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

Tamika R 8-1     seek support in Florida & more
Lisa Z 8-1     questions, venting, uncertainty
Hasena Williams 8-1     questions - Medicaid & Secure Horizons
Autumn's 8-2 reply to Hasena Williams' 8-1     health insurance issues
Susan B's 8-2 reply to Hasena Williams' 8-1     state insurance commissioner
Susan B 8-3     some good news, thanks for this site
Roseanne S 8-3     Charles got LVAD & more
Sue 8-6     intro & more
Roy 8-7     intro & more
Kat R 8-7     questions about pain and timing
Susan B's 8-8 reply to Kat R's 8-7     work, pain, weather
Susan B's 8-8 reply to Roy's 8-7     CHF information, coping & more
Rachel 8-9     seek biventricular pacing experience
Jon's 8-9 reply to Rachel's 8-9     quick question
Roy 8-9     Coumadin and CoQ10 interaction question
Deidra 8-9     how can we get my dad to sleep?
Lee R's 8-9 reply to Rachel's 8-9     resynchronization pacemakers/ICDs
Mary Lou L's 8-9 reply to Lisa Z's 8-1     financial help with meds
Laura 8-10     update - good news & more
Vivian G's reply to Roy's 8-9     CoQ10 and Coumadin
Davida's 8-11reply to Sharon B's 7-19     weights, exercise & more
Davida's 8-11reply to Melanie's 7-24     coping with husband's CHF
Davida's 8-11reply to Deidra's 8-9     sleeping schedule
Loretta 8-13     seek CHF doc in Lake City, Florida area
Hanna 8-13     very confused about husband's condition
Jon's 8-13 reply to Hanna's 8-13     a possibility
Katie's 8-14 reply to Roseanne's 7-26     waiting for a heart experience
Roseanne's 8-15 reply to Katie's 8-14     thank you
Andrea J 8-16     update on mom - good news! & more
Roseanne S 8-16     VRE
Kathy 8-16     trouble swallowing - seek advice
Roseanne S 8-18     VRE explained - seek info
Patricia 8-18     seek CHF doc in Delaware
Joyce S 8-18     dealing with attitude
Mary T 8-18     CHF cough - what to do?
Roseanne S 8-20     SSA Disability experience
Roy 8-23     seek advice about mom's treatment
Deborah L 8-24     intro
Davida's 8-24 reply to Roy's 8-23     helping mum
Susan B's 8-24 reply to Roy's 8-23     helping mum
Lisa Z's 8-24 reply to Mary Lou L's 8-9     a thank you
Deborah L 8-27     questions - diet and fluids, seek tips
Jon's 8-27 reply to Deborah L's 8-27     diet and fluids
Karen D's 8-27 reply to Deborah L's 8-27     low sodium diet and fluids
Peggy's 8-29 reply to Joyce's 8-18     good attitude helps
Kat R 8-30     seek advice - pain & breathing problems
Carolyn S 8-31     new pacemkaer for CHF

Tamika R, August 1, 2001 - Hi, To whoever might have any information on a support group in Tampa, Florida: My mother has been dealing with heart problems for 30 years. She has had 4-way bypass operation and a pacemaker. Her fighting spirit has kept her alive this long but now we are at a stand still. I got a call from the only doctor that would see her and to all our families' disappointment, she is now un operative. We feel a loss of hope but I must try to ease my mother's journey by seeking out some kind of peace for her. If anyone can help or can understand the pain, please write me. Thank you, Tamika R.

Lisa Z, August 1, 2001 - Hi everyone, My dad is 71. He was diagnosed with dilated cardiomyopathy about 6 years ago. I am an only child and very close to my mom and dad. In January, my dad got a bad infection which attacked his kidneys and bladder and he couldn't eliminate. Everything backed up and he went into flash pulmonary edema. The nurses in CCU kept pumping him full of fluids and almost killed him. I got on the phone and called his PCP at home, who rushed to the hospital, catheterized him and promptly removed 5 liters of fluid. He had to be intubated and put on a ventilator. Out of nowhere, as my mom and I sat in his room, he went into cardiac arrest at 3:00 AM. It was the most horrible thing ever. I can't believe the nightmare. I still wake up and see the whole thing over and over again. They brought him back and the next day he did better and got off the ventilator. At 7:00 AM he arrested again and they brought him back again.
     He was transferred to a city hospital and after the infection was gone (5 days later), they installed an ICD. He has done remarkably well. He golfs, goes out to dinner and only uses oxygen at night. He does have sleep apnea. He has had one bout with CHF since then, on July 9th. He drank something with too much sodium and missed a diuretic.
     The thing is, he is in and out of depression. He is happy to be alive but feels like he can't work, do things he used to, etc,... He is a big strong man but I know he is very scared. I am so close to him that I get choked up reading the posted messages. By the way, thank you Jon for such a wonderful site. I want to do more for him but I don't know what. Since he can't really work much, all the meds are draining my parents' funds. He gets some Social Security so I don't know how much assistance he would qualify for.
     Basically, I am just venting and looking for any information you guys want to send me. His doctors are considering putting him on Coumadin, and I am kind of nervous about that. He takes 12 pills a day already. I just am so scared of losing him, even though I know that we all have to go sometime.

Hasena Williams, August 1, 2001 - Hi, I am new to this message board and not replying to any specific individual. My grandmother has CHF and the doctors keep telling us it us just a matter of time. I don't want to believe that, but she has lost some weight. Her appetite has decreased and she doesn't really want to do too much any more.
     My biggest concern however, is that she is complaining about chronic pain in her left side and we have been to specialist after specialist and they can't seem to find anything. She is in the emergency room at least once every 10 days because this pain becomes unbearable. Doctors have supposedly done urine tests (found nothing), blood tests (found nothing), bone density scans (found nothing). The emergency docs chock it up to arthritis but my grandmother has recently seen an orthopedic specialist who says that it is not arthritis. I am wondering if there is any relation to other CHFers who have suffered from mysterious, chronic pain on the left side of the body?
     Another frustrating point is that my grandmother has Medicaid and Secure Horizans. Apparently there is some sort of issurance regulation that stipulates Medicaid has to be considered secondary to any other insurance that an individual may have, and because of this it is very difficult to see certain doctors and the referral process seems like an eternity. Can anyone who has experienced this tell me what we can do to get Medicaid as primary, or get rid of Secure Horizons altogether?

Autumn's August 2 reply to Hasena Williams' August 1, 2001 - Hi Hasena, I can certainly emphathize with you on the insurance issue. I have a Blue Cross plan where I can only go certain places. It is primary. My Medicare is secondary. Thankfully I also get Medicaid, which picks up most of my meds and remaining medical bills. Having Blue Cross as primary creates a lot of problems since that plan so limits where I can go for medical care. I have gone "out of plan" occasionally but then I pay 40% of the bill myself.
     One time that I went out of plan Medicaid did pick up the tab but has informed me they won't again. I really feel I need to go to Mayo Clinic when I have heart surgery and to see a specialist about my respiratory problems but I can't get approval. I have not given up yet on that and may yet find a way. On one hand I feel very fortunate to have so much medical coverage but do wish my BC/BS plan were not primary.
     However, Medicaid does have certain limitations that my BC/BS plan does not. On my unpaid medical bills I can file a request for special compensation from a goverment established fund that has a certain amount of money allotted to it. When the fund is empty for that year there is no more help, and even if there are funds a person can be refused help. For me they make that determination on whether I've gone out of plan or not.
     Also, on request, that fund has agreed to pay part of my Medicare payment since I have so many medical payments due to going out of plan. You can request a hearing to switch who is primary, but personally I have found this unsuccessful. I do encourage you to keep checking. Even if you don't get all of what you want you may get something that may help you. Good luck, Autumn.

Susan B's August 2 reply to Hasena Williams' August 1, 2001 - Hi Hasena, Have you called the insurance commissioner in the state where grandmother lives? The insurance commisioner in my state even has a web site. Insurance companies are afraid of the insurance commisioner because the insurance company can be fined or kicked out of the state if the commissioner or commission office is unhappy with how the company is operating. Good luck, Susan.

Susan B, August 3, 2001 - Hi all, My husband told me that he would be one of the people to get much better in the first year and he put his money where his month was. Thanks to Jon and this web site, we got the information to push for higher doses of Coreg, rehab, and the CHF doc for my husband. Today, we got the results of his Vo2max test and the doctor told him that he can go back to work, and with supplemental O2 he can fight fires. I am not sure the city will let him go back to work and we need more information about just what the supplemental O2 means.
     The drugs are keeping his heart beat slow but he is feeling fine. He was at 65% of where someone his age should be according to the Vo2 test. However, his only echo in February of 2001 shows that his EF was 15% to 20% - another example of EF not reflecting how a person feels or is doing. In March of this year, he was turning blue just walking and had an O2 level of 81%. Now with drugs and rehab he is much better; well enough that he can fight fires.
     I know that he would not be doing this well without this web site, his hard work, and all the prayers. I just wanted to share some happy news. I'm not crazy about him fighting fires but he has my support. I don't know if he will get to go back since the last docs told the city that he would not be able to go back, but it is just good to hear that his heart will let him try. I know that he is not 100% back to where he was before and that he has to keep up the good work with drugs and rehab exercises. My husband told me he would be one of the people to get much better in the first year and he put his money where his mouth was. Thank you all for everything! Susan.

Roseanne S, August 3, 2001 - Hi All, Charles received his LVAD on July 30th. He is doing okay. He is a small man, so the HeartMate was a very tight fit. Currently he is experiencing stomach muscle spasms. The doctors say it is like having a charlie horse in your stomach. He is still on the ventilator but has been moved out of Open Heart Recovery. We are still 1A on the transplant list.
     A note on the Abiocor Implantable Replacement Heart recipient: When we were in open heart recovery, I was told by others in the waiting room that he is often seen in the halls on that floor, so he must be doing well. Roseanne S.

Sue, August 6, 2001 - Hi, I am not replying to any one message, just happy to find a place for me. My husband had a heart attack a year ago this month. He is doing very well, taking his meds, not smoking, eating properly, and exercising as much as he can. He is in his early 50s and never had any problems before his heart attack. His heart attack was caused by smoking, which he has successfully quit. He is working again but controlling his schedule according to how he feels. His worst complaint now is feeling so tired. His BP sometimes is 98 over 58 after he takes Digoxin (Lanoxin). After a few hours his BP goes back up to 110 over 70 and he feels so much better.
     It is so nice to find a place for me. I have a wonderful friend who is a nurse to talk to, but other than that, I feel as if I am alone in this. Reading other caregivers' concerns has really helped me see that I am not alone. I have all the fears of losing him too. He has asked me to quit treating him like a baby. I am trying but it is very hard to not nag him about exercising, eating, etc,... I am trying to let him control it himself. I purchased a pill dispenser, cook according to his diet, and exercise with him. I have felt more nervous this month since it is the anniversary month of his attack. I don't know if this is natural. Hopefully, it will pass. Thanks for all the wonderful suggestions.

Roy, August 7, 2001 - Hi, Do other people have difficulty knowing how to introduce themselves as much as I do? I must've typed and re-typed the opening sentence 10 times already! I discovered a few months ago that mum has CHF and since then have been trying to understand it as much as possible. I get very confused and a bit down about all the conflicting info and hope that this is a place where I may be able to provide and receive some support. I have loads of questions to ask and can hopefully also provide some answers too. It would be great to hear from anyone out there.

Kat R, August 7, 2001 - Hi, My significant other was diagnosed about 1 1/2 years ago with CHF. He has been doing fine and is still working but is now in a supervisory position. He is still in and out of the weather. He seems to do really well during the work hours but when he is ready to retire at night the pains set in. Does anyone know why the pains would come at night? Also, why do the pains seem to be occurring during rest? He is reluctant to go to the doc and he is doing so well otherwise. Could the extremely hot and humid weather we are experiencing be a contributing factor to this problem? Thanks, Kat R.

Susan B's August 8 reply to Kat R's August 7, 2001 - Hi, I wonder if your husband is working so hard during the day that he does not notice that he feels bad. I have some health problems that I just ignore during the day - most days - but at night I have no choice but to feel them because I have stopped running and thinking about 50 different problems. Working may make him happy and that could help him ignore the pains. The weather is making everyone feel like a wet dish rag. It is hard on people with many different illnesses, including CHF. Good luck to you and yours.

Susan B's August 8 reply to Roy's August 7, 2001 - Dear Roy, Although I have been writing a lot here, I re-write everything before I send it. It is hard to write to the whole world - you are not alone. Please start reading The Manual. Information is the weapon of choice in the battle with CHF. You must be able to understand the doctors and your mum. Jon has links to videos about CHF. You should watch them if you have time. They are very interesting, and they start at ground zero. (See this page)
     There is a lot of information here to take in and you are likely to be overwhelmed, which is normal. Everyone is overwhelmed at the beginning. There is also misinformation out there on the Internet (but I have not found any here), so take everything with a grain of salt. What we did was ask the nurse or doctor, "What about,...?" after we saw it on the web site.
     Even in this day and age doctors don't know everything and you have to ask why does or does not x, y, or z apply to this person's case. You need to check everything with a doctor you trust. Read the old reports - the treatment for CHF has done a 180. There are old (very old) studies that suggest bed rest for people with CHF. However, things change and information becomes outdated. The problem with the printed word (paper and Internet) is once something is written down it lives forever. Although the writers believed the words when they were written, the same writers may not feel the same way today. However, there is no way to go back and mark the line of thought as outdated. Medical information and knowledge changes every day as things are tested and studied.
     Take it slow, if at all possible. Read and ask the doctor. I carry around print-outs to underline and ask questions about whenever possible. My prayers are with you and yours, Susan.

Rachel, August 9, 2001 - Hi, I appreciate all the information on this web site. My son was diagnosed with dilated cardiomyopathy in 1994. He had a single ASD repair at 6 months of age. The DCM is from an unknown cause. He also has a dual chamber pacemaker, implanted at age 16.
     He will be 29 years old this month. His condition is beginning to get worse and he is having more syptoms of CHF. His electrophysiologist has recommended bi-ventricular pacing, which according to the surgeon would be high risk and no guarantee of improvement. If anyone is familiar with this procedure I would like to hear from you.

Jon's August 9 reply to Rachel's August 9, 2001 - Hi Rachel, Did he say why this might be high-risk? I have never heard biventricular pacing described as high-risk before, ever. Jon.

Roy, August 9, 2001 - Hello everyone, On Jon's Nutrient stew there's a an article Potential Interactions Between Alternative Therapies and Warfarin, which states that CoQ10 may lessen Coumadin's effect. Does anyone have experience of this? Is it more important to keep taking CQ10 and higher levels of Coumadin, or should I ask mum to stop taking the CQ10 which may result in her Coumadin dose being reduced? At present, mum takes 8mg of Coumadin and her INR is 1.06.
     I asked our consultant. He is unable to give an answer because he is unaware od the relationship between the two medicines. Thank you in advance for any ideas, thoughts or suggestions. My best wishes to you all, Roy.

Deidra, August 9, 2001 - Hi, Can someone please tell me how I can get my father to sleep at night? He won't sleep at all. He thinks that he still works and stays up from 12:00 PM until 5:00 in the morning. We get no rest. Let me give you some background.
     My father is 62 and this past December 23, 2000, he had his third open heart surgery. He got a staph infection, which led to endocarditis of the valves. He had a 10 hour surgery, which they told us beforehand he had only a 25% chance of surviving, but the Lord heard our prayers and spared his life. During all this he was in ICU for a month. He had a trach put in because his lungs weren't strong enough, his kidneys failed, and he was on dialysis, he had a pacemaker/ICD put in and his weight went to 143.
     We finally left Cleveland February 8, 2001, and took him to a rehab center. He was there until March 20, 2001, but had to be transferred to another hospital for fluid on his lungs but he finally came home on March 29, 2001. Now, his kidneys are fully functioning. We had problems with getting him to eat but he is eating and now weighs 163. He doesn't move around too much so he got a bile blockage and we are trying to walk him more.
     Our main problem right now is sleep. Can someone please tell me what we can do?

Lee R's August 9 reply to Rachel's August 9, 2001 - Hi Rachel, You might want to get another opinion on the biventricular pacing. My ICD/pacemaker is at the halfway battery life and we will be considering it for me when it is time. If my thinking is correct, the InSynch Trials would be a good thing to read. If I had a choice between a new heart and the synchronizing ICD/pacemaker, I would choose the ICD, but I'm sort of used to it being there. I hope this helps a little, Lee.

Mary Lou L's August 9 reply to Lisa Z's August 1, 2001 - Hi Lisa, Try and to see a list of pharmaceutical manufacturers who may be able to offer your dad some assistance with his meds. I hope it helps, Mary Lou.

Laura, August 10, 2001 - Well, it was one year ago today that I first heard the term "dilated cardiomyopathy." My husband was 42 and we have a 10 year old and 4 year old. John has recovered from an EF of 10% to an EF of 60% at his last echo 2 weeks ago. I just want to tell you Jon, thanks for this incredible site! It has given me so much information and so many people were here as support for me and John over this past year. His prognosis is excellent at this time and we have no reason to think it won't continue to be so. God's richest of blessings to you all! Laura.

Vivian G's August 11 reply to Roy's August 9, 2001 - Hello Roy, My husband is 80 years old and had bypass surgery in May of 2000. He has a-fib and was told he would always be taking Coumadin. They want to keep his INR between 2 and 3. The dietician told him to eat whatever he usually does and they will adjust his Coumadin dose to maintain the 2 to 3 INR. He takes CoQ10 and is on 4mg of Coumadin once a day. We really did not see much change in his INR when he started taking CoQ10. He did the pro-time test every week at first and now does one every 2 months. I had read about the contraindication of CoQ10 also, so was watchful when he started taking it. Just be sure to let the doctor know she is going to be taking CoQ10 regularly and to adjust the dose of Coumadin to fit.
     What INR did they say was ideal for your Mom to maintain? Please, watch your Mom for bruising or broken blood vessels on her hands or arms, which would be a sign that her blood is too thin. I am not a doctor, just a concerned wife watching over her husband. I hope this helps. By the way, I sent this message to the e-mail address posted on your message and it was returned as failed. Vivian Gudgell.

Davida's August 11 reply to Sharon B's July 19, 2001 - Hi Sharon, Check with your doctor regarding light hand-weight use. My husband is 36 years old and uses 3lb and 5lb weights. I read somewhere that building muscle strength helped with CHF. He also does leg lifts. He takes Theragram "Heart Right" vitamins every day and a 100mg Coenzyme 10. His EF has risen from below 10% in February of 2000 to 50 to 55% on his last echo in June of this year. He has days where he feels exhaused although I suspect his medications plays a large part with that. He mows the lawn and works up a sweat and takes his breaks when he needs them, all with the okay of his doctor. We also have a self-propelled lawnmower which helps. So he literally walks behind it for the most part. CAVALIER_1@MSN.COM

Davida's August 11 reply to Melanie's July 24, 2001 - Hi Melanie, I am blessed that my husband doesn't smoke and has no blockages. However, at 35 when diagnosed and married only 3 months, it was a very trying and emotional time in my life. I had fears of him dying before my eyes in the hospital. He was so depressed in the hospital he appeared to have given up and had no appetite or strength. There have been times since when he would not cooperate. With tears in my eyes I told him he was not going to force me to watch him die. I would leave him and divorce him before I was forced to suffer any further because of his selfishness; That, contrary to his belief, I was in this with him and it affected both of us as strongly but in different ways. I will pray for you to find peace with this. It is a heavy burden to consider what you are experiencing.

Davida's August 11 reply to Deidra's August 9, 2001 - Hi Deidra, Does your dad take naps during the day? If so, is it possible to keep him active enough to prevent these naps? Maybe his clock will be reset and he will want to sleep at night, but it sounds like his clock is off and he is in a routine now. One or two days of all day awakeness may help him reach for his bed sooner at night.

Loretta, August 13, 2001 - Hi, My husband was diagnosed with CM and CHF 5 years ago and was did very well until recently. We live in a small town and most people go elsewhere for medical help. The local cardiologist was unimpressive. After an ER bout with breathing problems, the PCP said it was not his heart, but asthma, and treated him for several months for this. Recently we went out of town to an ER and he landed in the hospital with CHF. We thought we'd find a progressive cardiologist here but were made to feel as if we were bothering him. He sent us home from the hospital with new meds and no directions. When I called his office, he said he didn't know what was wrong with "you people." This is the worst time not to have a caring doctor. If anyone has a recommendation for a CHF doctor in the Lake City, Florida area, I would be so very grateful.

Hanna, August 13, 2001 - Hi, My husband went for an echo 2 weeks ago, then to his cardiologist for the results. The results show 4 chamber enlargement but he didn't seem to be too concerned about it. This nightmare has been ongoing for 6 years now. I was told in the beginning that my husband had "bad lungs" and that he had suffered heart failure. Now they say the bad lungs means he has emphysema and the cardiologist says he really doesn't have heart failure; he just has the symptoms of it (edema) but his problem is that his heart cannot get blood from his lungs. He said that my husband has heart failure but he doesn't. I am so confused.
     He takes 160 to 240mg Lasix per day plus zaroxolyn every other day or every day if needed. He eats potassium pills by the handful - he is now up to 30 per day to keep his potassium levels at 3.8. Confusion reigns. Can someone make sense of this for us?

Jon's August 13 reply to Hanna's August 13, 2001 - Hi Hanna, I doubt that I can explain everything you would like to know but maybe this will help, maybe not. It sounds to me like his pulmonary pressures are low. These are the pressures inside the blood vessels of his lungs.
     It is actually pressure that propels blood throughout the body. The heart's pumping strength pushes blood out into the body. However, it's the lungs that "send" blood into the heart in the first place, after mixing it with fresh oxygen from the air you breathe in. If the lungs cannot get that blood to the heart, you would indeed have all the usual heart failure symptoms even though the heart may not be damaged - it just isn't getting the "fresh" blood it needs to pump out. It can't pump what it doesn't have.
     This is a very simplified version of a complex set of actions, but maybe it will help. I had a page about normal heart function but no one ever read it so I took it down. <g> Seriously, you definitely need to get a doctor who will sit down and explain all the ins and outs of your husband's condition with you. Jon.

Katie's August 14 reply to Roseanne's July 26, 2001 - Dear Roseanne, I have share some of your experiences. My husband was 1A for 2 years. He was listed in Tucson, Arizona. Having sharing time in the hospital and waiting room with other spouses, we all agreed: always work with those caregivers. They are very influential with the doctors regarding who stays on the list and those who are off for a week.
     At our hospital, attitude was evaluated weekly for the UNOS list. My husband was a type A personality. He would express his true feelings about the food, cleanness of the facility, and he questioned staff, even doubting if they were being truthful that a donor heart could come any time. He would question if they were keeping him too dry, and as you know by now it is a fine balance. We saw many patients come and go with new hearts or being put on the CardioWest heart. They all did very well. There was a very short period of time at the hospital where they did 7 hearts in a row but none came for his size, or of the type for him and that was hard to take, even though you're happy for your fellow man. It got very discouraging.
     I really feel that his outward type A personality got him through the long wait. Two years on the beeper and lot of it in the hospital, waiting went by so quickly now that I write about it. During that time my husband was able to be himself - joke, complain, and he even got his food choices special cooked. We were blessed during that time. We built memories, and made many new friends that are now lifelong friends. His condition kept getting worse and eventually he went on the CardioWest heart and developed complications but he never gave up hope for a donor heart or lost his strong personality. After surgery he still joked but enjoyed the nutritious shakes he received.
     Roseanne, may God send your husband his new heart soon. I will keep him in my prayers. You keep telling him how much you love him and let him be himself. I don't think I could of stood it if my husband's personality had changed. That was something I wonder about when he received the artificial heart. Would he be himself after surgery? He was.

Roseanne's August 15 reply to Katie's August 14, 2001 - Hi Katie, Thanks. It helps to know someone else has walked in your shoes, Roseanne.

Andrea J, August 16, 2001 - Hello to all, This site is wonderful - it's been a godsend for me. My mom got her new heart in January of this year. I've come out here many times when I couldn't sleep just to look up things like meds, reactions, etc,..., just so I knew I wasn't alone.
     Well, I'm proud to say that Mom is shining like a new penny these days. She went to a wedding in June, and was dancing! Tonight she's taking her belated anniversary gift, a cruise on board the Odyssey out of Boston for a dinner cruise with my dad. Her last biopsy came back 0 rejection! I'm here to tell you that prayers work. I'll gladly offer up prayers to anyone that wants or needs them, and am more than willing to share my experience - looking from the outside in, so to speak. I don't get easily embarassed so ask away! I've been keeping a journal and am considering having it published. Keep the faith and hang in there. Love to all.

Roseanne S, August 16, 2001 - Hi, Does anyone have any experience with VRE?
Jon's note: What is VRE?

Kathy, August 16, 2001 - Hi, My husband was diagnosed with DCM in September of last year, at which time his EF was 25%. He has been on 10mg Zestril BID since diagnosis and was eventually started on Aldactone (spironolactone) and Toprol XL. He has been having a lot of swallowing problems and underwent an endoscopy today, which did not reveal any underlying disease. The doctor came in and told us he needs to be sure and chew his food up, etc. However, we have told the doctor and continue to tell the doctor that it is also liquids and saliva that give him problems.
     This happens every day several times a day and we are very frustated. We have wondered if the medications are causing the problem. Has anyone else experienced this? Initially we told the cardiologist about this and he felt it was esophageal but now that nothing seems to be showing up, we are left wondering. Any insight would be much appreciated. Thanks, Kathy.
Jon's note: Please strongly push the cardiologist to replace the ACE inhibitor with an ARB to see if this improves the problem. This could be angioedema - a very serious ACE inhibitor side effect!

Roseanne S, August 18, 2001 - Hi Jon, VRE is Vancomycin Resistant Enterocci. If I am understanding what I am told and have been able to find on the Internet, it is one of those super bacteria that have mutated to be resistant to antibotics. Information, precautions and so on seem to vary from caregiver to caregiver. Most of them say it is more a nuisance than a real problem. You usually see it when someone has been in the hospital a long time and on a lot of antibotics. One nurse said Charles probably got it from it one of the 3 hospitals he has been in over the last 10 weeks. My understanding is that once you test positive, you are always a carrier, and will always be in isolation at the hospital. I would appreciate any insight anyone has about VRE. Thank you, Roseanne.

Patricia, August 18, 2001 - Hello, I hope someone can help. My mother was diagnosed with heart failure in August of last year and this past July she had a heart attack. She needs to find a cardiologist as soon as possible since the one who treated her doesn't see patients outside the hospital. Dr. Marshall and Dr. Hopkins of the Delaware Heart Group were recommended to her. Does anyone's family member see either of these cardiologists and if so, how are they? Do they take time with their patients and family members, and do they take their patients seriously? I would appreciate any information or suggestions. Thanks, Patricia.

Joyce S, August 18, 2001 - Hi all, I am so lucky to have found this web site. My best friend was diagnosed with cardiomyopathy in early March. He has been at times angry and depressed. A well intentioned co-worker gave him a book (over ten years old, I should add) that said most cardiomyopathy patients don't live more than 5 years from diagnosis. He was ready to give up. I didn't know how to argue with this. I told him if he follows his doctor's advice, watches his diet, exercises and takes his medicine, only God could tell him how long he would live. This web site is full of so much good info. Jon, God bless you for making this your labor of love.
Jon's note: I was persuaded to do so. <g>

Mary T, August 18, 2001 - Hi folks, Does anyone have any suggestions about dealing with the heart cough? It is not caused by ACE inhibitors but rather by the size of the heart muscle and retained fluid. Thanks, Mary.

Roseanne S, August 20, 2001 - Hi, A note on SSD: For some reason we were blessed and ours went through first try with no lawyers. I did get our Congressman involved quickly. I got a letter from the claim reviewer asking about Charles' normal activities. When I called to tell her he had been in the hospital 6 weeks and was going to have a LVAD, she said they would put him on a 3 month medical hold. She asked me if he had gotten worse because from the information she had he was not that bad, even though 2 doctors had filled out the information saying, "This man will never work again." She commented that she did not understand what the problem was since 2 of her brothers had heart attacks and returned to work in 3 months. At that point I contacted Representative Baron Hill through his congressional web site. I got an e-mail the next day telling me they would contact me in writing and a phone call from his office. I filled out a form authorizing them to look into the matter. I received a phone call 2 days later from his office explaining medical hold to me. Then I got a letter from Representative Hill telling me he had contacted the SSA office and would follow up. In less than a week I received a phone call from the SSSA office telling me we were approved. I don't know if this will help anyone else, but it worked for us. Good luck to all, Roseanne S.

Roy, August 23, 2001 - Hi, I just wanted to ask for support and advice. Mum has CHF and was admitted back into the hospital last week. Fluid built up in her tummy and had to be drained. The consultant said that her heart output is 12 to 13% when it should be 65%. She is now taking 3mg warfarin, 75mg aspirin, 25mg Aldactone (spirinolactone), 80mg furosemide, 2.5mg bisoprolol and 4mg candesartan. Is there anything else we can do to increase her heart output and her standard of living? Can heart output be improved? The consultants keep saying how serious this all is and I am desperate to do anything that can improve mum's condition. Thank you for listening and best wishes to everyone out there, Roy.
Jon's note: have you read The Manual yet?

Deborah L, August 24, 2001 - Hello, I just found Jon's Place. I called my boyfriend immediately to let him check it out. He is 46 and was diagnosed with CHF in April. His EF is 10%. I have learned so much already just by reading The Manual and the posts from everyone. I have been looking for someone to talk to. Since this has happened to us, we have been struggling with bills and SSD, doctors have said he cannot work and SSD says he can. Anyway, I think this is a great site and I hope he will visit it too.

Davida's August 24 reply to Roy's August 23, 2001 - Hi Roy, I am sorry to hear about your mum. They are very special people. The most important thing is to reduce the fluid buildup and it appears that's what they are doing. A reduction in fluid will keep the heart from working so hard. Most importantly, pray for her and for guidance for yourself. Keep her spirits up although she may feel down at the moment.
     As Jon suggested, read The Manual. It was a tremendous help for me when my husband was diagnosed with CHF. Heart function has been known to improve as many people on this site can attest. All cases aren't the same but you need to feel comfortable with the level of care she is receiving. The Manual explains some of the tests and experiences involved with CHF. Encourage her to take all of her meals in the hospital - she has to keep her strength up.
     Once home, get mum to move around as much as she is capable of doing. Check with her doctors about what is expected from her regardingactivity. Watch all salt intake. Take nothing for granted, not even a glass of milk. Keep track of her salt intake by reading labels and giving recommended portions. Encourage lots of no-salt or low-salt meals and snacks. This will keep the fluid off her and give her heart the opportunity to recover from this setback. To what degree her heart will recover only time will tell.
     Everyone is different. My husband went from an EF of 5 to 10% in February of 2000 to 50 to 55% as of June this year. I will pray for you both. Hang in there. I know the anxiety you may be feeling. Most of us that post on this side have experienced the highest levels of anxiety possible and do so daily. Even when things are at their best, you still worry. Take care of yourself. You are no help to her if you run yourself down. Good luck.

Susan B's August 24 reply to Roy's August 23, 2001 - Dear Roy, We all understand how hard it is to get a handle on CHF but please take a deep breath and slow down. You are lacking information. Again, I beg of you, please read The Manual. Start anywhere, but please start reading it. If you cannot sit still long enough to read it then watch the videos which are linked to this site (click on the Healthology link at top left of this page). The doctors on the videos will spell out helpful suggestions. Write them down and ask your mum's doctor. Every case is different so you should ask the doctors if x, y, or z will help her. My husband is much better because of the meds and rehab. Please ask the doctors if rehab will be helpful to your mum. If so, then ask when it should start. Check with your insurance company about the details.
     CHF is hard to deal with so you need all the info you can get in your head. Read The Manual! There are no short cuts. To get the most for you doctor visits you must understand CHF. Then ask questions and keep asking questions. Please understand that you need to get all the info you can so that you can understand the doctors, and the dos and don'ts for your mum.
     I am worried about you. You need to take care of yourself and not get run down. Please be good to yourself. Please take care and you and your are in our prayers. Thanks Jon, for all of the info on this site.

Lisa Z's August 24 reply to Mary Lou L's August 9, 2001 - Hi Mary Lou, Thank you so much for the information about assistance with medicine costs. I have passed the information on to my mom and she is doing some additional research for specific medications. It is hard to believe how expensive they are, but such a necessity. I hope all is well with you. Thanks again for the info.

Deborah L, August 27, 2001 - Hi, I need some help. I am trying to get a handle on cooking for my boyfriend Rick. I know he is supposed to watch his salt intake. We have given up the salt shaker but I know that is not enough. I have checked out the recipe section and it is a lot of help but also looks like a lot of work! Does anyone know how much sodium is the recommended amount for the day? I am also having trouble helping him control the amount of fluids he drinks in a day. He complains of being thirsty all the time. Rick thinks that because he has been outside and he sweats a little that he has to replace that fluid immediately. The doc has not really given us any guidelines except to "watch fluid and sodium intake." If anyone can give me some tips, that would be great. I hope everyone is doing well.

Jon's August 27 reply to Deborah L's August 27, 2001 - Hi Deborah, First, kick his doctor in the shins for being so vague. A "usual" sodium intake restriction is 2000 mg (2 grams) per day. A "usual" fluid intake restriction is 2 liters per day. That varies, however. On the recipes, unfortunately, a low sodium diet does require cooking, not eating a lot of packaged foods. Sorry. Jon.

Karen D's August 27 reply to Deborah L's August 27, 2001 - Dear Deborah, My husband was also told to stay under 2000 mg sodium per day and under 2 liters of liquid, just as Jon's post says. When he was first diagnosed, I thought it was going to be really, really hard to feed him but after a couple of weeks it got easier.
     You will have to read the nutrition labels on every can and box that you buy in the grocery store. I kept a chart for the first few weeks and wrote down the sodium content of every bite that Bill put into his mouth, as well as the fat, cholesterol, and amount of liquid that he was consuming. After awhile both of us became familiar with what was in the foods and didn't have to write everything down any more.
     One thing that helped was that if I fixed a particular meal, I could write down the total sodium grams for that whole meal, so next time I already had the total. Fast foods are pretty much out from now on but once you get used to it, you can fix enough to freeze some to reheat later on. If you have a crockpot, you can start something in the morning and have it ready to eat when you come home from work.
     There are low sodium products available through the Healthy Heart site (run by another man with CHF), and I am finding more and more low sodium foods available in the grocery store, such as Del Monte and Hunts, which have lines of "no salt added" canned vegetables. I'll be glad to help in any other way I can. Good luck, Karen.

Peggy's August 29 reply to Joyce's August 18, 2001 - Hi Joyce, Tell your friend that his attitude is very important in order to make it through this! My husband was diagnosed with cardiomyopathy and CHF last November. We had also read that within 5 years he probably would be dead. It sure makes a person scared to read that. They also didn't think my husband would return to work at all. He was out of work for 7 months and was put on many different meds. His heart was really enlarged and he was in a-fib. The first night in the hospital he lost 10 lbs of fluid. They said he would not have made it through the night if he had not been admitted to the hospital.
     He has a great attitude every day. In fact, he kept my spirits up because I am the one that had the attitude. He was put on Coreg and Zestril, and has had very good luck with both. In May he had an echo and his heart is almost back to normal. his EF went from 25 to 60% in 6 months. Of course, we changed everything in our life to the good and kept it up.
     Tell your friend it's not all doom and gloom, but the attitude has to change! My husband's been back to work now for 5 months and is doing great and feeling wonderful. Good luck and God bless!

Kat R, August 30, 2001 - Hi, My significant other is experiencing shortness of breath but says there is no chest pain. This has been going on for awhile now. I suggested that perhaps there is fluid build up on the lungs and perhaps he should take a diuretic that was prescribed by the doctor. He is popping nitro tablets a lot, up to 7 within a period of 5 to 6 hours for pain that he gets occasionally in his left shoulder. The two are not necessarily happening at the same time: the shortness of breath and the pain. He will not see a doctor right now. He is hoping that when the weather is cooler and less humid he will feel better. I feel helpless in all this.
     Anyone who lives in the nothwestern suburbs of Minneapolis, it would be great to hear how you are coping with all of this. My former husband (deceased) had CHF also but he was alcoholic and I think the alcoholism kept him from "feeling" the symptoms. Any help would be appreciated, Kat.

Carolyn S, August 31, 2001 - Hi everyone, It's been awhile since I've posted. My husband is doing well. I suppose that means his CHF is in check for now. Recently we read in the papers of a new therapy for CHF patients, a novel pacemaker-like device that could help their hearts beat more normally. It boosts the heart's pumping power. The technique is called cardiac resynchronization. Cardiologists think it could help advanced CHF patients who haven't been helped by the best medicine we have today. InSync system is the name of the device made by Medtronics in Minneapolis. It may be worth looking into for some of you. Good luck to you Jon, CHFers and caretakers.

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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