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

Karen O 7-2     thanks, update
Roseanne S' 7-2 reply to Susan B's 6-30     husbands in denial
Roseanne S 7-2     update on Charles
Kat R 7-2     pain in arm before bed - anyone else?
Kat R 7-2     chest pains and can't lose weight
Peggy's 7-2 reply to Lucy's 6-25     heart meds and diarrhea
Stacy W's 7-3 reply to Roseanne S' 7-2     my mom sounds like that & more
Susan B's 7-3 reply to Roseanne S' 7-2     thanks, support groups
Roseanne S' 7-4 reply to Kat R's 7-2     arms reacting differently & more
Barbara 7-5     Disability
Cindy Horner 7-7     how do we help dad without him feeling small?
Roseanne S 7-9     update, very difficult situation
Roseanne S' 7-9 reply to Cindy Horner's 7-7      coping, helping & more
Kathy S 7-10     I don't know where to start
Jon's 7-10 reply to Kathy S' 7-10     just jump in
Kathy S 7-10     having read more, more info
Hannah 7-10     husband's lung and heart problems
Jon's 7-10 reply to Hannah's 7-10     some possibilities
Susan B 7-10     book suggestion, venting
Roseanne S 7-11     update, frustration
Jon's 7-11 reply to Roseanne S' 7-11     quality of care
Kat R 7-12     does anyone know about time-release nitroglycerin?
Connie M 7-12     Lee Braden lost her husband
Lori 7-12     need help understanding my dad's condition
Tae 7-13     seek transplant doc in Louisiana
Cathy R 7-13     is my husband going to die soon? & more
Susan B's 7-13 reply to Cathy R's 7-13     tips on coping & more
Karen D's 7-13 reply to Cathy R's 7-13     coping with CHF experience
Paula 7-13     questions about my young CHFer son
Jon's 7-13 reply to Paula's 7-13     that 5-year death statistic
Roseanne S 7-16     update on Charles
Gabi 7-16     seek SSD lawyer in Dallas, Texas
Karen D's 7-16 reply to Roseanne S' 7-16     transplant evaluation results
Sharon B 7-19     seek others experiences
Diana 7-20     what to ask? questions about my son
Melanie 7-24     how do I cope with smoking husband?
Stacy W 7-24     weight loss, end-stage illness & more
Pam A's 7-25 reply to Stacy W's 7-24     weight loss & severe illness
Roseanne S' 7-25 reply to Melanie's 7-24     spouses who smoke
Roseanne S' 7-25 reply to Melanie's 7-24     addition
Judy H 7-26     concerned about edema in feet
Roseanne S 7-26     question everything
Stacey W's 7-31 reply to Pam A's 7-25     oxygen smell, losing weight, update
Jon's 7-31 reply to Stacey W's 7-31     oxygen smell, losing weight 
Roseanne S' 7-31 reply to Susan B's 7-10     thank you for book suggestion 
Carol C's 7-31 reply to Roseanne S' 7-26     also at Jewish & more

Karen O, July 2, 2001 - Hi and thank you Jon for this site and for answering my post, Thank you Lee, for where I could get more information at Jon's Place. My surgery was a success, no problem at all. I was up walking around about 2 1/2 hours later. I went home the next day and I have more energy than ever. The reason probably is that my pacer is set at 60 instead of 50, so I'm not as tired. Sorry to be babbling like this. Everyone take care and have a safe and happy fourth of July, Karen O.

Roseanne S' July 2 reply to Susan B's June 30, 2001 - Hi Susan, Isn't denial a wonderful thing? I am in the same boat. My husband has an EF of 19% and dangerously low blood pressure, but is convinced he will be able to return to work in a gravel pit, walking up and down 12 flights of stairs at least twice a day. He has had no imporvement in heart function since his heart attack in February.
     He is also convinced that he will get better and not need transplant if he just exercises more. In addition, his entire family (7 siblings, 2 sons, and a mother all live less than an hour away) is in denial. They do not come to see him or even call. Whenever I try to tell them how really bad this is, they all tell me, "That's what I thought."
     You have to have a CHF doctor. You truly have no choice. Regular heart doctors and primary care doctors just aren't the same. Even when they tell you they take care of a lot of CHFers with EF of 19% or less. Just hang in there and remember that tomorrow will be be a better day, Roseanne S.

Roseanne S, July 2, 2001 - Hi, My husband Charles is still in the hospital. He is being treated by the Heart Failure Clinic doctors at University Hospital in Cincinnati. He was on a dobutamine drip for 5 days after his blood pressure bottomed out from captropril and Lasix. They lowered his captopril from 12.5mg to 6.25mg but he was still bottoming out. They changed him to a milrinone drip but he still bottomed out. They have stopped the captopril and changed him to Lopressor. I checked twice to see if it really was Lopressor after reading your post. He was given 1/4 of a "regular" dose of metoprolol and could not tolerate it. He can't tolerate even half of the minimum dose of Coreg. Roseanne S.
Jon's note: What's his heart rate?

Kat R, July 2, 2001 - Hi, My significant other has been doing well since I posted about a year ago. He has been having trouble lately with pain in his left arm at night just before bed. He is working and in his mid 50s. He has congestive heart failure but has done well with maintaining his weight. He also has type 2 diabetes.
     Has anyone else experienced this or have any suggestions about what could be happening? He seems to be pain-free throughout the day; It is just in the evenings when he is ready to retire. Thanks for your help, Kat.

Kat R, July 2, 2001 - Hi, My 80 year old dad also had bypass about 4 years ago. He did well and everything seemed fine but he has gained a lot of weight. He is diabetic and insulin dependent. He used to walk at least daily from one end of town to the other but now he walks daily but not that far. He watches his diet, but is not losing weight. The doctors have put him on a diuretic but it doesn't seem to be doing much.
     Also, since his surgery he complains of some discomfort in his chest and he is losing some of his sight. His eyes supposedly check out fine and they can find no reason for this. I would love to find out why he is not losing weight and what can be suggested for the chest pains. He has always been very active for his age but now he just sleeps a lot (from necessity). Any ideas would be great, Kat R.

Peggy's July 2 reply to Lucy's June 25, 2001 - Hi Lucy, My husband is on a lot of heart medications for cardiomyopathy and he was experiencing a lot of diarrhea. Instead of taking all his pills at the same time in the morning and at night, we had him taking them at different times with about an hour in between each. That seemed to work for him. Good luck!

Stacy W's July 3 reply to Roseanne S' July 2, 2001 - Hi, My mom sounds like she is in a similar situation. She is older and the doctors keep telling her if she were 30 to 40 years younger, she would be a perfect transplant candidate. She is on dobutamine for her BP. They almost had her off it but she had such a large amount of fluid in her lungs that when they tapered her, her BP dropped more. Then they withheld her Lasix, the fluid built up again and they had to give IV Lasix, and she bottomed out again. She is on oxygen due to her pulse oximetry being in the 70s without it. Does anyone know if this is usual? With the oxygen she is in the 90s.
     Today, her defibrillator fired twice. They think the first firing was due to a run of V-tach. The other, they don't know! We are heading to Florida tomorrow. We are looking for more answers and are concerned about the direction my mom is heading. We remain hopeful for a turnaround but are ready for whatever is there. It is so hard not knowing what to expect, and if there is more that could be done. Thanks, Stacy.

Susan B's July 3 reply to Roseanne S' July 2, 2001 - Hi Roseanne, Thank you for your reply. This is a good place to vent. I am sorry about your husband's family's lack of support. I am very lucky. My mother-in-law goes with us to the doctor appointments. My family is also supportive. One of my best friends from college lives arround the block from us and also helps us. My husband is not up to doing everything he did before and it is nice to have friends. My cousin just lost her husband and we talk long-distance about living and coping with an ongoing illness. Are there support groups in your city for your husband? My husband has been talking to other people and it really helps him. Good luck, Susan.

Roseanne S' July 4 reply to Kat R's July 2, 2001 - Hi Kat, My husband has severe numbness in his left arm, which gets so bad at times they can't draw blood out of that arm. The blood pressure in that arm can be up to 20 points lower than in his right arm. The doctors say there is no reason for it and that he is not going to have another heart attack. He notices it most if he raises his arm above his heart, but it can start at any time. Good luck finding answers.
     Jon, Charles' heart rate is 101 to 120 at all times, even when he is sleeping. They changed his Lopressor back to capotril at 3.12mg yesterday, stopped the milrinone, held the Lasix, and lowered his potassium. His blood pressure was 68 over 41 this morning. Roseanne S.
Jon's note: I'm just wondering if a pacemaker would help. By the way, there is a reason for the arm thing. His doctors just don't know what it is, and that means they don't know if it is potentially dangerous or not. I'd recommend a second and third opinion

Barbara, July 5, 2001 - Hi, Just a word of encouragement for all those who have been denied Social Security Disability. My daughter was denied for SSI and disabled adult child status last week. I wrote the Congressmen in her area and one of them called her as soon as he received the letter. The Ccongressman said he thought he could help her. I was just pleased that he took the time to make it personal. We may not have won the battle but I think we will win the war!

Cindy Horner, July 7, 2001 - Hi, My father was recently diagnosed with CHF. We almost lost him 3 weeks ago after his first bout with pulmonary edema. His heart is now functioning at only 24%. Dad worked full-time up until the day before.
     How do we care for him and help him, while at the same time not make him feel like an invalid? He has always been very proud and self sufficient, while now he seems to have lost all confidence in himself.

Roseanne S, July 9, 2001 - Hi Jon, Thanks for the arm numbness kick in the rear. I should have figured that out months ago. They are going to do an cath to check it out, just to be sure there is no blockage and that the stent did not shift. The CHF doctor said the PCP and cardioligst should not have ruled out any new blockage without the test since things change. They also did vascular studies on his arms and legs. The biggest problem with getting tests is that he is in Cincinnati and they can't do any tests that could be considered transplant-related because they are only authorized by the insurance company for treatment of CHF. If they don't find any blockage he will be transferred to Jewish Hospital in Louisville.
     Charles is back on a milrinone drip. If he is on it he can take small doses of his heart meds but if they take him off it he can't tolerate any of them. If they find blockage they will try again to get him off the drip and let me take him home for a little while before going to Louisville.
     How long can he stay on this drip? I was told he could not stay on dobutamine long-term because it would wear out his heart. Another problem is that the IV sites are only lasting about 24 hours, then they start to leak. We also had a very bad experience with an echo tech. For some reason the tech decided she needed to talk to him while she was doing the test. I was not there (I won't make that mistake again). He came back so depressed, saying she was like talking to the grim reaper. She told him he would have to be at death's door to get a heart and there was no reason to put him through these or any other tests since she has never seen anyone get better, and that exercise and meds don't change anything; He would just be put on the list and sent home to die. I reported her to the CHF team. Unfortunately, the damage has been done and nothing the doctors or I say is getting through to him. Thanks for listening, Roseanne S.

Roseanne S' July 9 reply to Cindy Horner's July 7, 2001 - Hi Cindy, Hang in there, it will work out. Remember that tomorrow will be a better day. My husband was the same way: never sick a day in his life until his MI, always took care of everyone else in his family. We also went through a similar thing with my father, both when he had CHF and later with bladder cancer. As your father finds out what he can and cannot do, he will allow you to help.
     Let him do what he can for himself, but if you see that he needs help, just do it; don't make a big deal about it. My husband was thrilled the first time he could stand up to pee! Of course being a woman, I don't get it. <lol> Sometimes you have to ask if he needs help but wait until he tries. The more things he can do for himself the better off you will all be. He will get mad. Just remember that it is not you he is mad at, it is the CHF and himself. Sometimes you will have to just sit back and wait for him to figure out that he needs help. He will have some bad days before he gets it all figured out.
     My husband tried to do a load of laundry and insisted he could do it. He cried when he couldn't do it but a couple of weeks later he tried again and he could load the washer. He could not take the clothes out but at least he felt like he was helping me. Little things will become major victories for all of you. Again, don't make a big deal out of it; just remind him that a week ago he could not do it and now he can. He will overdo it but he will learn. Also, read the old posts both here and in the other section - they help a lot!
     On a happier note, my father had CHF with an EF of 25%. We came very close to losing him the first time he went into acute heart failure. He had a valve that was damaged due to rheumatic fever as a child and the valve worked until he was 65, then decided not to open. They pushed the valve open via balloon. He had to take Lasix and digoxin (Lanoxin) the rest of his life but he was still able to travel around the world distributing eyeglasses for the Lion's Club until cancer took him. He traveled to 13 different third world countries 67 times in the 10 years after his CHF was diagnosed. He was also able to visit Alaska and wintered in Texas.
     I did not live near him at the time and did not know anything about CHF. He was very good at not sharing information and hiding things, so none of us knew much about his condition until cancer changed things. Now that I know more about CHF I am amaized at what he was able to do. You never know what the future will bring. This is all probably new to you and you will become an expert in a lot to things you never wanted to learn in a short time. I can work all of the monitors in 4 hopsitals and one ER. In fact, at one hospital they changed the monitor system and every time the shift changed I ended up teaching various doctors and nurses how to use them.
     I also make sure I know what his "alarm values" are [Jon's note - these are often called panic values]. I have kept nurses and interns from panicking at low blood pressure readings, have corrected med doseages, enforced med hold instructions and so on. I just tell them to check his charts. I have been amazed at the number of times the nurses will come back in, tell me I am right and thank me or bring the doctors instructions in for me to read if they have been changed.
     One final note: Read The Manual, especially the part about memory. I constantly have to deal with, "When did they say that?" and "How come you know that and I don't?" Good luck and God be with you, Roseanne S.

Kathy S, July 10, 2001 - Hi, This is my first time at this web site. My Mother has CHF. She was diagnosed in 1997 after she collapsed during a walk with my sister. She also happens to be diabetic. She is very weak at this point but continues to try to care for herself and a son who is mentally handicapped. I try to see to them both 4 times a week. I've read up on this illness and have so many questions and concerns - I don't know where to begin.

Jon's July 10 reply to Kathy S's July 10, 2001 - Hi Kathy, Just jump in. You have to start somewhere. You can read this page for a jump on my site's information. Jon.

Kathy S, July 10, 2001 - Hi, I wrote earlier and as I was looking through the other messages, I noticed the suggestion to read The Manual. So I did and it is very informative. My mother went to the doctor last week and was told she was in heart failure. I wasn't sure what that meant since I knew she was diagnosed but the signs are all there. She has been struggling the past few months to keep the water off. She has slowed down so much even from last fall. She is unable to walk anywhere without being out of breath. I talked her into using the electric scooters at the grocery stores and at Walmart.
     She wants to get out of the house, which I understand, but I hate it when she drives. She doesn't seem to want to know how dire her circumstances are. The doctor has given her 6 months but she is not aware of it. I don't believe she wants to know. As I have stated, she has a lot of complications, being a diabetic also, and she has colon cancer. She has been complaining of shoulder pain and it sounds pretty painful. I have bought her CoQ10, vitamin C and E, flaxseed oil and L-carnitine. She is on lots of meds and I'm feeling very sad tonight.

Hanna, July 10, 2001 - Hi Jon, I notice that The Manual does not list COPD as a cause of CHF. My husband has what is now classed as severe emphyzema but his first hospitalization was for heart and lung failure. At least, that is what the doctors called it. That was 6 years ago.
     Since he has been on diuretics, the past 6 months or so he has also had to add zaroxolyn every other day and they keep upping his potassium because he falls so low. They upped him to eighteen 10 mEq pills per day when his potassium level fell to 2.8. When he takes the zaroxolyn he has to up the potassium pills to 24. This gets him up to 3.8 but still he is always holding fluid. If he stays in bed lying down it doesn't show in his ankles so badly but if he is up for awhile his ankles look like they belong to an elephant. I suppose that's just gravity. I am concerned about the fact that his edema really doesn't seem to ever entirely go away. Is this a common thing?

Jon's July 10 reply to Hanna's July 10, 2001 - Hi Hanna, I am not a doctor but there seem to be several possibilities. Since it is not usual for edema to be chronic, he probably needs a new CHF doctor more than anything else in the world right now.
     Some treatment possibilities would be dose changes or drug changes in ACE inhibitor and diuretics, as well as possibly adding Aldactone and digoxin (Lanoxin); and making sure his dig levels are proper. Too much digoxin is very common and can make things worse instead of better. However, used properly, it can really make a CHFer feel better. If this is not enough, he may need inotropic IV treatment.
     On the other hand, if he is not eating a strict low-sodium diet every single day, he is not going to lick this no matter what drugs are used. He may also need a 2 liter per day fluid intake restriction. He also needs to be as active as possible to prevent deconditioning, which always makes CHF worse. Jon.

Susan B, July 10, 2001 - Hi, I just found a book that I wanted to share with you all. It is "Surviving Your Spouse's Chronic Illness, A Compassionate Guide" by Chris McGonigle, Ph.D. When I thumbed through it at the book store, the chapter titles stood out. For example, one chapter is titled "Diagnosis: Losing the Future." I started crying in the book store and told my husband that I had to have it. On page 15 and 16 of the book the authur, whose husband died after a long battle with MS, writes, "Words can't describe the violence of a serious diagnosis. All the plans, dreams, and hopes we shared with our partner are suddenly torn away. We are robbed of something infinitely precious: the future we planned on with a beloved husband or wife." It was so good to see that I was not alone. I have wanted to stand up and say that we have lost our dreams. However, I can see that there are still more good days than bad days ahead for us. However, that may not always be the case. My husband says he thinks he is better than he is, and I think that he is worse than he is. I hope he is correct. Thanks for letting me vent.

Roseanne S, July 11, 2001 - Hi all, I am sorry if I am posting too often but I don't have a support system. It is just me and my husband against the world. When the social worker talked to Charles about sending in home health nurses to care for his IV when and if we ever get home, he told her to "Forget it. We have been doing this by ourselves for 5 months and we can just keep doing it." He did not understand why I burst into tears! As things seem to be deteriorating every day, I really don't think he will be getting to come home soon.
     Jon, thank you again for the arm numbness not being "nothing to be concerned about, you aren't going to have a heart attack" thing comment. Charles had the angiogram done and it showed that his stent has failed. Scar tissue has formed around it and there is blockage in his left artery. They reinserted the Swan-Ganz cath and checked his pulmonary pressure. It was back up to 35% and they did not attempt angioplasty. He was returned to CCU to try to improve his numbers before they did anything else.
     We were also told by 4 doctors that opening the artery probably won't work and would not improve his condition. When the Swan-Ganz cath was stitched, the doctor hit a vein. Charles seeped blood for over 5 hours before they removed the stitch and tried again. Of course they restitched him at bedside with no numbing. Yesterday they told us that they are not going to do the angioplasty at this time. They are going to do a dye test to see if there is enough of that part of his heart alive to be worth the risk of bypass surgery. I am going to talk to the doctors today, Roseanne S.

Jon's July 11 reply to Roseanne S' July 11, 2001 - Hi Roseanne, If possible, I think I would get another opinion from a doc not affiliated with the current ones; Just a thought. My Swan-Ganz cath puncture site never required any stitches at all to close. When health care personnel seem to be bumbling, it is often because they are not sure what to do or they are inexperienced at doing it. Neither is good. Until you see a "good" team in action, however, you have nothing to compare them to so you tend to accept them as okay. At least that's been my experience. I have since seen very good teams in action and will no longer accept a lower level of care for myself if I have any choice at all.
     When those 4 doctors talked to you, did they explain precisely why opening the artery is not possible, why it won't help if it is indeed possible, or why they do not want to do it if it is possible? Have they explained all available options to you in plain English, along with the potential risks and benefits of each option? Have they suggested to you that you get another opinion from an unaffiliated doctor(s)? Have they discussed with you whether TMLR or other experimental treatments may be options, and where they are available so you can investigate these options? I do not know the details of your husband's situation and I am not a doctor so take my comments with a large grain of salt. I am guessing about all this. However, it seems to me that these are all things they should have done by now. Jon.

Kat R, July 12, 2001 - Hi, I posted concerning my dad and his persistent chest pain. I have just heard about time-released nitroglycerin. Has anyone had experience with this or heard anything positive/negative about this? Just wondering if this may be something for him to consider. Thanks, Kat.

Connie M, July 12, 2001 - Hi, Blessings to all of you and your families. I just need to put Lee Braden's family on your list. She needs some support right now. She lost her husband Allen on July 4th to a long battle with heart disease and diabetes. Her e-mail address is Thanks, Connie Miller.

Lori, July 12, 2001 - Hi, I am writing for my father who recently underwent some tests. He receives care through the VA and information, to say the least, is not forthcoming. I can't get a return call from the doctor for him to explain it to the family. All he was told was that part of his heart is not functioning and open heart surgery is recommended. If his heart is necrotic or dead in the left ventricle, how will surgery help? Is this considered a form of congestive heart failure? They only have him on nitroglycerin and isosorbide 3 times a day. Needless to say, we are seeking an outside opinion and in the meantime gathering as much information as possible. Thanks, Lori.

Tae, July 13, 2001 - Hi, My mom needs a heart transplant. She is currently in Texas but wishes to have it in Louisiana because we have more family members there for support. I currently live in San Diego, but will be moving there next month. Can anyone recommend a cardiac specialist in the Ontario/Pomona/Chino Hills area?

Cathy R, July 13, 2001 - Hi, I have never met any of you but today you are my blessing and I thank you. My husband is 50 and has always been a go-getter. Fifteen years ago he was running 12 to 14 miles per day and he had a severe heart attack. It was one of those weird things - a blood clot dislodged, causing the heart attack. He had significant scarring from this.
     In the past year he's experienced shortness of breath and fatigue. He thought he was getting older and was not able to exercise. Upon my insistance he went to his cardiologist (it's been at least 5 years since he has been to a doctor). His blood pressure was 198/148. They couldn't stress test him because his heart rate was racing. He was diagnosised with dilated cardiomyopathy after a cath. It's been 30 days now. He is on the 4 medications for treatment, stopped smoking, restricted his diet and was told to reduce stress wherever he can. The doctor tells us that the damage is not reversible and is due in large part to the heart attack 15 years ago, along with years of untreated high blood pressure.
     My husband has a stressful job, his personality is perfectionist and he keeps everything inside. His doctor knows all this about him and says the outcome doesn't look as good because of all these factors. We are terrified and feel like this is a death sentence. What we read tells us 50% to 70% of these aptients die in 5 years. We are seriously re-evaluating our circumstances to change our life styles. My husband has 4 years to go before full retirment. We don't know which way to turn first.
     Please, if anyone out there can share with us;How long and to what quality of life do these patients live? We understand everybody's different as to outcome. Are we over-reacting? How serious is this?

Susan B's July 13 reply to Cathy R's July 13, 2001 - Hi Cathy, I understand your fears. My husband became ill this year, out of the blue. These are the steps we have taken:

  1. Learn all we can about treatments and learn the terms, so that we can understand the doctor. This web site is a good place to start. I also use the links and other web sites.
  2. Talk to the doctor about the treatment plan. The first doctors were good but did not communicate. We had to ask too many questions to get information. Get a CHF doc! This does not mean that we have stopped asking questions. It only means that I don't get a blank look back when I talk about the information on this web site and others to see if it applies to my husband's case.
  3. I'm an attorney so I called some friends to get good legal advice about disability and retirement questions. I learned about the options if he has to retire now or if he needs a heart transplant, what we need to do. We are working on our wills (most lawyers never get their own wills done). We are also working on power of attorney and living wills. We are planning for the worst and hoping for the best.
  4. I talked to our health insurance company. My husband is in rehab now that his new drugs are kicking in. I found out that the insurance company would pay for many things that I thought we needed, such as blood pressure machine. They assigned a nurse to oversee his care, and she has been very helpful to me. This is a new insurance company for us and I made sure they know I am attorney and I am taking an active interest in seeing that we get all of his treatments covered.
  5. This month my husband is having a Vo2max test to see where we stand. He can retire in November but he does not want to do so. My parents are trying to talk him into retiring on disability from the fire department and going back to school or working some other fun job while he feels up to it.
  6. We brought pill holders to plan out his week's pills. We printed out the weight chart from Heartfailure online to post on the bathroom door for his daily weight. He plans his week to do his rehab work.
  7. I called for help, to help me handle my busy law practice, and for my depression and fear. I started interviewing other attorneys so I can take time off work to go to the doctor appointments and have some time with my husband. I am now only working 5 days a week rather than the 6 days I have worked for the last 5 years. I tell all my new clients that my husband is ill and that he comes first. I may have other attorneys at their hearings and I can't be in the office every minute of the day. If they don't like that, they need to hire someone else. I treat my clients well and they have been great. My husband was turning blue for 3 days (81% oxygen) and the doctor's office was not pushing for the insurance company to get oxygen to him. This will not happen again. I had to stop working and get on the phones. I am a nice attorney until I am pushed. The doctor's office and the insurance company got on the ball.
  8. We are planning a trip to Alaska. He has always wanted to go and this time next year we will be there. The more information you have, the better you can plan, but no one knows how long anyone has on this earth but God - and He rarely tells us.

Good luck, Susan. If it sounds as if I have it together - I don't. It is still a day by day fight.

Karen D's July 13 reply to Cathy R's July 13, 2001 - Dear Cathy, I know how scared both you and your husband must be right now. Almost 3 years ago we were told that my husband Bill, wouldn't live 6 months without a heart transplant. Well, he hasn't had the transplant and he's still here. Although he had to take medical retirement, he is still able to do many things that he enjoys and has found new hobbies like cooking to fill his day. If there is any way your husband could take a less-stressful job or retire earlier than you planned, it might make a big difference. It will be hard for him to change that hard-driving, perfectionist life style but when he realizes that living this way is harming his health, I hope he will be able to make the changes. Maybe his doctor will be able to recommend a counselor to help him learn to deal with stress and to eliminate it as much as possible. Please let us know how things are going, Karen Deitemeyer.

Paula, July 13, 2001 - Hello Everyone, I am in desperate need of help. I have a 3 1/2 year old son with dilated cardiomyopathy and heart failure. He has been having really bad night terrors every night for awhile now. Does anyone know if this could be from Coreg? They started him on it about a year ago but the PCP doesn't know if it's from that because it is fairly new in children.
     Another question: What is with the 5 year mark everyone always talks about? My son was diagnosed with DCM 2 years ago and now since I keep reading about 5 years I am scared to death of losing him. Is it also true that it is inevitable that he will need a transplant? He sees a transplant coordinator every 6 months but as far as I can see he does great on a daily basis. He just gets bouts of pneumonia. I will appreciate any information anyone has. Thanks, Paula.

Jon's July 13 reply to Paula's July 13, 2001 - Hi Paula, I e-mailed you complete Coreg prescribing info in Acrobat format. Some patients do have sleep disturbances.
     That 5-year statistic came from the Framingham Heart Study (there's tons of info to be found by searching on that topic) and should now be relegated to the trash heap of history. No one knows how long CHFers live now. Period. That study produced those numbers between 1970 and 1990. The 5-year mortality numbers they observed were published in the early 1990s.
     Most patients were not even taking an ACE inhibitor and none were taking beta-blockers in that study. In fact, some patients were taking meds that are now known to be harmful to CHFers (calcium channel blockers). This is all off the top of my head but I have a lot of stuff floating around in this old head, dizzy though it may be. <g> So don't sweat that number and if you have a CHF specialist, please note that he will never use that statistic because he knows it no longer applies. ;-)
     Now, before you get too cocky, remember that if a person has severe CHF, he's in a lot of very serious trouble. Mortality is very high. Those who do not have serious CHF may progress into it at some point, sooner or later. It's a complex, serious illness. However, it is no longer nearly as lethal short-term or medium-term in most of us with less severe CHF. Jon.

Roseanne S, July 16, 2001 - Hi, Here is an update on Charles: We will be on our way to Jewish Hospital in Louisville on Monday. Cincinnati did not attempt to do anything about the 80 to 90% blockage in his artery. The scan showed that part of his heart is dead and getting more oxygen to it will not change anything. His EF has gone from 19% to less than 15%. Nurses and doctors keep trying to tell him he will be at Jewish until they find him a heart but he is not hearing them. He thinks they will put in a defibrillator and send him home. Of course, I realize that the doctors at Jewish may change everything. At least we will have new opinions and perhaps new options. Love and prayers to all, Roseanne Schurick.

Gabi, July 16, 2001 - Hi, Does anyone know of a good SSD lawyer in Dallas, Texas?

Karen D's July 16 reply to Roseanne S' July 16, 2001 - Dear Roseanne, I am hoping when your husband is evaluated by the transplant team at Jewish Hospital that he has as good an outcome as my husband did at Tampa General. When Bill was referred there 2 1/2 years ago his EF was 12 to 15% and he also needed an ICD. The ICD was implanted right away and then the transplant cardiologist began to work with us and with his local cardiologist. Almost the first words she said to him was that it's her job to get him well enough to not need a transplant because that brings on yet another set of problems.
     Bill was closely monitored and eventually the various medications kicked in and he was taken off the list. After the 3-day evaluation process was over, he was sent home and I drove him over for regular check-ups for several months. He saw his local cardiologist at regular intervals, too. He had several Vo2Max tests at Tampa General and it is the results from those tests which that transplant center uses to determine how close a patient is to needing a transplant. His second test was worse than his first but the third was quite a bit better and it was then that he was taken off the list. We will be praying for you and your husband, Karen.

Sharon B, July 19, 2001 - Hello to all, I was wondering if anyone has found anything that works well for their loved ones as far as quality of life? My husband has been exercising and he seems to feel better. Does anyone drink more juice or go to church or take supplements that have improved their life or how their heart functions? I am just trying to get some ideas on how to improve things for all with loved ones with CHF. I wish great health and peace to all.

Diana, July 20, 2001 - Hello, Let me start by stating that my 15 year old son has signs of cardiomyopathy: enlarged heart, murmur, fatigue, forceful heart beat, and a grandfather who was diagnosed in 1975. His grandfather has shown no symptoms other than an enlarged heart. Doctors never told him about the possibility of this being passed on to future generations.
     Getting back to my son, he has an appointment with Cardiovascular Consultants for Monday the 23rd to have an exercise echo and echo done. Can anyone give me any information as to questions I need to ask? What signs to look for when testing is being done? Any statistics on how this disease progresses? Are there stages to the disease to rank severity? Thanks to all who reply. Sincerely, Diana.
Jon's note: A good place to start is here

Melanie, July 24, 2001 - Hi, I am a caregiver for my husband. He had a 100% blockage in April and had a full blown heart attack. He was tasked with stopping smoking and eating right as most heart patients are. He is having a hard time stopping smoking.
     He has two blockages left that they are going to fix later, but one is 85% closed and the other is 95% closed. The one that is closed is called the Widowmaker artery. It is the one that runs down the middle front of the heart. I am so worried that he is going to take a puff of his cigarette and his artery is going to spasm and close up and he is going to die in front of my eyes. I know that I can't do anything but I just wanted to get some replies on how I can handle this.
     I get really upset with him, mad actually. I just can't understand why he can't see that he could die in a split second. Please reply to my message if at least to just encourage me or something. I feel like I am going crazy over this whole thing. Thank you.

Stacy W, July 24, 2001 - Hi, I am wondering if anyone knows much about end-stage CHF? Is weight loss typical? My mom is losing about 5 pounds each week. Are most people on oxygen at home? Is a pulse oximetry in the 70's (without the oxygen on) usual? Do the AICD's fire on a regular (weekly) basis? She is on Lasix and Digoxin. If anyone has any experience with this, I would really appreciate the information. Oh, my mom developed CHF due to a massive MI in January. Her EF is 6 to 10%. Thanks! Stacy.
Jon's note: It sounds like she has cardiac achexia

Pam A's July 25 reply to Stacy W's July 24, 2001 - Hi Stacy, I have lost weight but not each week like that! My weight loss has stabilized. I just don't eat much and my stomach fills up quickly. Eating small meals throughout the day helps me. I use oxygen at home and when I go in the car but when I shop I do okay for a few hours. If I am in my wheelchair, I can do well without O2. I can't walk much anymore without getting breathless. My pulse oximetry is in the 50s with or without oxygen. They always think I died - but I don't die so easy! <g> I do pretty well considering. My cardiologist said my EF was high and all I take are 2 diuretics. I miss having to quit work but just couldn't keep up. I have an okay quality of life so am grateful for that. I don't think I am in end-stage CHF. I hope your mom improves, Pam.

Roseanne S' July 25 reply to Melanie's July 24, 2001 - Hi Melanie, First let me say that I have never been a smoker so I do not know how hard it is to quit. As I'm sure you have been told, you can't do it for him. He has to decide if he wants to live or die, and you cannot do anything about it. Just pray for tolerance and serenity. I was one of the lucky ones; my husband had a 3 pack a day habit for 24 years. He had his MI in February. The hospital agreed to patches (saying they don't work but if it makes him happy). He was in the hospital for 22 days and he stayed on the patches the whole time and for another week after we came home. Then he decided that the patches were too expensive and he was already off the cigarettes anyway. Before we got home his family came in and washed curtains, windows, walls and furniture. I am lucky: he has never wanted one again and cannot stand to be around the smell. At one point he was outside with his brothers when they were smoking and for the next two days he complained about his lungs hurting from the second hand smoke.
     The big question is, are you a smoker? Is anyone in your home a smoker? If you are, the odds are very much against his ever being able to quit. It is not impossible. I do know a couple of people who were convinced that if they smoked even one, they would die, so they were able to quit while those around them continued to smoke.

Roseanne S' July 25 reply to Melanie's July 24, 2001 - Oops, I sent before I was ready! Melanie, you should also be prepared if your husband does not quit, for the fact that some treatment options may not be made available to him. Sorry, but it is true some doctors will not be as active in his treatment if he can't quit. My father and my father-in-law had the same cardiologist. My father loved him and my father-in-law hated him. The differance was that my father was cooperative and willing to do what the doctor told him. The doctor spent a lot of time talking to him and explaining everything. My father-in-law was not cooperative and the same doctor stopped trying to talk to him. When the doctor found out that my father-in-law was not walking, not following the diet, and not taking his meds, he told him to find another doctor.
     Pray a lot and remember it is your husband's choice. There is nothing you can do to change that fact. Roseanne S.

Judy H, July 26, 2001 - Hi, About 2 months ago my husband, Bob, was put on Coumadin for his ventricular thrombosis, which has shown up on every echo from the past year and a half. Since being on Coumadin, he has developed some swelling in his feet and ankles, which goes down when he gets up off of his feet for awhile. He's concerned, but the cardiologist does not seem to be worried. The cardiologist agreed to move his next checkup to the beginning of August.
     Has anyone had any similar experience? Bob has DCM, an EF of about 15%, an ICD, mild secondary pulmonary hypertension, leaky valves, you name it. He can still walk a good mile or two, but this foot swelling is making him miserable; And yes, he goes weekly for the blood test. Thanks again, Judy H.

Roseanne S, July 26, 2001 - Hi All, Just a reminder to question everything! My husband is 1A on the transplant list. The doctors say he is at the top of the list for our region. He was told by the transplant nurse that if he wants to get a heart he has to cooperate in all ways and that his attitude will be the deciding factor. She told him he cannot complain, tell them it hurts or vent. His biggest risk factor is stroke due to his personality type. Yesterday his nurse brought him a double dose of captopril (two 6.25mg pills). He was taking 12.5mg 6 weeks ago but has not since being hospitalized. He asked her about it and she assured him that the doctors wanted him to take it. So he did. Then she went out and checked the chart, and she was wrong.
     His blood pressure dropped to 68 over 27. They increased his IV drips of dobutamine, dopamine and milrinone. His pressure came back up. He sat on the side of the bed and it dropped again to 64 over 24. He fought this for 6 1/2 hours. Of course the nurse said it could not be the captopril; it has to be something else, because captopril would not stay in his system for that long.
     Charles needs an LVAD but with his size and blood type the odds are good that he will receive a heart soon. They do not want to risk two surgeries or have to pass on a heart since he would have to wait 3 days after the LVAD for transplant. So we are just waiting it out for now one hour at a time, Roseanne S.
Jon's note: If a health care provider tells you that you are not "allowed" to complain, go straight to your doctor and request that this person be removed from your care entirely. This is your right! Never be nasty about it but do not waver - for any reason. Your life is worth sticking up for at all times.

Stacey W's July 31 reply to Pam A's July 25, 2001 - Hi Pam, Thank you for the reply and Jon for the note. My mom went to her checkup with the cardiologist, and he told her that her weight loss was due to the fact that she has less heart working and this is her body's way of compensating, trying to decrease body size and therefore workload on the heart - like the cardiac cachexia you mentioned, Jon. Her visiting nurse has encouraged her to increase her calorie intake to combat the weight loss. I don't know if that is so wise if her heart is trying to get her weight down to decrease its work? I'm encouraged that her pulse ox's aren't that out of line with what you have experienced, Pam. She does not like wearing the oxygen because she says it smells funny. Has anyone experienced that? Thanks for the information! Stacy.

Jon's July 31 reply to Stacey W's July 31, 2001 - Hi, I think oxygen smells funny too, but I think it is the plastic cannula you put in your nose that actually has the smell - the plastic tubing.
     One thing to remember about your body's automatic mechanisms for compensating for a weak heart - they always go too far in heart failure patients. See the heart failure page for specifics on how bodily compensation really gets out of whack in us CHFers. Jon.

Roseanne S' July 31 reply to Susan B's July 10, 2001 - Hi Susan, Thank you for the book suggestion. It is a very good resource. I would recommend it to everyone in our situation too. I have purchased 3 copies so I can give them to future friends who find themselves in this nightmare. I gave one to a woman in the ICU waiting room last night. I just told her to pass it on when she did not need it anymore. Roseanne S.

Carol C's July 31 reply to Roseanne S' July 26, 2001 - Hi Roseanne, We are on the transplant list at Jewish also. I don't know who you talked to but that is terrible. We have been going to Jewish for a year and a half and have been treated wonderfully. You need to complain to the coordinator immediately. Hang in there! Carol C. PS. The only thing they really got upset about was the smoking - they really let him have it! Hubby is a non-smoker now for almost a year!

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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