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

Carol S 1-1     good ideas - thanks
Susan B's 1-3 reply to Carol S' 1-1     glad it helped
Rosemarie 1-3     Frank is not doing well
Jon's 1-3 reply to Rosemarie's 1-3     explore all the options
Joy's 1-3 reply to Judy H's 12-30     condolences and thank you
Carol S' 1-5 reply to Rosemarie's 1-3     update & more
Lisa L 1-5     just checking in & more
Victoria 1-16     how do I get my mom to eat more?
Kate's 1-17 reply to Victoria's 1-16     cachexia
Susan B's 1-20 reply to Victoria's 1-16     getting CHFers to eat
Tim 1-20     relationship and CHF
Terry O'Donnell 1-20     how do I get him to a doctor?
Joyce 1-21     it is sure tough being a caregiver!
Susan B's 1-27 reply to Terry O's 1-20     helping others help themselves
Betty's 1-27 reply to Terry O's 1-20     helping others help themselves
Barbara H's 1-27 reply to Victoria's 1-16     stomach edema experience
Roseanne S 1-29     seek transplant experiences

Carol S, January 1, 2004 - Hi, Thanks to both of you, Susan and Donna. I can see that there is a lot of info we do not have about CPAP options. This is something for us to pursue with the doctor next week. John also in the past has delayed going to hospital, in order to get the car serviced. We later found he was having a heart attack at the time. I like the idea of "looking at the paper" - that might work for me. The idea from Susan about the larger fonts for computer use is a good one. I should have thought of that! I appreciate your help. Carol.

Susan B's January 3 reply to Carol S' January 1, 2004 - Hello Carol, My husband's CHF doctor gives us a report at the end of each visit. I draft a memo for before the visit so that nothing will be missed. We have been keeping the reports all together to track his progress. Yes, it may be overkill, but I see this as the fight for his life and quality of life - and mine too.
     My husband is using the cannula type CPAP with the modifications I told you about. Everyone here has so many ideas and suggestions - it is just a matter of finding things that are a match. Good luck with everything. Thanks for letting us know that you liked the suggestions. Susan B.

Rosemarie, January 3, 2004 - Hi,Thank you again Jon, for the opportunity to come on to your web site and seek information from fellow caregivers and just for the general wealth of knowledge that it provides. It must be very time consuming and I for one am very thankful that this is obviously a ministry for you.
     I posted not long ago about my husband Frank after he had experienced a couple of black-outs and was finally hospitalised on November 30 after a fall.
     Since coming home he just seems to have gotten worse. He managed to recover from his sore neck only to come down with a bladder infection which we suspect was caused by the catheter he had in the hospital. Since being over that, he has seen the cardiologist, who again took him of the ARB Atacand, since the doctor said that Frank's blood pressure was still too low.
     He has also had a spell of a couple of weeks off warfarin, since his platelet inhibition was between 8 and 10, and it should be between 2 and 3. He is now back on warfarin with a slightly lower dose and the doctor has reduced his digoxin (Lanoxin) by half. He is currently taking 180mg furosemide a day but his stomach is very swollen, and his feet and legs too. He coughs a lot still, which is of course exhausting for him. Another strange thing which may not be at all related is that his skin seems very irritated and he is continually asking me to scratch his back.
     Frank is adamant that he doesn't want to go to the hospital and I respect that since we both have "living wills." I have oxygen for him at home but he very seldom uses it because he maintains it doesn't make much difference. I have also hired a walking frame (walker) because he is very unsteady on his feet. He sleeps quite a lot and eats very little but I give him whatever he fancies, whenever he wants to eat. His eyes look a little bloodshot and some people have commented that they are a little yellow and that his colour generally is not good. His eyes too are very tired looking, which is very sad for us as family as he has always had a "twinkle" in his eye.
     Frank is not at all scared of dying and in fact expressed to our priest who came to pray with him that he would like it to all to be over now. It's really hard to watch your partner in life (nearly 38 years) struggle like this and I wondered if any of you have experienced similar symptoms and can tell me whether this is likely to go on for a long time?
     I am still working, but fortunately it can be flex-time. However, I whether I should be using up all my leave now or even giving up work, although that would put a serious strain on us financially. We had planned to move into a smaller home but of course that's out of the question now.

Jon's January 3 reply to Rosemarie's January 3, 2004 - Hi Rosemarie, I hope others reply. I only want to address 2 things. I don't know whether these apply to Frank or not; if not, ignore me. First, if he wants to "feel" better, he has to get a heart failure specialist. There are so many therapies available for heart failure, no general cardiololgist can hope to keep up with what is proper for every patient's situation.
     Here's what hangs up so many people. CHF treatments usually improve quality of life at the same time they increase life span. With CHF treatment, it is rarely a case of living longer but living in pain and suffering. Except for inotropes, CHF treatments almost always make you live longer at the same time they make you "feel" better too! So don't get afraid of going into the hospital because you think you'll wind up on 10 machines keeping you alive. That can happen but if you have a CHF specialist, most therapies are started (including inotropes) as an outpatient, not as an inpatient.
     It sounds to me like he needs a series of blood tests. His liver function and electrolytes should be checked for sure. If his appetite is bad and he is swollen, he should have his BNP checked to verify that he is in acute CHF. If he is, and I suspect that he is, he should have more aggressive therapy - not less aggressive, which is what his current doctor is doing. The more aggressive treatment is to make him feel better too!
     He could be on intermittent inotropes to allow him to raise his CHF drug doses, then as they take effect and improve his heart function, he could try to wean off the inotropes. Even if that did not work, the inotropes would make him feel a lot better.
     Please get him to see a CHF specialist not affiliated with his current doctor and explore all the available options so he can improve his quality of life: surgeries, meds, IV drugs, implanted devices, supplements, and more. Jon.

Joy's January 3 reply to Judy H's December 30, 2003 - Dear Judy, My sincere sympathy regarding the death of your husband. Thank you for sharing the events which led to his death and offering your support to all of us whether we are caregivers or people like your husband trying to live and cope with the many challenges of cardiomyopathy and CHF. Thank you and God bless.

Carol S' January 5 reply to Rosemarie's January 3, 2004 - Hi, I would also like to thank Jon very much for this forum. Sometimes local information is not the most complete. My husband John, has been having some balance problems and sleepiness lately, as I said in my December 23rd and 25th messages. He had to be taken by ambulance to a hospital on Friday night. He had been very sleepy when we were having a restaurant lunch and claimed he was too full to eat even though he had barely eaten anything that day.
     Then in the evening he became too weak to stand up from where he had curled up on the bedroom floor, and was not at all responsive when I spoke to him. I do not know if that is the same as a blackout, but I thought the hospital was the best place for him to be.
     Saturday they said he had a lower respiratory infection but today they said he has a big, flabby heart and that is what is causing his coughing and lack of oxygen to his brain. They are pumping him full of antibiotics, and he is rational and responsive, almost his old self. I am not sure what happens now. I just visited a CHF web site and it does give some hope for improvement for enlarged hearts.
     Except for when he had his emergency triple bypass because he had gone into CHF, this is his first visit to the hospital for more than a few hours. He has only gone to a hospital maybe twice for CHF, once for about 6 hours and once I am not sure for how long since he went on his own. It may have only been to ask about what seemed to be an unrelated problem of mucus buildup in his throat after a severe case of bronchitis. The mucus still continues.
     In the past, the symptoms were coughing, shortness of breath, inability to breathe when lying down, and some edema in his legs. John is also very reluctant to seek help until he is "sure" he has a serious enough problem. I can see that we need to go back to assuming every unusual symptom is heart-related.
     When he is ready to come home, we are going to take some serious action as Jon has recommended: CPAP and ask for referral to the CHF clinic locally.
     Rosemarie, I do not know if these symptoms are the same as your husband is experiencing, but if they are, I will post again after we get some medical help. My thoughts are with you and your husband also. Carol.

Lisa L, January 5, 2004 - Hi All, Some of you may recall that I posted on this site just over a year ago asking for your experiences that could help me with my research into the care and support needs of people with CHF and their careers. Well, the research got put on hold while I set up a heart failure service in the east end of London.
     I have just gotten back to my research and have been re-reading some of the e-mails you sent me. I just wanted to thank all those who contributed and let you know that my work continues. In the meantime, the service I set up is going well and I am employing additional staff to help. I hope you are all getting the support you need from professionals and this site. I wish you well in 2004. I will keep an eye on this site for experiences that will help me with the service I provide. This relly is a great resource. Well done, Jon.

Victoria, January 16, 2004 - Hello, I'm attempting to take care of my mom, a CHF patient. She hasn't been eating much for about 6 months and has lost a tremendous amount of weight - and she was already skinny. She does not have nausea or difficulty swallowing, she just has no appetite. Has anyone had a similar experience? Any ideas on how to help her eat and regain some strength?

Kate's January 17 reply to Victoria's January 16, 2004 - Dear Victoria, Anorexia (called cachexia in illness) and serious illness frequently go hand and hand. My dad would not eat at all so we put him on Ensure. He did manage to drink that. You can check with her physician, but there are lots of liquid drinks that are much easier for a really sick patient to tolerate (watch the sodium).
     I'm dealing with a bit of anorexia myself since surgery and I know I have to be really vigilant to make sure I take food. Considering I once had to lose 95 lbs, you can imagine what a different experience this is for me! It is weird I know, but food just doesn't seem to have value.
     Please make sure she stays hydrated as well. After the age of 45, the brain sends fewer and fewer signals to let us know we are thirsty. I hope this helps. Kate.

Susan B's January 20 reply to Victoria's January 16, 2004 - Hello Victoria, We used a little bit of pudding or jello to get my husband's grandfather to eat. Those foods are easier to swallow than most food. He would start his meals with the pudding or jello and then he would eat part of his normal meal. I hope this helps. Susan.

Tim, January 20, 2004 - Hi, The woman I love was diagnosed with CHF 3 years ago. She has been doing great healthwise. We have both changed the way we eat and exercise. She has lost over 100 pounds since then. Her EF ranges between 45 and 50% and she is only taking an ACE inhibitor and is almost completely unrestricted as far as activities.
     This site has been a great help to her during this time and I thank God for Jon and everyone who takes the time to help others on this site. When we found out what changes she would have to make, it just went without question that I would make those changes too. I can't imagine not making the same changes. How could I not do everthing possible to help?
     Now she wants to leave me. She says it's not right that I should have to worry about this stuff. How can I not worry? We have been together for 20 years and I can't imagine a day without her. She says I don't understand and she's right, I don't. The only thing that has ever hurt this badly was when she was in the hospital, and seeing her afraid.

Terry O'Donnell, January 20, 2004 - Hi, This is my first visit to this web site and I could really use some help. My husband is 49 years old. He has not been diagnosed with CHF because I can't get him to a doctor. Here is his story:
     A little over a year ago my husband was hospitalized. His symptom was severe swelling in the feet and legs to the point where his skin had turned ashy and discolored, and fluid was oozing from the skin. He would awaken about every 1/2 hour coughing and choking, then fall asleep sitting up on the edge of the bed. He was tired all the time, but continued to work every day. If he wasn't at work, he was sleeping.
     When he finally agreed to to the hospital, the oxygen level in his blood was down to 23%. He spent 6 days in ICU. He was diagnosed with sleep apnea and COPD. The doctor never did any tests on his heart. He was put on water pills, breathing treatments, meds normally given to asthma sufferers, and potassium. He lost 45 pounds in the week he was in the hospital. He felt great when he got out. He was given oxygen to wear at night when he slept.
     It's been a year and all the symptoms are back. Again, he won't go to the doctor. He is up and down every 20 minutes at night. He sleeps sitting up on the edge of the bed and will literally fall out of bed sleeping. His legs and feet are swollen, almost purple in color, and the top layer of his skin is ashy. His abdomen is red and swollen and has a large black spot on the side.
     I am sure he is in congestive heart failure but I can't convince him to go to the doctor. I am constantly worried that he is going to fall asleep at the wheel (he drives for a living) or just stop breathing. I'm frustrated, angry, and scared all the time. How do I convince him to seek medical attention?

Joyce, January 21, 2004 - Hi, My husband has CHF, a-fib, diabetes. We just had to have our dog put down. My husband is home alone all day and this was his best friend. He is really grieving. He seems to be tired most of the time any more and is in a-fib more often. This condition is so hard on both the ill person and the caregiver. Sometimes it just takes every ounce of stength that I have to work and also take care of my husband. He has been robbed of his manhood and I know that is hard on any man. I pray daily for all the caregivers as I know just how hard it can be.

Susan B's January 27 reply to Terry O's January 20, 2004 - Hello Terry, Welcome to the board. My husband has DCM and he was a fire fighter before he became ill. I was having a hard time getting him to go to the ER with his nose bleeds, but I just called 911 and kept pushing. He is doing very well. His nose bleeds and gout are the big problems now. With my husband I just told him that he had to go - and I am more hardheaded than he is. No one can live with the worry that their loved one is not doing everything reasonable to stay alive and be as well as possible.
     Maybe if your husband believed that he could be better - feel better - he would go. My background is in sales and I believe that selling my husband to get the medical help that he needs is the best deal I can close. The frist step in sales is to see the world as the other person does. What are his goals, needs and desires? You can use carrots and sticks. I use which ever is working at day.
     First a story (true) about using the carrot. My stepfather's father was here this summer and he could barely walk across the room because he was not able to breathe. He was giving up all hope, thinking that he was just getting ready to die. My mom and I talked him into just going to the doctor to see if anything could be done, if there were any meds or proceedures that would make him feel better. We talked a lot about getting back on the golf course because he loves golf. At that time, his heart was only beating 28 beats per minute. The doctor put in a pacemaker in August 2003, and now he is back to golfing 18 holes of golf most days at 85 years old.
     Maybe hearing the bottom line would help your husband. If he continues to deny his body crying out for help, he is likely to die. That death may be avoided if he sees that doctor and takes action. I have told my husband that I don't want to be a widow just because he did not feel like going to the doctor.
     Second, a story (also true) about the stick. I have used my husband's family's actions to illustrate the consequences of not seeking medical treatment when necessary. My husband's grandfather died in the 1940s because he refused to go to the doctor and worked in the field because he thought that he owed his neighbors for the work that they had done in his fields. He left his wife and 12 children (the youngest was under 10 years old) because he would not take care of his health. I am not above reminding my husband of the pain and sorrow his grandfather's death brought to his family. His grandfather needed a simple operation to remove his appendix but he chose to act in a manner than left his wife and children without him to provide for them. They had to take in boarders to make ends met and most of the kids left home in the armed services to not be a drain on their mother's limited income.
     Remember when you are talking to him that you are fighting for his life, his quailty of life, and your quality of life. I know how to argue and I hope this helps you. If you have to "fight dirty" by begging and pleading, then so be it. I believe the 3 things listed above are worth fighting for and I plan to continue to win that fight for both of us. There are two ways to argue: With reason and with emotion. It sounds as if your husband will not see the reasons to go, but maybe you can use emotion to get him to go. I have also told my husband that he is seeking treatment for me even if he would not do it for himself - very true, so that I will not have to worry if he is getting the treatments he needs. Good luck. I hope this helps. Susan B.

Betty's January 27 reply to Terry O's January 20, 2004 - Hi, I feel for you, Terry. Why are men so thoughtless and stubborn? I have had IDCM and diabetes since 1999. I always try to do all the things I should do, like diet, exercise, and rest. I am doing pretty well. My EF is back up to 48% after being down to 10% in 2001.
     My husband wouldn't go to the doctor either, even though he had been having chest pain and a really bad spell at work. Well, to make a long story short, he dropped dead at work in July of 2001. It was really hard on our family: Son, daughter, and a grandson that he just adored.
     Please try to get your husband to read this and see a doctor. If he cares about his family, please do this. Every day of my life I regret not trying harder to get my husband to go to the doctor sooner. Now it is too late. It really hurts all of us.
     Thanks for this site Jon, it has been a life saver. I've learned more here than from any doctor, even the Cleveland Clinic.

Barbara H's January 27 reply to Victoria's January 16, 2004 - Hi Victoria, My dad, who has CHF, went through the same thing last spring and summer. For months he complained that he had no appetite and that his stomach felt full even before he ate any part of his meal. We believe now that whenever this symptom came on that he was having an untreated CHF episode with fluid building up in his stomach, which is where he tends to retains it versus his legs. We certainly won't react the same passive way in the future - thinking the symptom is not related to CHF!
     Two hospital stays for pneumonia and then C-dif (an extremely potent virus) helped clear him of any retained fluid. Also during that time, a gastroenterologist visited him, which helped. The gastro doctor prescribed him the pill Zelnorm; it is meant to treat irritable bowel syndrome in women, but apparently also helps to clear the stomach, and it has helped. Since late summer he has not had any further appetite problems and has slowly regained about 10 pounds. Take care. Barbara.

Roseanne S, January 29, 2004 - Hi, My husband received a successful heart transplant in November of 2001. He has experienced little or no rejection. He is getting his med levels checked every other month. He is on prograf 6mg, Cellcept, predisone 5mg, magox,and diovan. He is also taking a number of herbs to lower his cholesterol that transplant staff is aware of and has approved.
     My question is to anyone who has had a transplant. Since December of 2003 I have noticed a change in him - he is becoming paranoid. Example: He would not open any Christmas cards that had return addresses from my family and friends, saying that they really were for me. Now he is opening all the mail, including letters from my family, then he calls me at work and tells me what they said, and then throws them away. He does not want me to call my children or family because they don't want to talk to him when they call. He has started making survival lists. He has stockpiled water, bleach, canned food, and kerosene. We have 50 gallons of kerosene in our gargage. I called transplant they said this is not a med problem since he has not had any med changes in over a year. They want me to talk him into being admitted to the psychiatric unit for evaluation. He will never agree to do that, because he says there is nothing wrong with him. They told me my only option is to wait until he becomes a danger and then call the police and have him involuntarily committed. Has anyone else experienced this? Thank you, Roseanne.
Jon's note: Just because meds have not been changed does not mean meds aren't the problem. Long-term prednisone can cause mental and emotional instability of many kinds. Ask them if he can try going off the prednisone to see if it helps.

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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