The paperwork never ends The Archives
Loved Ones - May, 2004 Archive Index

Joanne 5-1     update on Chelsie
George H 5-1     caregivers bill of rights
Bhree 5-3     aggressive approach may be needed
Karen S' 5-3 reply to Bhree's 5-3     condolences
Cindy 5-5     seek CHF doc in Pittsburgh
Judi S 5-5     seek referrals for right-heart failure
Jan M's 5-5 reply to Bhree's 5-3     condolences
Wilda 5-8     seek LVAD experiences
Joanne 5-8     update on Chelsie
Renee's 5-10 reply to Kris' 4-29     and to Bhree
Roger G's 5-13 reply to Cathy D's 4-22     a CHFer's perspective
Susan B 5-15     good news update
Georgia 5-15     what can I do for my husband?
Pam V 5-18     seek diabetic low sodium recipes
Cassie 5-18     what will happen to my dad?
Susan B's 5-19 reply to Cassie's 5-18     gathering information
Karen S' 5-19 reply to Goergia's 5-15     change doctors!
Walter K's 5-19 reply to Pam V's 5-18     Splenda is good sugar substitute
Kim 5-19     seek other parents of CHF kids
Elka's 5-21 reply to Kim's 5-19     transplant experience
Stephanie 5-21     what should I do?
Steve's 5-22 reply to Stephanie's 5-21     suggestions
Jamie 5-22     seek CHF doc in Chicago

Joanne, May 1, 2004 - Hi, Chelsie went back to Duke to the cardiologist Wednesday. They gave us a referral to a new doctor that the cardiologist has worked with before and we will meet with him next Thursday. Her EF is still at 48% but her heart is no longer enlarged. The cardiologist said that there is no reason why it should not be enlarged given the valvular damage.
     They are more concerned with her mitral valve than her aortic valve. They are both leaky but are afraid of the mitral valve closing off. They want to wait as long as they can to repair the valve because she is still growing. As long as things stay like they are, they would like to wait. If things get any worse, then they will have to do a repair sooner. She has her next cardiology visit on June 30th. In the meantime she will be seen by the local doctor every 21 days or anytime anything seems to have changed.

George H, May 1, 2004 - Hi caregivers, As a CHF patient and caregiver for a diabetic/hypertensive wife, I have a lot of "fun." Sometimes she is my caregiver and some days I am hers. When we are both having good days, life is great but when we are both having downers, you don't want to be around. However, don't forget to ask yourself occasionally: While I am being a caregiver, who is there for me? If you "go down" under the extra work load you will both go down. I don't know where I found it on the web but it is entitled "The Care Giver's Bill of Rights." I strongly recommend reading it. Regards, George H.

Bhree, May 3, 2004 - Hi, I only posted one other time on this board but I appreciated (and my husband Dan appreciated) the responses. Dan died April 14, only 6-1/2 months after being diagnosed with IDCM. He did not have an ICD implanted since we were waiting for the medication titrations to be completed. We also did not press the doctor on having another ECG.
     I know I can't change the past but given the outcome, I can pass on my experience to others. If your loved one has a low EF (Dan's was around 13% when diagnosed), with other serious heart problems (LBBB, V-tach, PVCs, etc.), I suggest a more aggressive approach. While it is good to be hopeful, there is a need to also accept the reality and the severity of the condition.
     Thanks for listening, thanks for the site and thanks for the support.

Karen S' May 3 reply to Bhree's May 3, 2004 - Dear Bhree, My heart goes out to you. You will be in my prayers. Karen S.

Cindy, May 5, 2004 - Hi, My grandmother needs a CHF specialist in Pittsburgh, Pennsylvania.

Judi S, May 5, 2004 - Hi, My brother-in-law was just diagnosed 2 weeks ago with CHF, he just turned 33 years old. He's been in the hospital since and now they say he's in end-stage failure. They were originally talking about a heart transplant but now just came back saying he's not a candidate because they discovered lung problems. He's never been diagnosed with lung problems. They're saying there are no treatments available to him because it's the right side of his heart that's so severe.
     He's in St. Francis Hospital in New York, which is a top-rated heart hospital. I wanted to see if anyone had any suggestions or referrals of anyone else to see. Obviously, I've abbreviated the story but any help would be appreciated. Thanks.
Jon's note: Cleveland Clinic in Cleveland, Ohio is probably one of the most experienced.

Jan M's May 5 reply to Bhree's May 3, 2004 - Hi, I am so sorry to hear of the passing of your husband Dan. Please know you are in my thoughts and prayers during this difficult time. Please take care of yourself and God bless you. vstuart11@hotmail.comJon.

Wilda, May 8, 2004 - Hi, I would appreciate hearing from others who have an LVAD. My husband just had open heart surgery yesterday to have his put in. I would like to know what to expect with this and what kind of recuperation will be necessary. Thank you. Randy's wife Wilda.

Joanne, May 8, 2004 - Hi, I took Chelsie to the doctor Thursday (the one the cardiologist referred us to asked another doctor in the practice to see her). Anyway, the visit went very well. The doctor the cardiologist spoke with was a guy and he felt that because of Chelsie's age she might be more comfortable with a female doctor - good thought!
     The doctor was in with Chelsie and I for over 2 hours. She did a very thorough exam. She answered all our questions and there were a couple of things she was not sure about. She called me at work the next morning after talking to the cardiologist and actually had the answers. She did not tell me, "Well, I don't know. You will have to ask the cardiologist at your next appointment," like the other doctor did. She even made sure we had all the information necessary to contact her when she is off duty and how to get into direct contact with Duke Cardiology if I should need to.
     Chelsie really liked her as well. This doctor has a child with heart problems as well and seems to be well informed. I asked her about seeing a heart failure specialist and she would be glad to refer us to a specialist but felt at this time Chelsie is well compensated and will discuss her case with a specialist to see what his recommendations are. She has one she consults with for her daughter's problems, and if we are comfortable with her treating Chelsie under his recommendations, she would like to do that. If at any point, either of us feel that this arrangement is not working she will be glad for us to see him.
     Because of our insurance this arrangement would be more cost effective for me. She goes back to see her on June 27th. Hopefully this arrangement will work well.

Renee's May 10 reply to Kris' April 29, 2004 - Hi Kris, Thanks for replying. However, now the specialist says that Frankie isn't a candiate for the BiV pacer. He is talking to the cardilogist for his opinion, I don't know about what, so we're waiting. Frankie had a problem on April 30 and was seen in the emergency room. They said it was an atypical episode, whatever that is! He is also having a problem with retaining fluid, even on a strict diet. They're supposed to be setting up an EP study this week. I just wished they'd decide so something could get done.
     Bhree, I'm sorry for your loss. May God be with you at this time, and give you peace.

Roger G's May 13 reply to Cathy D's April 22, 2004 - Hi, I read your post and my heart is with all of you. Nothing is better than a good snuggle in bed or planting a few tomatoes. I also have CHF.

Susan B, May 15, 2004 - Hello everyone, I wanted to post some happy news. My husband George, had his scheduled every 3 month check-up. He is continuing to do very well with his DCM. George got DCM 3-1/2 years ago. At that time he had an EF of 15 to 20% and his EF has been running 50 to 60%. His 6 minute walk time was up, but not his best since his knee has been hurting. At his last check-up his gout was making his foot black and blue.
     The best news is that we are reducing of his meds! He has been bouncing off the walls saying, "4 pills, 4 pills - I got rid of 4 pills!" Of course he will be on the other meds forever. He wanted to cut Coreg but I would not let him. He is doing fine and I want to keep it that way. He just hates taking the pills.
     I hope that this message gives others hope. When my husband first became ill, the cardio doc (not the same one we have now) was predicting a heart transplant within 7 years. We changed to a CHF doc and the results are wonderful. George's heart is back down to normal size and function. This is not to say that he does not have days when he is not doing as well. He is still SOB at least once a day, but he pushes himself to go, go, go. Thanks for everything. As always, thanks, Jon. I hope this helps others. Susan B.

Georgia, May 15, 2004 - Hi, My husband was diagnosed last May of 2003 with CHF. Since that time he has gone downhill. He is on several heart drugs including Coreg, avapro, Lasix, and digoxin. His doctor did not recommend agressive workup because of a short life expectancy. His heart is very enlarged and he feels tired, sleepy, lightheaded, dizzy, and has a poor appetite all the time. What can I do? Can anyone give me some advice? He is 69 years old.
Jon's note: Immediately change doctors! He needs to be seen by a heart failure specialist as soon as possible.

Pam V, May 18, 2004 - Hi, I am new to this forum. My husband has CHF and I have cardiovascular disease. Larry is on a sodium restricted diet and the cardiologist recommended I should also be on one. I am diabetic. I have purchased enough cookbooks to start my own shop without finding the answer to my quest. The problem is that any low-fat, low-cholesterol, low-sodium cookbooks and recipes have substituted sugar. Suprisingly, with so many diabetic cardiac patients, locating recipes and menu plans is very difficult. Even more puzzling are the cookbooks that give the nutritional statistics and do not include sugar as part of those stats. Any suggestions deeply appreciated. I think I am at the point of writing a cookbook.

Cassie, May 18, 2004 - Hi, My dad was diagnosed with CHF about 3 weeks ago after he broke his leg. They are now going to do a BNP blood test shortly. I would like to know what we are looking at. He seems to not be able to sleep with discomfort. He's waking up really pale and just exhausted. Can someone help me out?

Susan B's May 19 reply to Cassie's May 18, 2004 - Hello Cassie, Welcome to the boards. I am sorry that you need to be here. Your question is broader than you think. Please read The Manual. It is the best place to start. With information, you can ask your father's doctors the right questions to get the information you are asking. Additionally, you can help your father determine if he is getting the treatment he needs. Caregiving for someone with CHF is a big job. I am sure that the same is true for caregiving for other illnesses too.
     Please understand that becoming informed about CHF is going to take time. Please take that time. I know that the time I spend learning about CHF and DCM is well spent. My husband would not have gotten the treatment he has without Jon's site and the information I learned here.
     Just to give you a timeline, I spent a few hours every day for weeks reading and re-reading the information. Of course I was upset and worried about my husband and the information just did not go in my brain that quickly. I was also in denial - my strong firefighting husband (age 45 at the time) just could not have DCM and CHF. He had just been healthy as a horse a few weeks earlier and he just looked too good. That is a problem with people with CHF, they often look just fine.
     You have a lot of questions to ask the doctors. However, the first question might be: Why does your dad have CHF? The answer to that question will lead to more questions. Good luck. Susan B.

Karen S' May 19 reply to Georgia's May 15, 2004 - Dear Georgia, I agree with Jon: Change doctors. My husband was at the point that I thought he wouldn't live long. His cardiologist was no help at all. I went to his PCP and told him that I was sure there was something more that could be done, but that the cardiologist just lectured him about how lucky he was to be alive when he tried to explain his symptoms.
     The PCP took action immediately and did one test after another, sent him to an EP doc and within a few months he was implanted with an ICD, which has helped with his abnormal heart beats and also gives us a little peace of mind. You've got to take the bull by the horns. Be strong and just go for it. Karen S.

Walter K's May 19 reply to Pam V's May 18, 2004 - Hi Pam, You might try using Splenda in place of part or all of the sugar in those recipes. Use it on an equal volume basis. It is far better taste-wise than any other non-sugar sweetener I know of although it does adversely affect the texture of cakes. It is fine for pies and all the other things my wife (chauvinist comment - she does all the cooking) has tried. It is generally available in supermarkets.

Kim, May 19, 2004 - Hi, I have a 14 year old daughter who was diagnosed at 7 months of age with dilated cardiomyapathy of the left ventricle. We live in Houston, Texas. Linda was put on a transplant list when she was diagnosed, after she went into CHF. She was put on meds and we waited. A heart came up after 4 months but we had to turn it down because she had a chest cold. Then 2 more months and she was removed from the list because she was functioning like a normal child with no symptoms. The only way you could tell was by looking at her echo.
     She went like this with no problems until 5th grade when she needed a mitral valve repair, which was successful in helping regurgitation of the blood flow. This was the beginning of the "No, you can't participate in this activity period" but she had many friends in school and led a pretty normal life despite no school sports.
     Last September she had a defibrillator installed in case her heart was beating too fast so it would not go into an abnormal arrhythmia. A couple of weeks ago after her she had a wonderful time at her 8th grade dance, she became ill where she could not breathe very well and was extremely weak and had stomach cramps. It turns out she was in CHF again. Her liver was enlarged and she had fluid retention, creating all the symptoms. She was admitted and given an IV drug that was new to kids but worked great on adults and it literally brought her back to normal. However, she is now on a transplant list again.
     It's scary for her and for me, but it's the only way I can see that would be a better way of life. It's hard for kids when they want to do things like sports but the doctors tell them no. I carry guilt and sadness as a parent because of this because I wish she had a different life. She's tired of being sick but she's a trooper. She's very popular in school so she's worried about the surgery taking her away from them and school. I told her to think of things that some kids go through that she felt would be worse than going through a transplant. We named off a few like cancer, being severely burned or kids being abused, and somehow it seemed to put a brighter side on her situation. It was the only thing I could think of to do but it seemed to help.
     I'd like to talk to parents who would like to air their feelings about their kid's condition. It's one thing to be the one going through it but when it's your child, there are many emotions that you go through like guilt, helplessness and even dread. It's important to talk to others who've been through this to give some advice.

Elka's May 21 reply to Kim's May 19, 2004 - Hi Kim, I'm an 18 year old girl who was diagnosed with DCM at 6 weeks of age. I was doing pretty well up till last year when I suffered severe CHF and consequently had to go on the heart transplant list in Australia.
     I know the difficulties that can arise with being young and being sick. At the time I got really sick I was in my final year of high school and had to eventually quit because I chose to put all my energy into going to the hospital gym and keeping myself fit as much as possible even though I could only do about 10 to 15 minutes on the treadmill and felt very tired afterwards. I nearly didn't make it to my senior prom last year and begged the docs to let me out of hospital so I could go. When I got home, I was so exhausted I couldn't even undress myself. That's when things got really downhill.
     During the time I waited in hospital for my transplant, my friends would call me (I had to stay in an interstate hospital since the state I live in doesn't have a heart transplant unit) to see how I was doing and even after my transplant some of them flew up to Sydney to visit me. The people I met and the life lessons I learned during that time was an amazing experience in itself.
     Six months after my transplant I began first year at university. I find it tough to relate to people my own age because what I've been through and what I've seen is beyond what some people my age will ever see in their life time. Transplant is difficult. It's not an easy option but it does have its rewards. Things have been going really well for me with no rejection and though sometimes I have days when I wish I could eat anything I wanted and not have to watch my cholesterol (the anti-rejection meds require heart transplantees especially to be on a low-cholesterol diet) and all these other things I have to watch out for, like being out in the sun too long, I remind myself that I'm lucky to be around to complain about it.
     Maybe find out if there is a pediatric transplant support group in your area and get your daughter to meet others her age who are going through similar problems, or even talk to older transplantees who had their transplants when they were in their teenage years. I understand how scary this can all be but at the end of the day, if she continues to keep being sick and her quality of life deteriorates, that isn't beneficial to her well being either.
     I really hope that it all goes well. Continue with the support that you are giving her and tell her that as far as the scar goes, once she has the operation make sure she shows it off as much as possible - boys love it! If you or your daughter would like to ask me any other questions, just ask.

Stephanie, May 21, 2004 - Hi, I just found out last night that my mother has CHF. She lives in California and I live in Massachusetts. My mother is not one to dwell on something or tell her family anything about her condition. She lives alone and I am now concerned, after reading everything about CHF. She is 54 years old and works. I am wondering if this is something she will be able to do.
     Also, is it a bad idea she live alone? Seeing that she is 3,000 miles away I am concerned that no one will be there to take care of her. Should I see about moving near her or having her move near me? At least I would know if she was taking care of herself, etc. This is all so new to me I don't know what I should be doing. Thank you, Stephanie.

Steve's May 22 reply to Stephanie's May 21, 2004 - Hi Stephanie, You may want to try and visit her, and talk with her about this. It is sometimes hard for us to talk about CHF because it seems most people don't really understand. Try to find out what class she is in. How would she feel if you were there to help her or her move closer? It is hard to admit you are scared but by seeing her in person, you might be able get more out of her.
     I have had CHF since 2000 and at that time the doctor did not expect me to last a year. With my wife's help and taking care of myself better, he now thinks I have longer. Don't be surprised if it is hard for her to open up at first. Just be there when she needs you. It may not occur at first but if you show her you care that helps more than anything else. Steve.

Jamie, May 22, 2004 - Hi, I have read about the importance of seeing a CHF specialist rather than a typical cardiologist. Can anyone recommend a good one in the Chicago area, preferably the southwest suburbs? Thank you.

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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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