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Loved Ones - December, 2003 Archive Index

Tham Wai Keong 12-3     supplement suggestion
Cynthia Wilson 12-8     drawing off fluid with needle
Donna 12-9     am I in the right place?
Lynn 12-12     seeking answers
Kat R 12-12     seek surgery experiences
Rosemarie 12-14     seek similar experiences
Donna H's 12-26 reply to Claire's 11-25     pacemaker experience
Karen S' 12-19 reply to Rosemarie's 12-14     blacking out experience
Barbra M 12-23     could really use some advice
Carol S 12-23     could really use some advice
Jon's 12-23 reply to Carol S' 12-23     I hope others also reply
Carol S' 12-25 reply to Jon's 12-23     more info
Susan B's 12-25 reply to Carol S' 12-23     husbands, coping & more
Susan B's 12-29 reply to Carol S' 12-25     CPAP experience & more
Donna H's 12-29 reply to Carol S' 12-25     caregiving experiences
Judy H 12-30     my husband died, end-stage experiences
Dena 12-30     seek experiences with mental states & CHF

Tham Wai Keong, December 3, 2003 - Hi, I believe a very innovative and upcoming supplement for heart failure that appears to have been overlooked here is ribose. Ribose appears to be unique in its mode of action and benefits in that it works at the cellular level independent of oxygen, making it useful for ischemic tissue - unlike CoQ10 and L-carnitine.
     Doses used in studies for CHF and cardiomyopathy were 15 grams daily, or 5 grams TID. Ribose is typically used by bodybuilders, and can be obtained at any health food store. It's not cheap, with prices being comparable to CoQ10.
     My father has CHF and cardiomyopathy and I've being giving him everything from sulbutiamine (fat-soluble form of thiamine, typically used for amnesia) to heart glandulars.

Cynthia Wilson, December 8, 2003 - Hi, My 82 year old husband is in class 4 CHF. In August, he underwent a guided thorcentesis to remove close to 2 liters of fluid in his chest cavity. I feel certain that fluid is again accumulating despite restricted fluid intake and powerful diuretics. I wonder if repeated thorcentesis procedures are medically practical? Our doctor commented that there are downsides to this procedure, including scarring of tissue and did not suggest another one. Does anyone have experience with this? Thank you!
Jon's note: Have you read about ultrafiltration?

Donna, December 9, 2003 - Hi, First, I believe I should be in the caregivers for CHF? Donna.

Lynn, December 12, 2003 - Hi, My brother has been on the heart transplant list for almost 3 years at Henny Ford hospital in Michigan. He was number 2 on the list until his Medicare would only pay 80% and of course he cannot. He is now on IVs waiting and now they moved him to number 7. How do you get him on another list?
     Also, my husband took his life 2 years ago and I donated hid organs. I find myself not understanding why or how to help my brother.
Jon's note: Have you talked to the hospital social worker? Gone to doctor appointments with your brother? Two good ways to get answers.

Kat R, December 12, 2003 - Hi, My fella had his second bypass just 2 years ago and nearly died. He was doing very well considering all that he went through. Now he has been told that he has a leaky valve and that is why he is retaining fluid in his left leg and abdomen. Has anyone dealt with this? It is so overwhelming and he is not sure if he would consent to surgery considering what happened 2 years ago.

Rosemarie, December 14, 2003 - Hi, Thank you Jon for this amazing web site and to all the people who write in. Although I haven't posted for awhile, I regularly read the letters. I live in South Africa and we have a wonderful cardiologist who keeps up with world trends and travels overseas quite often. I have come to the conclusion however that we do not in this country take into consideration regular checking of conditions and the effects that diet can have on heart conditions.
     I am writing now to see if anyone can throw any light on what my husband Frank is struggling with. He was diagnosed with cardiomyopathy 3-1/2 years ago and medication has kept him fairly well though he has ups and downs. He also has atrial fibrillation. This past year he has had several "black-outs" and the doctor warned us that he mustn't get up too quickly and especially when he is coughing he must sit down.
     On November 28 he had a black-out and fell awkwardly, and hurt his neck. He was taken to a hospital on a spinal board in case of serious injury but the x-rays showed no damage to his vertabra and we have concluded that he has just damaged the muscles badly. He has been wearing a soft collar most of the time since. It was established that his blood pressure was too low and while in the hospital they took him off Atacand (candesartan cilexitil) and also Unat (torsemide or Demadex). He was discharged from the hospital and told to return to his old medication.
     We have since seen the cardiologist and he has removed the Atacand again and kept his Unat to 10mg three times a day. He has been taking painkillers for his neck and continues with his mild sleeping tablet. While in the hospital he eventually regained his appetite and started enjoying food again but since he's been home he is again struggling with his stomach. He has a lot of gas and quite often feels nauseous and disinterested in food. He sometimes vomits. Although he eats very little, his stomach remains large.
     His cough continues to be a problem and now the doctors are saying that this could be due to the fact that his lungs are not very good. For some time he has not been able to do much but nevertheless is still able to walk about and perhaps prepare a meal if he feels like it. Last night he hardly slept because he was up what seemed like every half an hour or so to pass water, which he said was painful. In the hospital he had a catheter in and he does have a prostrate problem, which they cannot operate on because he forms clots. I am beginning to wonder whether this is all connected to the fact that his heart doesn't work properly or just by the way.
     He is 66 years old, which is relatively young these days. I am at a loss to know how to help him and hate to see him struggling like this. Is there anyone who has had a similar experience?

Donna H's December 16 reply to Claire's November 25, 2003 - Hi, My husband who was diagnosed at age 49 and finally had a pacemaker put in during August of 2002, right after his 52nd birthday. It has proved to be one of the best things that has happened since he was diagnosed. From August of 2002 until now, nearly 18 months, he has not had any hospital stays.
     He doesn't always feel the best, but good days and not so good days are part of this ongoing disease. He doesn't do anything special with his pacemaker and is far too lax with his telephone checks. However, he has met with Guidant reps twice and his cardiologist 3 times and they all seem happy. Each time they tweak the settings just a little but he never can tell any difference. Does your husband have a pacemaker or an ICD?

Karen S' December 19 reply to Rosemarie's December 14, 2003 - Hi Rosemarie, My husband is 57 years old and has had CHF and cardiomyopathy for almost 3 years now. He also has polymyalgia rheumatica and lower back problems. He went through spells when his blood pressure would drop and he would almost black out. He got a bad cold last winter (kept it for 5 months) and blacked out several times when coughing. He fell down a few times but luckily, the most damage he did was bruising. He also has swelling, primarily in his abdomen.
     In April he was implanted with an ICD, which has helped tremendously. He's only had one bad spell with low blood pressure since then and has not blacked out at all. His abdomen is still swollen but that's just something he has to live with. He watches his sodium intake, which helps some. Hang in there and take care of yourself. Karen S.

Barbra M, December 23, 2003 - Hello, I am the sudden caregiver for my folks, aged 80 and 83, that were living in the family home of 40 years and in seemingly good health. My mom went in to have a knee replaced and suddenly she was having open heart surgery and an aortic valve replacement. CHF had been diagnosed a few years before but she never told us.
     My dad came down with dementia symptoms and again my mom was covering for him so we did not know. Now after nearly 6 months in the hospital, she is home but it is not her. Suddenly she has become this stranger that could care less about any of us and is mad that she is still living. I have basically given up my life to care for them. I can't even get away to attend support groups. Any ideas?

Carol S, December 23, 2003 - Hi, I have not posted for awhile but I am feeling rather overwhelmed at the moment. My husband had a heart attack in 1989 shortly after being diagnosed with diabetes. He had a triple bypass in 1997 and a second heart attack in 1999. At the time of the bypass he had gone into heart failure, and the surgery scheduled for May occurred in April as an emergency.
     I wrote some time ago about the difficulty in getting him to stick to a good diet plan. He has become more sensitive to sodium and salt but he insists he must have a little salt to make things taste good.
     I am also concerned about his sugar intake. He has been relying on A1C test results. I think he is having wide swings resulting in a good average. He does not seem to accept that these things all affect how he feels. Last winter a very bad bout of bronchitis has worsened the problems he has with sleeping. This is ongoing. He has had sleep tests. He rarely gets more than 3 hours consecutively and he is always tired. His legs have very little strength and I think that is why. He is also having problems with his balance.
     He has a cardiologist but his main care is from our family doctor, who has been on sabbatical since August. I am not sure what the sleep test results were. We did not bring them up with the doctor in August because we were planning a trip and John did not want to be told he could not go. He has been told he must not drive if he is sleepy.
     John has gone from being a very active retired person looking after the house, to someone who can barely walk. I do not know whether this can all be a result of the sleep problems. I am convinced that he stops breathing at night and that is what wakes him up. However, it has reached the point where we can't even discuss it because he says I am badgering him. He says I am worse for his health than salt.
     I don't know how to back off. I am extremely worried. I need a boost for Christmas. Help. Carol.

Jon's December 23 reply to Carol S' December 23, 2003 - Hi Carol, I can only make suggestions, based on very scanty knowledge of your husband. I have suffered terrible sleep problems in the past and have researched it carefully. My suggestions are:

  1. Get the sleep test results immediately. If they show sleep apnea or what is called Cheyne-Stokes respiration, get him to a sleep specialist as quickly as possible. Such troubles worsen heart function. He may need a CPAP at night
  2. Be sure to have your hubby sign HIPPA forms at all his doctors' offices allowing you to talk to his doctors and nurses and also for you to read and get copies of his medical records. That way you can get the information you need without needling him. It will help you pick your battles. <g>
  3. Talk to his cardiologist about possibly treating him with testosterone and/or human growth hormone. Growth hormone injections for CHF are in trials and he may well be eligible. Disturbed sleep in middle-aged to elderly men severely disrupts HGH production in the body and CHF lowers testosterone levels. If his cardiologist won't consider it, find a doctor who will.
  4. If he won't raise the roof about it, cook his low-sodium food spicier, using hot peppers, homemade salsa, lots of spices and herbs like coumin, ground cayenne, leaf oregano, leaf basil, fresh rosemary, Spanish paprika, and curry powder. This will seriously help him avoid that salt shaker.
  5. Try to get him involved in some activity - anything to keep his mind active. Maybe he can start a web page (buy him a web page editor as a gift if he is into computers at all); get him a series of gift certificates to various kinds of stores and let him pick the gifts for himself - maybe some will be hobby-type things; play board or card games with him on a regular basis; whatever you can think of to take his mind off your "nagging" ;-) I mean balance your attention to his health with attention that he enjoys getting from you.

For what it's worth. I hope others respond - others who have actual caregiving experience, which I lack as far as heart failure goes. Jon.

Carol S' December 25 reply to Jon's December 23, 2003 - Hi, John says he will never be able to wear a CPAP mask because he can't breathe with it. Thanks for the suggestions. Our family doctor is back the first week of January and John has an appointment then so I will be going with him. I usually do this so I know what is happening and to help with reporting symptoms. I sometimes fear that I may slant my comments and lead the doctor in the wrong direction.
     Here is a bit more detail. John is 67 and has had CHF for about 6 years. His doctor has said he is class 4. He had some serious impairment to his left ventricle from his earlier heart attacks. He has a heart block and this is being monitored at 6-month intervals. A pacemaker has been mentioned as a possible treatment for that.
     Despite this, except for when he had his heart attacks and his bypass, he has only spent a few hours in the hospital during 2 acute CHF episodes. Our doctor had said back in August that John is doing very well keeping to his diet.
     John has some hearing loss and possibly some short-term memory difficulties as a result of the bypass operation. So after a little while, he forgets some of what the doctor has said. When I remind him, that can cause friction. He is very stubborn and usually very intelligent. He is a former physicist and electronics engineer. I have tried to get him interested in the computer and he used to do some programming back in the Cobol and Fortran days, but he does not really have a lot of patience for using the web and is not the hobby sort of person.
     He is a Renaissance buff and used to like to read, however he also has had cataracts and I don't think he finds reading very easy anymore. I think that also makes computer use more difficult for him. I have noticed that he seems to do better when we are away from home, as we were in September. Sightseeing is tiring, but that seems to help John sleep. When he has therapeutic massages, his legs work better. So I thought that it would be good for him to get away from the house at least a couple of times a week.
     Mostly, with so many things going on, I don't know whether the symptoms he has are related to his sleep problem or something elsem so I tend to focus on what he is eating. How do you cope with it? He has to watch sugar intake. Processed foods: When they take out sugar, they add salt for taste. When they take out fat, they add salt for taste, and they add sodium to everything. If it is low fat, chances are it has more sodium than the regular version. Diabetes and diuretics make you thirsty, while drinking makes you retain water.
     We are in Canada. I am not sure if John has been offered some of the tests I have seen mentioned here. I think we have been too passive and I have done lots of reading on diabetes, but not as much on CHF. I bought the book Success With Heart Failure. I am not sure if John read it but I intend to. Oh yes, and to top it off, I have just had to start meds myself for Type 2 diabetes. I don't have time for my disease, I need to help John.
     I am sorry to go on at such length. The good news is that tonight John is seeming better and has decided he is not going to drag around, and if he drops dead so be it. I like to see some spirit but I don't want him dropping dead. I keep thinking about how many people don't make it through Christmas. Thank you so much for this forum. It is a lifeline. Carol.

Susan B's December 25 reply to Carol S' December 23, 2003 - Hello Carol, My husband has sleep apnea and DCM. He has a CPAP machine and it is wonderful - for both of us. I talked my sister into having her husband tested because he snores so loudly, and now he is using a CPAP too. She says the same thing: Our husbands are sleeping more and are much nicer and happier. With sleep, our husbands are their old selves again, with more energy and are much easier to live with.
     Lack of sleep creates many problems, including people not thinking clearly. Does your husband have any friends who are using a CPAP and who could tell him how they feel? My husband is less resistant to changes if he hears it from more than just me.
     My husband started out with CHF saying that he was well. He was very mad at me for even saying that he was ill. He was working as a fire fighter in a very busy company and could not believe that he would not return to working as a fire fighter in a few months. We have been married a long time (just over 25 years) and I told him that I needed to talk about his illness in realistic terms. He wanted to live in denial. We agreed to let him live in denial as long as he took the meds, followed the exercise plan, charted his weight daily, and followed the low-sodium diet.
     We sat down and agreed on what our roles were going to be. I would read everything on the illness and he would follow the plan. I only step in and stop him from doing something if he is really over doing. I have dragged him to the ER when his nose would not stop bleeding after one hour - several times. I call his work (911 dispatch) and have them send over fire fighters (EMTs) to check him out before we go to the ER if I am afraid.
     I think that our frank discussions that I was afraid have helped. However, he says that he doesn't want to upset me. I go to almost all his doctor's visits. I draft a memo of things to discuss and as he would say, I tell on him at the doctor's visit. We sometimes disagree on what needs to be told, even in front of the doctors, but he normally backs down.
     I have to give my husband the information about his illness because he does not want to move out of denial, but as his health has improved he is more accepting of suggestions. For us, sitting down and talking about want we wanted and expected from each other has made a difference. My husband, who is normally happy go lucky, was very mad that he was ill. I took the brunt of it because, well, I'm here. I did not take it personally because I know that it wasn't me, it was the illness. We are doing much better with our roles and expectations.
     I hope this helps. Make sure that you have a support system where you get to vent, even if it is just here. I vent here very often. Oh, one selling point on the CPAP is that now my husband is not falling asleep watching his TV shows - like football or movies he wants to watch. Before, when we were just sitting around quietly, he would fall asleep even at the doctor's office. He doesn't do that any more. Good luck and our prayers are with you. Susan B.

Susan B's December 29 reply to Carol S' December 25, 2003 - Hello Carol, My husband does not wear a mask for his CPAP machine. When we went to check out the machines, he was offered several different head gear styles. Because he sleeps on his stomach, he picked the tubing and he uses velcro to hold it tight to his head. It was designed to go around his ears and connect under his chin. But we modified that with the help of the supplier's office.
     The machine is timed to increase the air 1/2 hour after it is started. This gives him time to get to sleep and then it kicks into high gear. Don't give up without trying to modify the system to work for your husband. If he has sleep apnea, he needs the machine or he needs to take other steps to correct the sleep apnea. Several of our friends no longer have sleep apnea because they lost weight and they were fine. Not everyone with sleep apnea is overweight, so this may or may not help your husband. One of our friends had surgery and it worked to correct his sleep apnea.
     You may want to play with the computer to change the font size to see if that helps him see. One of the wonderful things about computers is that some people can use them because of the flexiblity of the font size and style. Some fonts are easier to read than others. He should adjust it to get the most out of the commputer. Good luck. Again, you and your family are in our prayers. Susan B.

Donna H's December 29 reply to Carol S' December 25, 2003 - Hi, My husband was diagnosed with CHF 3-1/2 years ago, at the age of 49. Like most people, he thought he would get over it and go back to what his life was before. Even the day he first went to the doctor and she was trying to get an ambulance for him to go to a hospital, he was telling her that he couldn't because he had to go to work at 4:00 PM!
     From the beginning, I found that I needed to be at all his doctor's appointments. Like you, I found that later we would have discussions and he would remember things differently. From then on, I took a page of questions when we went to the doctor and I wrote down anything the doctor said we might be discussing later. Having it in black and white makes it easier to say, "Let's see what the paper says" This wasn't as threatening to him. Yes, he admits now that he can't think as clearly as he did before all the heart caths and medication but he is getting better.
     Last fall he was diagnosed with diabetes but refused to accept the diagnosis. Since he would not take the medication, I read everything I could find and we went on a strict diet. He still tests every other day and his readings are in the 112 to 115 range without any medication. We chose to go on a diet with no processed foods. He eats as much as he wants of the allowed foods like meat, cheese, fresh veggies and butter; it is working for us. For the first time, he is losing weight and is really feeling the best he has for some time. Of course, his pacemaker has helped tremendously.
     He also uses a CPAP any time he sleeps. Now he won't go without it. The noise is even comforting to me. Has he thought of using the cannula type instead of the mask type? I know that some people find them more comfortable.
     I worried about being a pest because I asked the doctors so many questions and always was right there. When the doctor told me that my husband probably wouldn't have survived without my input, I realized I have done the right thing. Being the caretaker isn't easy but it is necessary sometimes. Take care of yourself too!

Judy H, December 30, 2003 - Hi, On December 19th, my husband Bob lost his battle with heart failure and finally found his place of rest. He had 3 major hospitalizations this past year, each one taking more of a toll on him than the last. He was in critical condition in February and March with hyperkalemia (his potassium was over 10) and at that time developed more arrhythmias and kidney problems. In July and August, he had kidney stones and it was at that time the EP doc decided to upgrade Bob's ICD to a bi-ventricular pacemaker/ICD.
     At first he seemed better but at that time he also developed ascites. He ended up going home on oxygen for the first time. In October he was again critical, this time with pancreatitis, and then he went into severe heart failure with his EF maybe 10%. In November he left the hospital with a portable pump for continuous IV dobutamine but he still had his fighting spirit.
     We had home health care every day and then every other day to change his IV medication. I am happy to say that he was able to enjoy himself for awhile and we had a wonderful Thanksgiving together. Not long after that, he started to deteriorate even further and he could no longer enjoy the most simple things in life. The day he died, he said he was tired of the pain and suffering. He stood up to walk and as I was trying to help him, he collapsed and never regained consciousness.
     When the paramedics came, from what I saw on the monitor and from what I observed, I knew he had reached the end. He died in the ER with me and my son at his side, lights dimmed, no monitors, no interventions, finally free and with dignity.
     Thanks Jon, for sharing your knowledge and hope. Bob was first diagnosed early in 1998 and at that time, with a 30% EF, there was nothing he couldn't do! I think a lot of things we learned at this site helped to extend and better Bob's quality of life. I am still going to reexamine all that he went through in the last year of his life, to give myself some closure.
     If anyone has questions about end-stage cardiomyopathy, I am happy to share what I have learned. I read some of the posts here and I have concerns for those with loved ones who are dealing with some very serious issues, such as stomach edema and kidney problems, because these are some of the things that Bob did not have to deal with until the last year of his life. I cannot stress enough how important those blood tests are, when your loved one starts walking a very fine line with some of the medications.
     I would love to say that everyone diagnosed with CHF will overcome it, but some will not, but that is no reason to ever give up. Bob had great determination and pulled through the worst, many, many times. May God bless you all in the new year and help you find the strength you need.

Dena, December 30, 2003 - Hi, My sister and I have been the main caregivers for our mom for the last 3 years. She is at the end of her class 4 CHF. We have been blessed to have 2 teenage boys to help us get her up at night to go to the bathroom and do other things. This process can take 2 or 3 hours to complete because she can't go back to sleep and we can't let her up by herself. She has many other health problems and is very dear to us so we have kept her home with us.
     Recently we had to call in hospice. This is such a scary thing to do. About 2-1/2 months ago her legs just quit working and she became scared, thinking everyone was trying to hurt her and being so very confused. Until this time her mind was just fine. We have had to put her in a health care facility and it is breaking our hearts. We visit her every day.
     The doctors don't seem to know why her mind is like this. She has always been a kind and caring person, but she has started yelling at us and those around her. We don't think it is because of where she is because she has only been there 2 weeks. She was very confused before she was put there, too. She is on morphine and ativan to keep her calm. She is not really in much pain, and I thank God for this.
     When she first got to the facility, she was her old self for 2 days and then slipped back again. We were told not to see her for a couple of days to see if that made a difference, but it did not. At this point her body is stronger than her mind. Hospice is still involved in her care even though she is at the health care facility. She is a no-code and has been for about a year.
     It hurts me so badly to see how confused she is. Her body shutting down we were prepared for, but not her mind. Her vital signs are good and her oxygen saturations are good on 3.5 liters of oxygen per hour.
     Has anyone experienced this before? If so, did you find any medicine or anything that helped. She was checked for a urinary tract infection and that is not the problem. Thanks for any help. All of you are in my prayers.

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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