illnesses. As time goes on, you will be able to cope with his illness without breaking down all the time. It does get easier to deal with. Just hang in there and feel free to vent here whenever you need to. Jon's place is a blessing for all of us who need this site. Take care, Anita. dreamersila@netscape.net


Jan's May 6 reply to Nick L's May 4, 2002 - Hi Nick, Dr. Michelle Hamilton at UCLA runs the Congestive Heart Failure section. She is fabulous, but extremely busy in practice as she is a clinical professor as well. I am sure her office can give you a good referral. Good luck and God bless. vstuart11@hotmail.com


Norma, May 8, 2002 - Hi, My dad got released from hospital a month ago after a near fatal episode, in great spirits and high hopes. He has been told the CHF is in abatement for now and his heart health is pretty stable - all good news. He has, however, now (4 weeks later) slipped back into his previous acute depression. He is not getting out of bed, not washing, is keeping the drapes closed and acting like that's what life is like for all 73 year olds. He's also making my mom's life a misery and draining the life out of her with his demands and self-pity.
     When any of his health professionals are around he perks himself up and tells them all the lies he thinks they want to hear. My mother has always been very subservient to him and won't contradict him. He won't even consider getting psychiatric help. My sisters and I are having a real hard time trying to deal with this. I would appreciate any advice or guidance from any of you who have been here. johnstewart@cogeco.ca


Jon's May 8 reply to Norma's May 8, 2002 - Hi Norma, Depression may not be the problem. I have not heard of many truly depressed people "perking up" for anybody. Jon.


Shelby H's May 9 reply to Norma's May 8, 2002 - Actually, I have seen depressed people "put on a face" for short periods of time and be pretty convincing, particularly if the person knows what the doctors want to hear. Norma, unfortunately, you can't force a depressed person to get better if they don't want to get better. However, this does not mean that you and your family have to be held hostage by his negativity. You, your sisters, and your mom might be able to really benefit from family therapy, even if he doesn't go. You'll get an opportunity to discuss your feelings, and the therapist can give you some suggestions on how to handle your father. You can also learn how to support each other.
     Tell him that you believe he is depressed, that this situation is difficult for all of you, that you have made a family therapy appointment, you would love it if he would join you but you're going with or without him. Don't forget that as a family member, you need support too. It's not always intuitive what we should do. None of us are born with the knowledge of how to get through things like this and there's nothing wrong with getting help and learning how to cope. Good luck, Shelby. shelbyscout@hotmail.com


Judy's May 9 reply to Millie's May 4, 2002 - Hi, Strange emotions does not even come close to describing the roller coaster of emotions that I go through. I want my husband to exercise but not too much. I want him to help out but not too much. I want him to rest but, etc,... I am scared, angry, confused, hopeful, grateful and loving, all within 15 minutes. The emotional toll on both of us is huge! Yet we have hope and go about our business with determination and resolve that whatever comes next we can face it together. Bill's fatigue is a big obstacle to a quality life. Any suggestions? judithabarr@aol.com


Marsha's May 9 reply to Norma's May 8, 2002 - Hi Norma, Your father sounds an awful lot like my husband's father. He did not have CHF but he did have arthritis and COPD. I am thinking that a little "tough love" may be in order here. In case you're wondering, I'm the heart patient in our family. Our family ended up taking steps to have daddy placed in a nursing home because he was completely depleting his wife's energy. We gave him plenty of warning so that he could change his ways if he wanted to do so, but he didn't.
     We put him in the hospital during a medical crisis and - it was a miracle - he was so much better, but when he was released he was back to his old ways within a few days and refusing to cooperate with any of the rehab people. So we finally placed him in a nursing home because we knew that we were going to have two nursing home patients or one dead wife and one nursing home patient.
     We were all very sorry for the sadness it caused both of them, but we are all 100% sure it was the best thing we could have done for both of them. Daddy had time and needed to contemplate the way he treated people and had worked on repairing relationships before he ultimately died peacefully from the COPD. The key for us was that the kids took over the decision-making process from momma so we became the bad guys. Today she thinks we were the good guys. jeffsmimi@earthlink.net


Sharon, May 11, 2002 - Hi, My 70 year old mother in law has been diagnosed with CHF, and has recently moved to Birmingham, Alabama. Can anyone recommend a CHF specialist in the Birmingham area? If you have any suggestions or recommendations, I'd sure appreciate hearing from you. Thank you, Sharon. mac1@fdn.com


Norma, May 13, 2002 - Hi, I just want to extend my thanks to Jon, Shelby, and Marsha for responding to my post. I am truly grateful for your input and will be sharing your experience and suggestions with my sisters and my mom. It's hard to know when the fine line of physical illness and emotional illness is crossed and how to deal with the emotional issues with a chronically ill family member. The best medicine is knowing that I (and my family) are not alone in facing this sort of thing. Your support is appreciated with all my heart. johnstewart@cogeco.ca


Kathy S, May 14, 2002 - Hi, I've been here many times reading and have written in. I can totally relate to Karen S. Mom has had CHF since 1997, and through it all she has had good times and not so good times. I run out of answers when someone asks about her. I also realize how very little I myself knew of this illness before she was diagnosed.
     I've been on this emotional roller coaster for awhile and she now gets to include dialysis in her routine since her kidneys have also failed. She has an EF of less than 10% but she has shown me such strength through it all. To me the bottom line is how strong the spirit is and she has indeed rallied over and over. So I look to her and pray if ever I have to go through this that I can endure as she has. kcn0323@aol.com


Jeff, May 14, 2002 - Hi, I'm seeking a CHF specialist in Northern New Jersey (Summit). Thanks. jeffginny@msn.com


Sandy, May 14, 2002 - Hi, Is anyone else out there going through "grief" with this, or is it just me? We had so many plans for retirement, so many plans on what we were going to do with our grandchildren whenever they get here! Our kids are 19 and 17 so we are not rushing them. ;-)
     Though I want the information, it's difficult for me to accept that his CABG may last an average of 7 years. He has a cousin that is healthy after 14 years! It is difficult for me to accept that with CHF one never knows, and it might be a year or it might be 40 years. Can we plan a future? I'm 44 and he's 52 or do we just continue this day to day thing? When will we know that life can go on, that we can count on each other being here the next day?
     On the other hand, we are soooo lucky. He was started on Coreg at a double dose and then doubled that one week later with no side effects. He's on Prinivil and that has not caused any side effects. He just started digoxin (Lanoxin) with no side effects. He's recovering better than I am. I can't get past the grieving. I know that life will never get back to normal as we once knew it, but when can I expect to get my brain back, when can I expect that I can function normally again?
     This is so hard and I'm not even the one with the heart problem! I walk around in a fog. I can't remember things, I miss appointments, I live minute to minute, so afraid that he's going to die, so afraid that our last conversation was indeed our last. This is so hard. My friend says that God never puts more on your shoulders than He knows that you can handle, but this time I am wondering, Sandy. sandy4014@aol.com


Karen S' May 15 reply to Sandy's May 14, 2002 - Hi Sandy, Be assured that you are not going through this alone. My husband is 55 and I am 46. He had great plans for retirement. He had a contract lined up which would bring in income in excess of his normal annual income working 6 months out of the year doing something he loved to do. Now we are trying to figure out how to survive on a reduced income.
     Luckily, I have a well paying job but it is a very stressful, demanding job with little appreciation. I am very fortunate that my husband is alive and I try to remember that. Last night, I felt as if I were at the end of my rope. As I was lying in bed, upset over my demanding and unappreciative boss and my sick and emotionally challenging husband, the 23rd Psalm popped into my head. I kept trying to recite it and each time I remembered more of it. It made me feel better. When I drove to work this morning I also tried to recite it. What I expected to be a really bad day turned into a pretty good one.
     In my job the lives of other people are affected if I do not perform well. I have also questioned the concept that God does not give you more than you can handle. I thought yesterday that I could not cope any longer. Today I feel better. I think we just have to take it day to day, sometimes hour to hour, and see what it brings. Just remember that you are not alone and there are friends here to help and listen. Karen S. gstilley@hotmail.com


Jon's May 15 reply to Karen S' May 15, 2002 - Hi guys, Just out of curiosity, can you tell me where you heard that God doesn't give you more than you can handle? I hear this a lot but have never read it anywhere myself.
      Me, I figure God gives me more than I can handle all the time. It's the one sure way He can turn my head to Him and make me rely on Him. It works in my case. <g> Jon.


Kelly's May 15 reply to Sandy's May 14, 2002 - Hi, I think people with CHF have up and down days, but then don't we all?! Living each day to the fullest and enjoying the good days is the goal. Dwelling on the future or past just sometimes makes things seem impossible. Praying has helped me, and this board has been a tremendous help.
     Sandy, hang in there. Our situations are a lot alike, except that the age difference is reversed: he's 34 and I'm 42. He's the CHF patient and I'm trying to stay as healthy as possible. Do take an hour a day for you. Read, sew, go for a walk, whatever it is you like to do. That's very important. Good luck to you. larkel@locl.net


Marsha H's May 15 reply to Sandy's May 14, 2002 - Hi Sandy, We all go through the grieving process and so do our families. Many of us have resolved our grief and are moving on with our lives, perhaps with a different focus, or more focus. There are reminders that sometimes bring us briefly back to grieve over something lost, so it may never be gone to stay but you can move beyond this stage of raw emotion if you will give yourself permission to grieve and also have the courage to work through it with honesty.
     I try very hard as a patient to focus on what will be important to me 50 or 100 years from now. It gives my attitude and life so much more beauty and peace. If you have not read Dr. Silver's book, then you need to run to the nearest book store or library and read it just as soon as you possibly can. It did more for helping me with my attitude than anything. May God bless you to find the peace you need these days. jeffsmimi@earthlink.net


Lisa's May 16 reply to Sandy's May 14, 2002 - Hi Sandy, Even though it is my dad and not my husband, I can totally understand how you feel. My dad has DCM and CHF along with a bunch of other "little" problems.
     Back in January of 2001, my dad went into cardiac arrest twice. One of the times I was sitting in his hospital room with my mom and we both witnessed the whole thing. Both times they brought him back. This all happened within a span of about 32 hours, the longest 32 hours of my life. For months and months, and sometimes even now whenever the phone rings, I am afraid it is "the call." I don't have any brothers or sisters and I am extremely close to my parents. Sometimes I wake up abruptly at 4:00 AM gasping and my husband will say, "It's okay honey, he's still here."
     I wonder if the fear will ever subside but I tell myself every day that the fear is a thousand times better than what I witnessed in those 32 hours. I have always loved and appreciated my family but now I treasure every moment we spend together. It is amazing what we take for granted until we are faced with death. Sometimes I can only deal with it in 15 minute intervals, not even day by day.
     Do whatever works for you. I wish you and your husband the best. Jon, you have truly blessed all of us by providing this site. It is a relief to be able to communicate with people that understand, and I read the posts every day. I hope you are improving and coming out of your "rough" time. zeigler@zbzoom.net


Nat, May 16, 2002 - Hi all, My husband is 42. He has CHF and a bunch of other health problems. He's had two heart attacks, a TIA, pulmonary edema, extreme hypertension, and sleep apnea, to name a few. I was hoping for a place to basically vent, talk, share, get myself as informed as I can, and all that. :-)
     He's applied for disability. His docter is one of the docters Disability sends people to for evaluation and she was very direct about him not being able to go back to work, but now Social Security is setting him up for mental examinations and sending us questionaires to fill out about what he likes, what books he reads, and what tv shows he watches, so I am wondering if we shouldn't get a lawyer.
     My husband is pretty afraid that Social Security will mess him around until he has another heart attack. His father died waiting for disability with pretty much the same problems my husband has. Anyway, right now we have more questions than answers. I am kind of bad at introductions so I'll leave it at this for now and read your messages. Rosie@usol.com


Phyllis E, May 16, 2002 - Hi, I would like to post another update on my husband's cardioversion. His normal heart rhythm only stayed for a week. Atrial fibrillation is a tough one. They want him to have an ablation later. Still, the good news is that his CHF and cardiomyopathy are okay and that is just amazing to me. For those who are grieving over their young husbands with CHF, I went through such suffering at first thinking he was going to die in 5 years (he was 50 years old) and today 4 1/2 years later, it looks like he has beaten this thing, Phyllis E. phernsberger@peoplepc.com


Nat's May 16 reply to Sandy's May 14, 2002 - Hi, You know, I have that too; there are moments we feel optimistic and times that we're really, really scared. Every now and then I realize that I've been out of touch with my emotions and it comes crashing back. Sometimes it's hard to just enjoy the moment and hard not to blow times we do have together. I don't know if it helps but I guess it's a compliment to anyone to be loved like that.
     I come from a family where many people have been hurt badly and have become bitter. For me, loving is all the more wonderfull and precious because of it. Facing losing my husband is the scariest thing I've ever faced in my life. Although I am fairly young (probably younger than many of you) I've seen my share of scary stuff. Now if, hopefully 50 years up the road or so, he does die, I'll fall in a huge hole.
     I know up front that this will never be easy and it will definitely take about all my strength and courage to get through, but at the same time I feel very blessed. My husband and I, for different reasons, never expected to find love, to marry, to have children, to have a life so different from what we imagined it'd be. I never expected I could love like this or find anyone who'd love me like this.
     He's a grouch, not the most likable guy for most people; he's blunt and often doesn't keep promises he makes but for me he's perfect. He's also loving, in touch with his feelings, and has a way of making me laugh when I feel irritated and out of touch with myself. He also is a wonderful, wonderful person.I've never felt as close to anyone in my life as I feel with him, so connected, and it scares me to think I could lose him, but at the same time I feel just how special it is what we do have together.
     So many people search for love, relationships, someone to love and we've found that and I do believe that it's the same love that hurts me so much that will pull me through. I am so scared to lose him because I can feel already how incredibly much I'd miss him, but for now I get strength from being with him, from knowing that he loves me as much as I love him. I hope he stays with me as long as possible but I also think that in the end I'll pull through. I hope you can find the same bittersweet feeling of strength in that as I can.
     Fear isn't a bad thing, it makes us react as right as we can, it makes us stronger than we thought we could be, when we need to be. It's panic that paralyzes. I hope this helps a bit. Rosie@usol.com


Derald G's May 17 reply to Jon's May 15, 2002 - Hi Jon, Try 2 Co 12:9. I think that comes from the phrase "My grace is sufficient unto thee." There's also another verse somewhere I think that says something like will not test (or tempt) you more than you can bear. I'll try to find that. deraldg@earthlink.net


Roger's May 17 reply to Jon's May 15, 2002 - Hi Jon, Regarding the religious saying question, maybe 1 Corinthians 10:13 is being referred to. I am a 52 year old, male CHFer and diagnosed as such May of 1997. I work 40 hours a week in a stressful occupation and work out 5 days a week on a treadmill, mow the lawn, and use light dumbbells. I feel very good. Besides many other medicines, I take 15mg Norvasc daily. Is this okay? I thought I read CHFers should not take Norvasc. I thought I would ask you before going to my doctor. Thanks for this ministry, may God bless you and your family. rjhughs@juno.com


Jon's May 17 reply to Roger's May 17, 2002 - Hi Roger, I rather suspected that was the one. I just read something different in it is all. ;-) I know that God has dumped more on me than I can handle several times and it has so far always driven me closer to Him.
     The Norvasc question is highly individual. In general, CHFers should not take calcium channel blockers, period. This class of drug generally increases our risk of death. If we do take a CCB, we should try amlodipine first (Lotrel, Norvasc) because it has been proven to have no effect on mortality in heart failure patients, either positive or negative. However, with that said, there are a few patients who may actually benefit from a CCB. Just be sure your doc has specific reasons to place you on the drug and that other drugs will not do the same job with less risk (hydralazine, nitrates). Jon.


Millie's May 17 reply to Sandy's May 14, 2002 - Hi Sandy, I understand completely how you feel. My emotions are crazy right now. My hubby is doing really well but I can't seem to get it back together. I am not getting worse, just not a lot better.
     I think that we have to try to remember that we are not going to be any good to them if we are a mess. Sometimes I do feel like I am a mess, emotionally, that is! <g> Lately he is very tired again and I am getting concerned. He said that it is nothing, but I think that he is in some denial and I am afraid that is going to hurt him. We are going to the doctor on the 30th, at which time they will put him under and test his ICD, and also see how his heart is doing. I will be very anxious until then.
     By the way, my husband is 50 and I am 46, so I know how you feel. We have one daughter who is 29 and she is a great comfort to us both,. She lives very close by so we see her a lot. With that, I think we need to rely on our family a little more. Sometimes when I can't seem to take any more she comes over and we laugh and just forget about our CHF lives, and talk about fun stuff. Try it - no CHF talk for one day! By the way, I'm not trying to make it sound really easy to do, but try. Good luck to you and feel free to e-mail me anytime, Millie. mandrews@choiceonemail.com


Sandy's May 17 reply to Nat's May 16, 2002 - Hi Nat, If you are looking for a place to basically vent, talk, share, get yourself as informed as you can, "You've found the right place!" I've only posted here a couple of times, but the responses I've gotten have been overwhelming.
     To all of you, thank you so much for the understanding and caring you have shown me. This has been very difficult for me. Knowing you folks are here and care enough to share with me helps so very much! :-) Sandy. sandy4014@aol.com


Derald G's May 17 reply to Phyllis E's May 16, 2002 - Hi, Thanks for those words. I just passed them on to my wife. I'm 45 and sometimes she just looks at me and cries. deraldg@earthlink.net


Sharon, May 18, 2002 - Hi, I am looking for a doctor in Arkansas that is a CHF specialist. There is none listed on the web page but I was hoping there might be one that someone is aware of. My mother has had CHF for about 10 years and is now to the point they were talking valve replacement until the cardiologist did a cath and said she wasn't a good candidate. Her EF is 20%. Her heart is enlarged and she had fluid built up around her lungs and heart. Does anyone know of a doctor in Arkansas? I would appreciate any help. Thanks, Sharon. sba@cyberback.com


Nat D, May 18, 2002 - Hi Sandy, Thanks for the kind words. :-) Sandy, I am glad I found the right place. I kind of was hoping for that. It has to be as hard for everyone here but it feels good to be able to share. Thanks. Rosie@usol.com


Nat D's May 18 reply to Roger's May 17, 2002 - Hi Roger, My husband is on Norvasc too. Since I'm new to all this, why is it bad for CHFers? I might be totally off but does the fact that my husbands' arteries are clear (clean, no plaque whatsoever) make a difference? Just curious, thanks. Rosie@usol.com


Jon's May 18 reply to Nat D's May 18, 2002 - Hi Nat, No one knows why, but clinical trials have shown over time that calcium channel blockers raise risk of death in people with heart failure (and in other people too, for that matter). Amlodipine (Norvasc, Lotrel) is the only CCB that has shown no effect on mortality in CHFers to date, so if you really need extra blood pressure control, amlodipine is the only proper choice of calcium channel blockers. However, I always suggest that you quiz your doctor about alternatives that have less serious possible adverse effects, like hydralazine or nitrates. Jon.


Nat D, May 18, 2002 - Hi, I noticed on the site that CHFers have times that they feel there is something "wrong" with them or have the feeling they're going to die. My husband has that at times; for him it's a "floaty feeling of not being all the way there" and when it happens it really upsets him. The only thing I've come up with so far is to just be with him and wait till it passes. Does anyone here have any other suggestions or tips that might help, or maybe tips on things that you noticed to avoid to make it happen less or at least less intensely? Thanks. Rosie@usol.com


Nat D's May 18 reply to Jon's May 18, 2002 - Hi Jon, This makes a bit more sense now. His hypertension is very bad so that might be why he's on the Norvasc. At his first doctor's office visit after the stroke and heart attack, before he was on the blood pressure meds, his BP was around 240/180. Right now on the meds it's around 140/100. I will definitely ask about this on our next doctor's visit. The meds block calcium? Is calcium bad for CHFers? How about things like Tums? What does this mean for their bone structure? Did I misunderstand? Thanks again, Nat. Rosie@usol.com


Nat D, May 18, 2002 - Hi, Our regular physician also happens to be a physician that evaluates people for Social Security disability determination, so when she told us that the idea of my husband going back to work is totally ridiculous, we were upset of course but also relieved in a way because quite frankly I don't see how he could either. He had set his hopes on it because he doesn't like being a "burden" on the system although he does realize he's payed for this all of his life. She told us very clearly that he could come to feel better with meds, diet, etc,..., but that he wouldn't be cured and that he still wouldn't be able to go back to work.
     Now his cardiologist told us that maybe there might be a job he could do and a nurse (the cardiologists' main nurse) told us that with a little time and effort he'd be good as new and that he'd just need to be on a diet without meat and exercise and lose weight, and then his health problems would just disappear. She knew the results of his heart cath and his file. He's got extreme hypertension, severe biventricular CHF, edema, sleep apnea, has had a TIA, 2 heart attacks, angina, morbid obesity, and breathing problems.
     Except for the hypertension, which he's had all his life, he's always been a bit heavy but never like this. Maybe all this developed over the last 2 years after he had an accident at work which landed him flat on his back for 4 months. The injury from the accident healed as much as it will, but it's where everything else started going downhill really fast. He used to be one of the most physically active people I know and right now he's physically a shadow of who he was barely 3 years ago. I realize no one here is a doctor but does CHF really get better? Rosie@usol.com


Karen S' May 21 reply to Nat D's May 18, 2002 - Hi Nat, My husband just got his second denial from SSD. We have an appointment with an attorney to go to the next step. You really have to find the humor in some of these situations. My husband was a law enforcement officer. I certainly don't want my family or friends relying on the protection of an officer who cannot walk far, let alone run, who gets confused (which one is the bad guy?), who has to go to the bathroom immediately when the Lasix kicks in, who cannot climb stairs without difficulty, and who sometimes cannot even sit in the recliner without being short of breath.
     Ironic as it is, whenever the cardiologist sees my husband it is after he has been sitting in the examining room resting for 30 minutes to an hour. To all who are going through the SSD process - hang in there and don't give up! Karen S. gstilley@hotmail.com


Kathy S, May 22, 2002 - Hi, I wanted to announce that my mother died May 15th, the day after I had written in. She had stood up to get out of her wheelchair to get into the car after dialysis and her hip broke. Her heart stopped during surgery.
     I want to let anyone know that if your in the Kansas City, Missouri area that Dr. Levi and his group at Menorah Hospital are wonderful as cardiologists. Dr. Stacey Morgan moms primary care doctor was also great, and the staff at the hospital too. The surgeons were very emotional at losing mom. She put up a great fight. She never gave in until the Lord decided it was time. I just wanted anyone looking for great doctors to know that these were wonderful. I cannot say enough. kcn0323@aol.com


Kathryn, May 24, 2002 - Hi, I haven't posted here in awhile but I check in here every so often. My son has had CHF for 3 years. His EF is now up to 47% and he's on all the usual meds. In the last 2 weeks he has had a recurrence of kidney stones. He had surgery for kidney stones 5 years ago and we thought he was finished with them.
     Now the general practice doctors are encouraging him to drink massive amounts of water to flush the kidney stones. With the fluid restrictions on CHF, that might be a problem. My question is, do the diuretics CHFers take aggravate the potential for someone to have kidney stones? Does anyone out there know? We will be contacting his cardiologist and asking the same questions and also about the water drinking. Maybe an increase in diuretic with the increase in water consumption? I just don't know. Thanks. kathryncole@hotmail.com


Anita S' May 24 reply to Kathy S' May 22, 2002 - Hi, I am sorry to hear about the loss of your mother. My thoughts and prayers are with you. Take care, Anita. dreamersila@netscape.net


Debrah, May 24, 2002 - Hi, What is CoQ10 and what is it for? deerwalk@earthlink.net


Jan's May 24 reply to Kathy S' May 22, 2002 - Hi Kathy, I am so sorry for the loss of your mom. It is hard when we lose a loved one, especially our mother. Know that you are in our thoughts and prayers at this trying time. hooty@ix.netcom.com


Derald G's May 24 reply to Kathy S' May 22, 2002 - Hi Kathy, My deepest sympathies. I'm glad you are both people of faith. She's gone home. deraldg@earthlink.net


Peggy's May 24 reply to Phyllis' May 16, 2002 - Hi Phyllis, My husband has also been in a-fib since February. Two weeks ago they put him on a drug called Tikosyn (dofetilide) and he has been doing great and feeling great with no side effects. Maybe he could try it. The only thing is that he would have to go into the hospital and be monitored for 3 days. Good luck, Peggy. RyoungAngora4683@aol.com


Kelly's May 25 reply to Kathy S' May 22, 2002 - Hi, I am sorry to hear of the loss of your mom. It sounds like she put up quite a fight. Remember all the good times and this will help you through. I am keeping you and your family in my thoughts and prayers. Also, it's good to hear that there are sensitive and caring doctors and nurses out there too. larkel@locl.net


Donna H's May 27 reply to Karen S' May 21, 2002 - Hi, My husband was also in law enforcement and his first doctor told him he could go back to work within 2 weeks of being discharged from the hospital. I asked the doctor if it would be dangerous if he were to be shot at while carrying his oxygen tank. The doctor gave me a strange look and then asked what his job consisted of. It turned out that my husband was approved for disability the first time around. It nearly didn't happen that way though, because the first diagnosis was CHF and SSA would not call that a disabling disease. When the office worker noticed the word ischemia in his diagnosis though, he was approved. Even after 2 years, my husband still misses his work and probably always will. herdrich@grm.net


Kathy S' May 29 reply to Debrah's May 24, 2002 - Hi, I wanted to respond to Debrah's question regarding CoQ10. I don't claim to be an expert on the subject but during mom's illness with CHF I read up and asked around. It is a natural enzyme that your body produces and as you grow older it can slow down in production. It helps keep muscle toned and acts as a antioxidant. It can also act as an energy enhancer.
     I asked mom's doctor a few years back about it, a different doctor than she had lately. She had not heard of it (scary). I checked with mom's pharmacist to see if it would clash with any of her meds and he told me no. She took it for awhile. She claimed it seemed to help her. There were others she took along with it. I believe some of them are listed in The Manual. I just always checked to be sure it did not interfere with her meds. There's a lot on the internet just by putting CoQ10 in a search engine, Kathy S. ksteen@midwesttrust.com


Kathy S, May 29, 2002 - Hi, I wanted to thank everyone for their thoughts and prayers. They are greatly appreciated, Kathy S. ksteen@midwesttrust.com


Roseanne S' May 29 reply to Sandy's May 14, 2002 - Hi Sandy, You are not alone. You know the old saying, when life hands you lemons make lemonade. Many of us are in the same position you are. My husband was 41 when he had his MI. He never took sick a day in his life before that. His MI was in February of 2001. He went downhill fast partly because he was trying so hard to get healthy and over exercising. He had to have an LVAD in July, followed by heart transplant in November.
     The only thing that saved us money-wise was that he has very good insurance. He returned to work in February of 2002, two weeks short of 3 months post-transplant. He insisted on returning to work that early although the doctor wanted at least 6 months post-transplant because he found out his union contract said if he returned in a year he could keep all his benefits at the level they were when he left.
     The grief you feel is normal. Depresson runs rampant among us loved ones, mostly I think because we have to put up a brave front when our world has fallen apart. In the space of a few seconds we go from having a partner to becoming a caregiver. We go from having few money problems to having major money problems, and so on; too many changes in a very short period of time, changes we did not ask for, did not want, and know we do not deserive.
     It is just as hard on us as it is on the one with heart problems. Support from loved ones and friends is wonderful and I thank God for all those who have helped me and understood when I was more than slightly crazy and overwhelmed, but the real support comes from people at this site, those who have walked in our shoes. So keep writting, asking questions, venting, and so on. It helps.
     Can you have a normal life? Yes. It won't ever be the same, but it will get better. If nothing else, you will learn to enjoy every day God gives you together. Things may not be turning out the way you planned, but as our minister said last week, if you are never disapointed you have never dreamed or hoped. Take care of yourself, Roseanne. rschurick@hillcrest-gcc.com


Millie, May 29, 2002 - Hi all, I just need to vent a little. I am very nervous today because Dave has to have his ICD unit tested on Thursday. He will have to be sedated and then as you all know, they will stimulate ventricular fibrillation and then shock him out of it. My concern is that they will not be able to shock him out of it. Maybe I am over reacting but it scares me!
     He is feeling very tired lately and moving a little slower than usual. I am hoping they will be able to tell us something tomorrow. It is hard to know what is normal behavior, whether he is actually just tired or if he is getting worse. Anyway, thanks for listening. I will let you all know the outcome. mandrews@choiceonemail.com


Kelly's May 30 reply to Millie's May 29, 2002 - Hi, My prayers and thoughts will be with Dave and you Thursday. I have never been through anything like this and I am sure I'd be scared to death. Best of luck and also I am praying you get answers to your questions. Keep us informed on what's happening and how he's doing. larkel@locl.net


Sandy, May 30, 2002 - Hi, Again, big thanks to all for the support through this maze of CHF and CAD! My hubby will have an echo near the end of June. Then we will learn if his EF has improved from 15%, if his left ventricle has decreased in size, and if his CABG is successful. He continues to do well. His Prinivil dose is now up to 20mg once a day, Coreg at 25mg twice a day, and Lanoxin at 0.125mg once a day. Still, he reports no side effects. Cardiac Rehab is about to boot him out of the program because he's doing so well. (to 5 METS).
     He's starting to try to do more things and is getting tired from doing more than he should. As for me, I'm finally sleeping 5 to 6 hours per night. I still find myself lying there listening to him breathe. It's been 2 months since diagnosis and CABG, and at first I could only sleep for about 2 hours at a time so I guess that is progress. Again, I can't begin to express the appreciation I have for all of you that have responded, and to Jon, for this site that has been a life line for me! :-) Sandy. sandy4014@aol.com


Karen S' May 30 reply to Donna H's May 27, 2002 - Hi Donna, What a great response to the doctor, saying that your husband could go back to work in 2 weeks! You must really have a quick mind. I only think of clever things to say after we leave the office. Thanks for making me smile, Karen S. gstilley@hotmail.com


Kelly's May 31 reply to Sandy's May 30, 2002 - Hi, It sounds like your hubby's doing very well. I hope things continue to improve for him. I can relate to him trying to do more than he should; mine's the same way. I guess if I was in the same situation I'd probably be the same way! Here's hoping both continue to improve. larkel@locl.net


Russ, May 31, 2002 - Hi, I am looking for a CHF specialist in Columbus Ohio. Can anyone give me a recommendation? Thanks. summers927@aol.com


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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