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

Barbara 11-1     seek advice about my daughter
Brenda S' 11-3 reply to Davida S' 10-27     update & thanks
David H's 11-3 reply to Barbara's 11-1     PPCM info
Maria 11-5     seek some advice about my husband
Jon's 11-5 reply to Maria's 11-5     for what it's worth
Maria's 11-5 reply to Jon's 11-5     weights and flying with CHF
Andrea J 11-8     head colds and heart transplant rejection
Rob 11-8     digoxin, Coreg, and cough question
Kim S 11-8     update, seek puppy advice
Jon's 11-8 reply to Kim S' 11-8     housebreaking a puppy
Gary W 11-13     learning about CHF
Pat M 11-14     blood tests, CoQ10 questions
Bill D's 11-14 reply to Pat M's 11-14     chest pains
Davida S' 11-14 reply to Pat M's 11-14     blood tests & eating, chest pains
Barbara 11-21     seek CHF doc in Long Island or New York City
Anita Silvey 11-21     questions about Phil's slipping CHF
Jon's 11-21 reply to Anita Silvey's 11-21     possibilities
Roseanne S 11-21     Charlie got a heart!
Sandy Harrison 11-22     could use some advice
Kim S' 11-22 reply to Sandy Harrison's 11-22     some advice
Bill D's 11-22 reply to Sandy Harrison's 11-22     doctors and meds
Sandy M's 11-22 reply to Bill D's 11-22     seek Wisconsin CHF doc, thanks & more
Maria 11-23     flying section helped
Toni 11-23     seek site with CHF info
Davida S' 11-24 reply to Sandy H's 11-23     you should see the doc sooner
Susan B's 11-24 reply to Sandy H's 11-22     denial, helping husbands & more
Suzy Coulter's 11-26 reply to Sandy H's 11-22     denial, helping husbands & more
Maria 11-28     has anyone read "Raising Lazarus"?
Karen S' 11-29 reply to Barbara's 11-21     cardiologists, getting the info you need
Brenda 11-29     update, prayer request, get a second opinion

Barbara, November 1, 2001 - Hi, I am worried about my daughter. Her last echo was in January of 2001 and her EF was 40%, up from 15 to 20% when diagnosed in November of 2000. She does feel stronger these days but lately she is dizzy when standing and she was sick with bronchitis. Even though she has taken the antibiotic she is coughing up a dark colored mucus. She takes Altace, digoxin (Lanoxin) and Coreg. She is about 95 lbs and has been exercising. Any of your thoughts would be helpful.

Brenda's November 3 reply to Davida S' October 27, 2001 - Hi, Thank you (and Jon) for your concerned comments and encouragement! Mom is going to see another CHF specialist next week. She pondered long enough about it that dad, along with my help and yours from the CHF specialist list, made her an appointment. I have to say her first reaction was not a pleasant one but I hope she will see that we have her best interest at hand, although we are not trying to run her life. She said she wanted to seek a new CHF doc and we just helped her along. We love her, you know.
     Ten weeks here in Texas down from Illinois and I make my decision today if I'll stay another day. Dad asked me tonight, how long are you staying? You know you need to go home sometime. It was hard not to cry. He thanked me for being here. I thank God for being able to be here because I haven't always been able to be home much; and my children, especially my very shy 6 year-old daughter, have seen them more during this visit than in her whole life. She still has her moments but her and her grandparents are having some great times together.
     You are right about talking with the doctor. Before I came down, I called and spoke to them about an x-ray which mom had been waiting for the results about. No news isn't necessarily good news. Who would keep a heart patient wondering about a test? She called shortly after our conversation. Mom soon put 2 and 2 together. She wasn't mad I'd called. I do go to the doctor visits with her and I sit in on them. That's part of my concern of being here. She may not always have someone go with her and it's important to get the facts straight.
     Davida, it's good to hear your husband is doing well. Be careful about discontinuing his meds. Didn't Jon say something about CHFers always needing certain meds for life? Thanks and God bless ya'll.

David H's November 3 reply to Barbara's November 1, 2001 - Hi Barbara, Does your daughter suffer from PPCM (peripartum cardiomyopathy)? I did not see anything in a previous post about it. If that is the case, she may want to check out this site: It is for women and family of PPCM. It is very new, has only been up about a month now but they may also have some answers for you. I wish I could offer you more, but that is all I have for now, Dave.

Maria, November 5, 2001 - Hi, My husband's heart condition was caused by a piece of concrete that came through our car windshild and caused a blunt trauma to his chest. I was driving and he was in the passenger seat asleep. He is 45 years old. He had open heart surgery in october of 2000 and has a new tricupsid valve. The left side of his heart was badly damaged. He has an anuyerism that could not be resected because of the scar tissue. His EF went from 20% after the accident to 57% the last time he had an echo. He is back to work at a new, less strenous job. He is exercising but doesn't really watch what he is eating. He is also back to lifting weights. Is this a good idea? Does anyone have any coping advice for me? I want to start traveling again. Our favorite place is Hawaii and we live in Massachusetts. How safe is it for someone with such a damaged heart to fly? He does drive. I've learned a lot from this site. Any advice would be greatly appreciated.

Jon's November 5 reply to Maria's November 5, 2001 - Hi Maria, It's okay to lift weights for many CHFers as long as they don't get carried away with it. My own CHF doc says I can lift as long as I don't use a barbell. In effect, he is saying, don't lift too heavy! I would like to point out that I know little about aneurysms but I would think lifting is a terrible idea for someone with an aneurysm, and I mean a terrible idea. I would run this by his doctor immediately. Jon.

Maria's November 5 reply to Jon's November 5, 2001 - Hi, Thanks Jon. The aneurysm is encased in scar tissue and the docs said it will just "sit there." He did ask the doc at his checkup last week about weight work. I think he was told not to go too heavy. He is doing pec work on a machine and uses dumbells for biceps. I agree that the weight should not be too heavy. Try telling that to someone who is used to moving a lot of weight and unloading tractor trailers full of groceries. Thanks again. Any thoughts on the flying issue? Maria.
Jon's note: Click the link I put in your previous post this morning on the words "to fly"

Andrea J, November 8, 2001 - Hello all, I hope this post finds you all well. My question concerns post heart transplant. Mom had her heart transplant in January and after some early scares with liver failure related to meds, has been doing well. Now she's gotten her first head cold - bound to happen sooner or later. At any rate, she went in for her monthly biopsy and her rejection factor came back at 3A, where she has been 1A and 1B since the transplant (the scale goes from 1 to 5). Obviously I'm worried. Can anyone offer advice on this? I personally think that the numbers are being thrown off by the increased white blood cell count from her head cold, but that's just me and I'm not a doctor. Thanks for your prayers and well wishes. Love and prayers to all.
Jon's note: Just 2 days ago, I had a recent heart recipient say that a head cold raised their rejection 2 grades. They are on IV steroids now.

Rob, November 8, 2001 - Hi, My wife is 42 and was diagnosed with CHF about 3 years ago. She's been on the standard medications, including Coreg, digoxin (Lanoxin), and diuretics. Recently an exam showed that her EF has improved significantly and her heart has remodeled itself to nearly normal size. Good news! At that time, her doctor took her off digoxin. The next day she developed a dry cough. This seems to be the same cough that she had for a short time when she first started Coreg. Her doctor claims the onset of the cough is entirely coincidental to the cessation of digoxin. It seems a bit too much of a coincidence to me. Does anyone have a similar experience? Thanks, Rob.

Kim S, November 8, 2001 - Hi ya'll, I'm still staying at Mom's but found access to a computer! Thanks so much for all the suggestions. We've had success with several recipes and have found low-sodium snacks, bread, and baking powder. If anyone's interested, feel free to e-mail me. It sounds like lots of people besides me are trying to offer long-distance support to their relatives with CHF. Has anyone had any luck talking their family members into moving closer to them? Mom's having a tough time accepting that this has happened, and that it's not going to just get better and go away. Also, following Jon's Place advice to the letter, we got a puppy! Unfortunately, I had no idea how much work housebreaking and caring for a new puppy is. I'm worried that after I return home to Texas, Mom's not going to be able to physically handle the 2:00 AM potty breaks. So I'm asking for more advice! Thanks everybody, Kim.

Jon's November 8 reply to Kim S' November 8, 2001 - Hi Kim, If you are absolutely strict with the program and never - not even once - get lenient with the puppy, housebreaking is amazingly quick. Carry the puppy from its crate to the yard so it doesn't even have a chance to make a mistake. By 12 weeks, they can hold it all night while sleeping in their crate, assuming you got it at 8 weeks and immediately started housebreaking it. Jon.

Gary W, November 13, 2001 - Hi, I want to thank everyone for your posts. I just started reading about everybody and have gained a lot of knowledge and a firmer idea of what I have to face. I will have many questions in the future but right now I'm just taking in everyone's experience and trying to learn. God bless.

Pat M, November 14, 2001 - Hi you guys, My husband is 48 years old and has CHF. We are in an HMO and the cardiologist was doing more to kill him than to help him, so he refuses to see the only cardiologist available. He gave him 3 months to live without a transplant a year and a half ago, so maybe Nathan was right to not go to the man anymore. I had his primary doctor put him on Coreg, which really seems to have helped.
     My problem is that I'm having a devil of a time getting Nathan to go for the blood tests for magnesium levels. They tell him he has to fast, but he has to take his meds in the morning and has to eat something with them. Any thoughts? I want to tell him to eat something, take his meds and then whip him over to the lab and have them draw right away. Any suggestions? He's avoiding the doctor, which is not good, because he's not getting the blood testing and I'm plain ripping my hair out.
     Also, that co-enzyme stuff, he says when he takes it he feels chest pains. Does anyone else have that problem? Pat.

Bill D's November 14 reply to Pat M's November 14, 2001 - Hi, Most of us take nitroglycerin for angina pains. They are little tablets dissolve under your tongue. When it gets bad I have transdermal patches on my arm. I didn't know that CoQ10 was good for that. Bill D.

Davida S' November 14 reply to Pat M's November 14, 2001 - Hi Pat, Regarding fasting and blood tests, request the first appointment of the day, which may be around 8:00 to 9:00 AM. Get there a few minutes early. Bring a snack and small bottle of water and he can take his meds immediately after the blood is drawn. He may be off an hour or so depending on how early he usually takes it but if he brings it with him it won't be any big deal.
     Could the chest pains be gas or indigestion? Has he tried eating with the coezyme Q10. My husband takes all meds with foods because his stomach is so sensitive. Most coenzymes have vitamin E and it's supposed to be good for heart function.

Barbara, November 21, 2001 - Hi, My dad was diagnosed with CHF six weeks ago, which happened 4 weeks after he had triple bypass surgery and 5 weeks after he had a heart attack. Jon, your web site has really helped me understand his condition and is useful for educating him and my mom about things to do and not do.
     I am concerned that my dad's cardiologist is not providing him with enough information and not educating him about his disease. I very much would like my dad to go to a CHF specialist. Does anyone know of one that is located either on Long Island, New York, or New York City? Any help is greatly appreciated. My parents live on Long Island and I am looking for a CHF specialist. Thanks, Barbara.

Anita Silvey, November 21, 2001 - Hi, I have a question for you experts on the forum. Philip - my husband - went to the VA clinic with coughing and shortness of breath. He is spitting up mucus. They took x-rays and decided it wasn't pneumonia. They said it was exacerbation of his CHF and that his lungs were tired and just acting up. I guess they put it in terms they thought we could understand.
     They put him on steroids and an antibiotic for 10 days and said if he got worse to go to the emergency room. We will probably do that anyway but I wanted to know if any of you had ever heard of that diagnosis. Maybe it is just that his CHF is getting worse. Please let me know what you think. I value your opinion. Thanks.

Jon's November 21 reply to Anita Silvey's November 21, 2001 - Hi Anita, I'm sorry to hear Phil isn't doing so well. He's been a Jon's Place reader for a very long time. I would get him to his regular cardiologist. Steroids are a risky therapy for CHFers because they can increase the body's tendency to retain fluid, including in the lungs. The fact that they put him on an antibiotic means they probably do think he has pneumonia. I would be looking for some meds juggling with Phil's CHF doc, at least temporarily, to see if his CHF can be returned to his earlier plateau (level). Jon.

Roseanne S, November 21, 2001 - Hi, Charlie got his heart transplant on November 15th. We got home on November 20th. Thanks everyone, for their prayers, Roseanne.

Sandy Harrison, November 22, 2001 - Hi, I am really glad to have found this web site. My husband was diagnosed with cardiomyopathy 3 years ago. His echocardiogram showed an EF of 25% with an enlarged left ventricle. He was put on 40mg furosemide and 5mg prinivil. They raised him to 40mg prinivil and did another echo after 6 months. There were no marked improvements so they sent him to a cardiologist who stated that at the current time that there was nothing further to be done but monitor him.
     Recently they did the regular 6 month bloodwork (he is also type 2 diabetic) along with another echo. His bloodwork showed high cholesterol so they put him on 40mg Lescol. The echo showed an EF of 20% so they also put him on 25mg tablets Toprol-XL but only half tablets, which the pharmacist said is the lowest dose.
     I am worried, mostly because of the unknown, I am sure but the doctor told him to make an appointment in 2 weeks and then from there he wants to have him see the cardiologist again. He also sent him to a class at the local hospital on living with CHF, although that word hasn't been used by the doctor in relation to his condition yet. Besides his heart problem and the diabetes, he is on medication for his stomach and chronic sinus problems. My husband, not particularly liking doctors, is not happy with all the medication and I don't think takes his problem seriously. That is where I come in.
     I think maybe I overreact because he underreacts. I am constantly asking him if he feels okay and look for symptoms he may have that could be caused by his medical condition. He has recently started having difficulties breathing again. I take extra big breaths just listening to him. It isn't the same as his original problems where he felt that his lungs were full (all the fluid retention) but he will do a simple task and then take a big breath and blow it out, but it seems to take such effort. He thinks he has a lung condition and doesn't believe it is related to the cardiomyopathy.
     Since our doc appointment isn't until December 11, can anyone tell me if this is normal? He previously has not let me come with him to the doctor, but this time I insisted because I need to know and ask questions he may forget to ask (has a terrible memory of late also). He may not be willing to change life style but I need to know how to help him (subtly change things) or at least deal with life as it continues and his body continues to change. Any friendly advice would be appreciated.
     Thanks for letting me rattle on. I needed to talk to someone who can understand what it is like to be concerned and maybe not able to help.

Kim S' November 22 reply to Sandy Harrison's November 22, 2001 - Hi Sandy, your comment about "overreacting" because your husband may be underreacting struck a chord with me. I've had the same concern about being too much of a mother hen with my mom. However, learning about CHF (and all your husband's other medical problems) is a lot to take in and I think we have to do what we can to offer support - whether or not it seems appreciated at the time.
     When I went with mom to her cardiologist and other appointments, they seemed happy to see a family member with her. I think most medical people understand that when we're hearing bad news or trying to learn about new life style adjustments it's hard to understand it all, remember all your questions, and remember their answers. Maybe you could explain to your husband that you want to attend his appointments because it will help you worry less if you have more information. Write down all your questions as you think of them, and write down the doctor's answers so you'll have them later.
     If the doctor doesn't want to answer your questions and says there's nothing else that can be done, it might be time to look for a new doctor. Regarding the appointment time, a lot of doctors are so busy and overbooked that you have to wait to get in to see them. If symptoms get worse in the meantime, you can always go to the ER. Best of luck to you and your husband, Kim.
     PS. Thanks Jon, for the puppy advice. He's pretty much housebroken but still a lot of work for Mom. Happy Thanksgiving everyone!
Jon's note: Please note that my advice is to "get a dog" (in The Manual) - not necessarily a puppy!

Bill D's November 22 reply to Sandy Harrison's November 22, 2001 - Hi Sandy, Welcome to Jon's Place. The doc you're going to is a regular cardiologist, right? I think you and your husband should be going to a CHF specialist. He was wrong to start 5mg of Prinivil. I've not heard of any doctor keeping you out when he treats your husband either! Bill D.

Sandy H's November 23 reply to Bill D's November 22, 2001 - Hi, Thanks to Kim and Bill for their replies. Bill, I do not know if the cardiologist is a specialist with CHF. I have looked on Jon's site and do not see a CHF specialist in Wisconsin. We have Dean insurance so we have to see their doctors. I am going to check with our family practioner, who will be scheduling my husband's appointment if any of the Dean cardiovascular doctors specialize in CHF. It would be nice if a different one is because my husband does not like the doc his PCP is sending him to. He is very arrogant, even though my boss tells me he is known as the best in his field. If you don't like the doctor, sometimes you fight a losing battle. I am writing down all my questions so that I go in prepared because I don't want to end up possibly getting flustered and forgetting anything.
     Right now the guys went deer hunting and as my hubby leaves the house he is complaining about his breathing. Even though I know he can go to the ER, he is a stubborn one and prefers to complain. I am anxiously awaiting the December 11 appointment and say a prayer for him every night. I hope everyone had a wonderful Thanksgiving and thanks to those who listen!

Maria, November 23, 2001 - Hi Jon, Thanks. I saw the section on flying and it was very helpful, Maria.

Toni, November 23, 2001 - Hi, This was my first visit to this site and I have found a number of people talking about the same symptoms and concerns I have. My husband has CHF and it is hard to find sites and real people to talk and listen to. As a spouse of a CHF patient I am often worried about him and I try to find as much news and info about CHF on the Internet. They are few and far between. Most info is generalized and repetitive. Does anyone know a site to go to for the most up to date information on CHF? We are getting desperate because even though my husband has an ICD implant he seems to be getting more and more tired all the time. Thank you.

Davida S' November 24 reply to Sandy H's November 23, 2001 - Hi Sandy, You do not have to wait until December 11. Call the doctor's office as soon as it opens up, no later. Some doctors set time aside each day for unexpected emergencies and combined with a cancellation or no show, you could have the 15 minutes he set aside, but you have to call first thing. I have never been turned down when I call at 8:00 AM when the office opens up. If I call at 9:00 AM, I go on standby for a cancellation or am told to go to the ER. You may also see other doctors in his practice if he is unavailable and the insurance will still pay. Your husband's chart is in the office and any physician in there should be able to assist. Shortness of breath is not good and very taxing on the heart. I was afraid my husband was gonna have a heart attack because his heart was so oxegen-starved. I can't stress enough that shortness of breath is one of the loudest warning bells that goes off with CHF patients and whatever is causing it should be brought under control immediately. Two weeks is too long for this to fester. I wish we had gone 2 weeks sooner instead of waiting for the next appointment. It almost cost my husband his life - waiting gave him a 3 1/2 week stay in Club Med.

Susan B's November 24 reply to Sandy H's November 22, 2001 - Dear Sandy, My husband believes that all of life is fine and wonderful. I have to do all the worrying for both of us. I have to go to all of the doctor appointments and I stay will him for most of the tests. Why? Because he generalizes and tells me that he is well - even when his oxygen was at 81%. I took matters into my own hands. I go to the doctor appointments, I call the insurance company, and I read this site almost every day. It is for him and also for me.
     CHF requires work and planning. Remembering all the medicines is hard for anyone but that is just the beginning of what you can do to help. The links at this site are also helpful. I love the weight chart and I got my husband to use it. He is much better - because I pushed and asked questions and learned all I could. He hates taking the drugs but he wants to be as well as he can.
     Learn all you can. You need to share information with the doctor. My husband forgets to tell everything to the doctor. We work on the lists together now. Maybe this will not work for you but it works for us. Maybe you are reacting to the lack of information. The unknown is much worst than reality. Your husband may just be living in the world of denial. My husband is quite happy to live there. As long as he takes his medicine, does his rehab, and follows the doctor's instructions I'm letting him live there. I have tried to reason with him but he doesn't want reason, he wants to believe everything is fine. He is doing much better so maybe living in denial is not a bad as it appears at first. Maybe your husband wants to live there as well. Good luck, Susan.

Suzy Coulter's 11-26 reply to Sandy H's November 22, 2001 - Happy Thanksgiving to all, I hope you're all stuffed and no one had too much salt! Sandy, boy, have I been there?! My husband, like most guys, lives in the land of "I'm a guy, so it's no big deal." I married my CHFer for better or worse 40 years ago. When he got cancer I was the one who dragged him to the doctor. When he got CHF I was the one who dragged him to the doctor. His docs know I will be at every single visit, test, rehab and anything else. We went to the lung specialist recently and my husband wouldn't answer when asked if he had gained weight. He wants the doc to think, well I don't know what he wants the to doc to think! I spoke up and said his feet and legs are swollen again. He was sent for a new echo, put back on Lasix, and sent to the cardiologist again. Between the two docs they are very glad I am there. They know my husband won't tell them anything. He just wants to will himself well again. So don't get too frustrated.
     My husband didn't want me tagging along in the beginning, 14 years ago but he got used to it, and now since he can't drive much, he's glad I'm there, although he won't admit it yet. He actually did thank me for ordering a wheelchair in the airport for a trip we took. Boy, they're stubborn, aren't they? Hang in there. He knows you're trying to help. Have a great holiday season. Special blessings to you Jon, and your family, Suzy.

Maria, November 28, 2001 - Hi, Has anyone read "Raising Lazarus"? It is an amazing story of a man named Robert Pensack who had hypertrophic cardiomyopathy (HCM) and ultimately a heart transplant. The book was published in 1994. I wonder if anyone knows anything about him. He dealt with a lot of issues my husband has experienced with trauma and PTSD. Thanks, Maria.

Karen S' November 29 reply to Barbara's November 21, 2001 - Hi Barbara, You are not alone with regard to your concerns that your dad's cardiologist is not providing him with enough information about his CHF. We are on our second cardiologist since January and neither has given us much information.
     The knowledge I have gained from this site, Dr. Silver's book and other sites and publications far outweighs anything I've heard from any doctor. We are often met by blank stares when we relay to the cardiologist problems my husband is having. My husband has been relieved more than once to find out that other people with CHF are experiencing symptoms like his.
     We have also been told by a cardiologist things that we now know are wrong, for example: "You can't be retaining fluid in your abdomen if your ankles aren't swollen." I really believe that a heart failure specialist is the way to go if that is possible for your dad. I have recently reread information which I read early on in my CHF education and picked up on information that I didn't understand the first time around. Sincerely, Karen.

Brenda, November 29, 2001 - Hi, My mom Jan, is in ICU after surgery. She's been there since November 21. They replaced the flaps on her aortic valve and repaired her mitral valve and repaired a bypass done 14 years ago. The surgery was a success but her recovery is taking awhile and seems it will take awhile longer. They are trying to remove fluid around the lungs. Also, she pulled out the ventilator tube and went a few days without it but they had to put it back in.
     She is so anxious and that causes her heart rate to rise and her oxygen level to drop. They have her very sedated now so she'll rest and this helps her heart but may be a long recovery for her lungs. The lung/breathing problem is due to COPD, they say. This evening I was told there was blood in her urine. I'm waiting to hear about that.
     Mom has been very ill these past 3 months. She finally visited a CHF specialist found on Jon's site and we're thankful for that info. What concerns me is that she said the aortic valve was a birth defect and it wasn't mentiond by the previous cardio doc in the 14 years he was treating her. It pays to have a second opinion by doctors not affiliated with each other! I just wish I'd found this site earlier. The doc said her treatment of Coreg wasn't working because of the valve problems.
     My mon always said she wouldn't have open heart surgery again. I'm very glad she had the surgery. It was high risk. Although at the time I wasn't thinking she wouldn't survive, I was thinking it wouldn't be successful and she would remain very sick. I found out yesterday just how high-risk the surgery was when the doctor told mom she had made it through the worst part because she (the doc) didn't expect her to make it through the surgery.
     I'm concerned for the blood in her urine and her breathing problems. Please remember her and dad in your prayers, and my 3 brothers and myself. Thank you.

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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