The paperwork never ends The Archives
Loved Ones - March, 1999 Archive Index

Bill D's 3-1 reply to Anna F's 2-27      treatment, transplant & more
Bill D's 3-1 reply to Judy's 2-25      country, hospital, doctor questions
Bill D's 3-1 reply to Anne's 2-25      hospice care
Bill D's 3-1 reply to Julia L's 2-25      Ambien possibilities
Tandy K's 3-1 reply to Carolyn B's 2-28      similar situation - would like to e-mail
Donna T 3-1      transplant/right heart pressure questions
Donna S 3-1      have MS now, what next?!
Virginia R's 3-1 reply to Karen P's 2-22      draining extra fluid
Virginia R's 3-1 reply to Jon's 3-1      thanks, Kathy J & her mom, & more
Al H's 3-1 reply to Julie L's 2-25      anxiety, appetite, meds & more
Annie G 3-2      Virginia R, enzymes and MI, & more
Nina Straw's 3-2 reply to Donna S' 3-1      MS possibilty, coping
Donna T 3-2      Capoten is the med name
Sherrel Lawson 3-2      mom has CHF, benefit from site
Rachel 3-2      prayer request
Carol ? 3-2      questions about husband's CHF this time around
Caroline S 3-3      questions about mom's Elavil & more
Jon's 3-3 reply to Caroline S' 3-3      my Elavil experience
Jon 2, 3-3      update, amiodarone questions
Bill D's 3-3 reply to Carol ?'s 3-2      CHF info, answers & more
Deb J's 3-3 reply to Donna T's 3-1      right heart pressures & more
MaryAnn 3-3      mom has CHF, vitamin E & more
Jon's 3-3 reply to MaryAnn's 3-3      vitamin E & CHF
Barbara ? 3-3      questions about drinking, smoking & Coreg
Kris 3-3      questions about nursing home care problems & more
Jon's 3-3 reply to Kris' 3-3      doctor's orders
Karen P 3-3      insurance & Medicare questions
Bill D's 3-4 reply to Jon 2's 3-3      amiodarone, palliative care
Cheryl 3-4      desperate for advice on coping/straight talk
Deb J's 3-4 reply to Bill D's 3-3      transplant outlook
Jon's 3-4 reply to Cheryl's 3-4      a few questions
Merry M 3-5      The Manual, some questions
Jon's 3-5 reply to Merry M's 3-5      digoxin, other meds, heart class
Gus R's 3-5 reply to Kris' 3-3      wheelchairs & nursing homes
Virginia R's 3-5 reply to Kris' 3-3      wheelchairs & nursing homes
Gus R's 3-5 reply to Karen P's 3-3      Medicare & health insurance
Joan K 3-5      awakening with tight throat question
Bill D's 3-5 reply to Deb J's 3-3      oops
Sharon S' 3-5 reply to Jon 2's 3-3      amiodarone info
Mandy S 3-5      mom just diagnosed, what now?
Jon's 3-5 reply to Mandy S' 3-5      first step
Katherine J 3-5      thanks & a transport question
Dina R 3-5      intro, driving & dizziness
Jon 2's 3-5 reply to Bill D's 3-4      update, options & more
Cheryl's 3-6 reply to Jon's 3-4      more info, happening fast
Jon's 3-6 reply to Cheryl's 3-6      drugs, info, support & more
Merry M's 3-6 reply to Jon's 3-5      confusion, meds & more
Jon's 3-6 reply to Merry M's 3-6      info & support
Joan K's 3-7 reply to Katherine J's 3-5      possibilities
Joan K 3-7      husband's throat/sleep problems - questions
Anna 3-7      husband's swelling, doctors - questions
Jon's 3-7 reply to Anna's 3-7      maybe others can answer the rest
Tandy K 3-7      Medicaid questions
Deb J's 3-7 reply to Joan K's 3-3      anxiety attack a possibility?
Bill D's 3-7 reply to Katherine J's 3-5      asking around
Bill D's 3-7 reply to Jon 2's 3-5      Ticlid, side effects & more
Deb J's 3-7 reply to Jon's 3-4      cyclosporin
Jon's 3-7 reply to Deb J's 3-7      paranoia can happen on this end
Cheryl's 3-7 reply to Jon's 3-6      diuretics, aspirin, sleep & more
Hanna 3-7      intro & questions
Gloria M 3-8      Ace inhibitors & kidneys questions, what to ask & more
Gus R's 3-8 reply to Hanna's 3-7      bleeding, docs & more
Jon 2's 3-8 reply to Bill D's 3-7      update, Ticlid, doctors & more
Wendy 3-8      dad has enlarged heart - questions
Candy's 3-8 reply to Hanna's 3-7      encourage husband, coping & more
Bill D's 3-8 reply to Joan K's 3-7      episodes, nitro, info & more
Bill D's 3-8 reply to Anna's 3-7      CHF clinics
Bill D's 3-8 reply to Hanna's 3-7      compliance & life span & more
Carolyn B 3-8      is digoxin use common? & more
Joan K 3-8      seek device info
Tracy 3-8      dad's itching, seek therapy info & more
Jon's 3-8 reply to Tracy's 3-8      possibilities
Susan 3-8      how to ease breathing?
Katherine J 3-8      update on mom
Hanna 3-8      more info, Candy, Gus & Bill
Bill D's 3-8 reply to Tandy K's 3-7      maybe attorney could help with Medicaid
Bill D's 3-8 reply to Carolyn B 3-8      digoxin
Bill D's 3-8 reply to Gloria M 3-8      leaky valves, EF & more
Tricia H 3-9      update, seek advice, wheelchairs & more
Mandy's 3-10 reply to Jon's 3-5      thanks, pneumonia question
Katherine J 3-10      my mom has decided to let go life & more
Jon 3-10      Mandy, Katherine & my forms
Katherine J 3-11      my mom died today
Anna's 3-11 reply to Mandy's 3-10      CHFers' immune systems
Candy's 3-12 reply to Anna's 3-11      infections, colds, vitamins & more
Jon 2's 3-13 reply to Katherine J's 3-11      condolences
Jon 2 3-13      update
Joan 3-13      husband getting worse fast - questions
Dina Rice 3-13      update on John, a-fib questions
Jon's 3-13 reply to Dina Rice's 3-13      a-fib recurrence
Tricia H 3-13      mom's diuretics & potassium, & more - questions
Jon's 3-13 reply to Tricia H's 3-13      diuretics, potassium & more
Annie G's 3-14 reply to Joan's 3-13      quick deterioration
Joan 3-15      update, questions & more
Candy's 3-15 reply to Tricia H's 3-13      potassium possibility
Gus R's 3-15 reply to Dina Rice's 3-13      a-fib info & resources
Bill D's 3-15 reply to Joan's 3-13      shortness of breath, meds & more
Marion M 3-15      prayer request
Stefanie V 3-15      taking care of mom, advice appreciated
Virginia R's 3-16 reply to Joan's 3-13      thinking of you, update, questions
Robbie 3-16      thank you & some questions
Allan M's 3-16 reply to Dina Rice's 3-13      a-fib experience
Hanna 3-16      enlarged heart questions
Candy's 3-16 reply to Stefanie V's 3-15      personal CHF coping experience
Lee R's 3-16 reply to Stefanie V's 3-15      a-fib, coping, puppies & more
Carol 3-16      intro, stomach pain questions & more
Joan's 3-16 reply to Stefanie V's 3-15      coping, support & more
Joan 3-16      thanks, diuretic question, update & more
Jon's 3-16 reply to Joan's 3-16      drug possibilities
Holly 3-16      chest pain in young children questions
Annie G's 3-16 reply to Dina Rice's 3-13      a-fib & conversion
Bill D's 3-16 reply to Carol's 3-16      hiatal hernia a possibility
Mary 3-17      age, EF & improvement, & questions
Candy's 3-17 reply to Carol's 3-16      stomach pain possibilities
Tina 3-17      update, questions about thumping in head
Deb J's 3-17 reply to Carol's 3-16      upper stomach pain
Bill D's 3-17 reply to Tina's 3-17      thumping possibilities
Bill D's 3-17 reply to Mary's 3-17      CHF info, a-fib & more
Susan Rose 3-17      swelling & diuretics questions
Virginia R 3-17      update, prayer request, Tina
Trica H's 3-19 reply to Candy's 3-15      update, meds, doctors & more
Carol 3-19      update, hospital questions & more
Candy's 3-19 reply to Susan Rose's 3-17      hospital social worker & other possibilities
Ruthie A 3-19      update on mom, losing a parent & more
Jon 3-19      I'm behind, patience please
Anna's 3-19 reply to Carol's 3-19      upset stomachs, CHF & meds
Tina Deibel 3-19      Bill, Virginia, & more
Bill D's 3-19 reply to Susan Rose's 3-17      doctors, Medicare, hospice & more
Jon2 3-19      good update on mom & more
Dina Rice 3-19      pacemaker questions, update & more
Jon's 3-19 reply to Dina Rice's 3-19      pacemaker page & EPS/RA
Candy's 3-19 reply to Tricia H's 3-19      hang in there
Lee B 3-19      CoQ10 questions
Lyliss 3-19      intro, Batista questions & more
Carol 3-20      Anna, Lyliss, Jon & some questions
Tricia H 3-20      update, education pays off! & more
Carol 3-20      definitions questions
Bill D's 3-20 reply to Lyliss' 3-19      Batista procedure information & more
Pearl's 3-20 reply to Jon's 3-19      love this site, intro & more
Caroline S 3-22      my mom died & more
Jon 3-22     forms back up, taking a break
Rita 3-22     seek a-fib info
Carolyn B 3-31     update on my 12 year old daughter
Kris 3-31     SSI/conflicting doc stories questions
Charlotte 3-31     coping, husband on Coumadin & more
Candy's 3-31 reply to Kris' 3-31     find a new doc
Dan B 3-31     2 year old with cardiomyopathy - anyone else?
Susan Rose 3-31     feel helpless, meds questions & more
Jon's 3-31 reply to Susan Rose's 3-31     possibilities
Deb J's 3-31 reply to Kris' 3-31     find a new doc, SS & more

Bill D's March 1 reply to Anna F's February 27, 1999 - Hi Anna, I can understand your frustration. Are there any other doctors you can see? Is there a CHF clinic in your area? Actually, that "student doctor" may be doing you a favor! Being referred to a transplant team assures your husband of the best care there is. Those guys main job is to keep you well enough so you don't need a transplant. They do the same things the doctors do at a CHF clinic. There are not enough hearts to go round and the doctors are embarassed when their patients die waiting for one. That's why they take such good care of you! Bill, a CHFer.

Bill D's March 1 reply to Judy's February 25, 1999 - Hi Judy, I'm puzzled as to what country you're in. Most patients as bad off as that would call 911 and get carted off to the Emergency Room. From your description, the reason she has to sit up and can't sleep is because her lungs are filling with fluid. She needs a diuretic in an IV to get it out. Why are they calling the doctor for her? What can he do over the phone? Perhaps Gus has made the best suggestion. If she's near the end and suffering, ask the doctor why he isn't sending her to hospice? Bill.

Bill D's March 1 reply to Anne's February 25, 1999 - Hi Anne, Nobody can predict when a CHFer will die or how many times they will rally. Too little blood flow eventually affects all the organs, liver included. I went to the Central Florida Hospice Web site. They answer questions, mostly from nurses giving hospice care at home. I noticed all the questions seemed to be about patients with cancer and none for patients with CHF. So I asked why didn't I see more CHF questions if more people die with CHF. My answer was: "Doctors can't predict when a CHF patient has 6 months or less to live." I would ask her cardiologist if he's ready to recommend hospice? His answer should give you what you want to know. Bill.

Bill D's March 1 reply to Julia L's February 25, 1999 - Hi Julia, Ambien, (zolpiden), can be a dangerous drug for older people. His liver and kidneys may not be up to getting all of it out of his system and it builds up. Side effects can include depression and anxiety. It also leads to dependence. I'd try to ask him to get off the stuff. I have a good friend your father's age and Ambien screwed him up proper. His name is Hilary and his e-mail is It put him into the hospital with clinical depression. Bill, a CHFer.

Tandy K's March 1 reply to Carolyn B's February 28, 1999 - Hi Carolyn, I have a 13 month old son with DCM and CHF, and would very much like to talk to someone who has a child with this also. Luckily for everyone else, there are not many that I have found. E-mail if you are so inclined. Continue on Sir Jon and family, you are in my prayers. Tandy, Mom of Brandt - age 13 months, EF 40, FS 18, and 3 other boys.

Donna T, March 1, 1999 - Hi, My husband's case is being presented to the transplant committee this week. Everyone is confident that he will be listed, he has much on his side. His age is 48, his blood type is A-, his size is small and he is a compliant patient. He also has some potentionally big items against him. He has peripheral artery disease in his legs but they have grown capillaries bypassing the blockages. The major biggee is that he has high right heart pressures. He just spent a day in CCU on IV drugs to lower the pressure to a normal range. The consensus is that once lowered, his regular meds would be able to maintain the pressure. Does anyone have any information on right heart pressures? Also, the meds Gary is currently on are, according to the docs, pretty much at max. He is on 12.5mg Coreg twice a day, 100mg Capoten 4 times a day (Jon's note: this was written as Capton - I am assuming it to be Capoten despite the dose), 25mg Hydralazine 4 times a day, Coumadin, Lipitor, 100mg Cordarone a day, Digoxin, and Xanax. Any info would be appreciated. Donna.

Donna S, March 1, 1999 - Hi, This is Donna S again. I tried to take your advice and not worry about my symptoms. My doctor suggested I go to the ER because my symptoms progressed to leg and arm tingling and weakness. I had the flu a couple of weeks before and he was afraid it was a post-flu syndrome that needs immediate attention. Well, it wasn't, and after eliminating many different areas, the doctors have come to the conclusion that I have Multiple Sclerosis. It is the last thing they are testing for. I need an MRI to confirm the diagnosis. My dad just got out of the hospital with heart failure last month and now this. I guess soon I will need a support group for myself. I hope there is one as good as this. I know I need the test result in order to say for sure. I'll hope for a miracle until then. I hope you're doing well. Donna S.

Virginia R's March 1 reply to Karen P's February 22, 1999 - Hi Karen, They gave Dad Lasix in the arm at the hospital. It worked right away. He felt so much better with the fluid off. I think if you check the other side of the forum, maybe in The Archives you will see Jon's response about "hospital draining." I think it's easier for the heart to work if it doesn't have to pump against extra fluid. Also, some medications absorb better when there isn't extra fluid. I wish you both well.

Virginia R's March 1 reply to Jon's March 1, 1999 - Thank you, Jon. I hope you aren't wearing yourself out with so much going on in your family. I appreciate your personal response. I heard from Kathy J, whose mother had bypass and had to go on dialysis. Her mother does not appear to be doing well at all. Please remember her in your prayers. I know that she would appreciate it. She's still working and taking care of her mom. It can be a lonely job sometimes.

Al H's March 1 reply to Julie L's February 25, 1999 - Hi Julie, As Bill D said, your father could become dependant on Ambien within a short period of time. I am not as versed in the side effects as Bill, but he knows his meds and friends very well. It sounds like your father may need something like Xanax (generic name: alprazolam) to help him calm down. His anxiety may be due to depression which can be common with us CHFers. You can check this site for some pharmacy info: on the drugs you mentioned. Remember those here are not doctors, just patients. My father went through these same stages. He would be starving, we would get what he asked for but his appetite would be gone. He always wanted mom to be there but due to health reasons, she could only see him certain times of the day. His anxiety would leave when she arrived but return when she left for the day. Your being 3000 miles away certainly has to be taking its toll on both of you. Al H.

Annie G, March 1, 1999 - Hi all, Virginia, In response to your questions about the enzymes indicating a heart attack, you are right. The problem lies with the timing. The old way to prove a heart attack was by the changes on the EKG, the symptoms, and the enzyme changes that followed a pattern over 3 days from when the symptoms started. The initial change in these enzyme levels plus the EKG data were usually pretty conclusive. In the last 2 years, a new blood test is being used that can indicate heart damage in a matter of hours from onset of symptoms, and is felt to be very accurate. Because your father didn't see a doctor right away in August, there is no accurate way to tell when his heart attack occured. Usually at this point a doctor can tell from the EKG that a heart attack occured sometime since the last EKG was done. He has no way of telling when it happened, just that it happened. The enzymes usually only stay elevated for 3 days for the old ones, and about one day (if I remember correctly) for the new ones.
     I have been reading these posts since December when my 46 year old husband was discharged from hospital after being in class 4 heart failure. He had just been diagnosed in November and we were waiting to see the transplant team on an outpatient basis when he got too sick. This has all been a bit overwhelming. I am a registered nurse who had just transferred after 5 years on a cardiovascular telemetry unit. Even I didn't know what I needed to about CHF and I took care of those people all the time. It's sure different from this side of the bed! I have learned a great deal and think this is a wonderful site. Now that I have gotten over the initial posting fear, I'll post again and keep reading.

Nina Straw's March 2 reply to Donna S' March 1, 1999 - Hi Donna, I read the posts every day and had to share with you an article that was posted at my job. It was written by Nancy Markle and is from the World Environmental Conference and the Multiple Sclerosis Foundation. It states that people who ingest an excess of Aspartame can become methanol toxic and this toxicity mimics Multiple Sclerosis. This can occur in people who drink Diet Coke and Diet Pepsi and drink 3 - 4 12oz cans a day. I am not a medical person, so I could send you a copy of the article if you e-mail me your address.
      I also wanted to share that my Mom was diagnosed with CHF in 1997 and I lived 1500 miles away and it was tough. When I found out she had stopped cooking and was eating her meals out of cans, I told my husband I had to move near her. Three months ago, we uprooted and moved 4 doors down from Mom. It has changed her feelings about life, and she is much more content now. Everything has changed for the better. The move put us into incredible debt but it is on the list of "what's important in life." Family is at the top of the list.

Donna T, March 2, 1999 - Hi all, Jon, you are correct. The medicine is Capoten.

Sherrel Lawson, March 2, 1999 - Hi, As we speak, my mother is in the hospital with CHF. This is not the first time but this is the first time I have looked on the Internet for information. I am glad that you have made this Website, Jon. It is heartening (no pun <g>) to see what others have written here. I thought the leg inflammation of my mother's leg was some kind of rash, not indicative of CHF, and was totally ignorant about fluid build-up. My mother had a left-side stroke about 2 years ago and since then, through God's benevolence, has made a great recovery and gotten back the use of her right side, albeit weak. Since the stroke, she has developed this CHF. Anyway, I am glad that others have taken their time to write and by writing, have encouraged me, and her. Thank you.

Rachel, March 2, 1999 - Hi, I am writing because I know there are many prayerful people who read this list. I have a dear friend whose husband was just diagnosed with an oddball type of lung cancer that has already spread to the bone and liver. They have 4 children, and the oldest is only in 4th grade. Please keep them in your prayers. Sorry for an un-CHF post, but we want many people holding them up to the Father right now. Thank you!

Carol ?, March 2, 1999 - Hi, I am a first time poster on this forum. I found you as I was browsing for information about CHF. My husband was diagnosed with idiopathic cardiomyopathy and CHF in 1958, just prior to his 50th birthday. Our children were 9 and 7 at the time (the children of our senility). His ejection fraction was 37% and the doctors were talking transplant. He refused to consider this, took his meds and came home. He was followed on Coumadin for several months and then he just stopped going to appointments. He took his meds until the pharmacy refused to fill them and he was forced to see a physician again. At this time, his EF was 37% and the cardiologist remarked that it would have been a "tragedy" if he had had a transplant and took away his meds.
     He remained fairly well until late last year when he began experiencing swelling in his ankles and a rapid heartbeat. When he again entered the hospital, his EF was 25% and he was in atrial fibrillation. A cardioversion was considered but first they did a transesophogeal echocardiogram and discovered a clot on the atrium. So they have been trying to correct the rapid beat with meds, which seem to be working. He is scheduled for a repeat TEE this Thursday (March 4) and we will know if the fibrillation is truly gone and if the clot has dissolved. His Coumadin regimen is 5 days at 5 mg and 2 days at 7 mg. When he takes 7mg, he gets nosebleeds.
     I am concerned about the prognosis, what should I be watching for. Last time, it was needing to sleep upright, cough and swelling. All are currently present. His EF is lower this time than last. He falls asleep often just sitting and talking. I have not seen this before. What kinds of questions are appropriate? Should our children, now 20 and 17, be tested somehow for possible CHF? No one has mentioned transplant this time around. I read on the posts of folks with much less EF and wonder if I am making a mountain of a molehill. Thank you for letting me ventilate. Reading the concerns of others has been very helpful and supportive.

Caroline S, March 3, 1999 - Hi Everyone, I have been a long time reader, but never have posted. I have found this site to be of much help in working with my Mother's doctors. Now I have a concern that I hope someone can help with. My Mother has CHF with an ejection fraction of 15% due to a massive MI. She's usually on all the standard meds: ACE, Coreg (currently not receiving due to problems described below), digoxin, and Lasix. She has been pretty stable the past 5 years, albeit not very peppy and she has difficulty walking very far. She manages pretty well with reduced activity.
     Here's the problem. She and Dad recently headed south to escape the winter, which is brutal on her. They drove for about 10 days, taking their time, and now she is in Arizona, away from her regular cardiologist and other doctors. The final 3 days of her trip, she was having attacks of breathlessness and ended up in the hospital 2 days after arriving with acute CHF, bronchitis and the flu. She was in the hospital 10 days and we had one scary day when she had extremely high levels of carbon dioxide in her blood. She was released but didn't feel very well. She was very tired and had no appetite. A week later, she was in the hospital with potassium poisoning. After inhalation therapy and IV meds, her potassium level was ok and she was released again, feeling pretty good.
     Her only problem since release is lack of sleep. She has come to rely on Restoril, which the doc won't give her. Her blood pressure was fluctuating wildly about a week ago but has been stable for about a week. After 2 straight nights without sleep, she was extremely restless, getting up often during the day, unable to sit still and concentrate on anything, and she had a few palpitations. Today she went to her cardiologist and he prescribed Elavil. Does anyone have experience with this drug? My concerns are that Mom's usually a very positive person (she's a natural born optimist) but she's a little down right now. I'm not sure her restlessness was related to depression or related to the physical stresses of the past few weeks, or related to withdrawal from Restoril or related to use of Ambien (which she took for sleeping instead of restoril), or just due to sleep deprivation. I am also concerned about the contra-indications for the med, including acute CHF, which I guess she doesn't have right now but did in the near past. I am concerned about the adverse events listed for the drug, including stroke and irregular heartbeats because she has a mechanical mitral valve. I'm worried that this was prescribed in part to make her a more manageable patient. She's not combative but her family has learned to ask questions when she's not doing so well. I hate it when a new drug is added to the mix. She's had nearly fatal allergic reactions in the past. Usually her problems have some underlying medical basis, like the appetite suppression caused by the potassium poisioning.
     Any advice? P.S. Best wishes Jon, thanks for providing this site, which has seen me through the good times and bad.

Jon's March 3 reply to Caroline S' March 3, 1999 - Hi Caroline, I was on Elavil for a while because of sleep deprivation. Now, I take Ambien with great success. The Elavil had to be raised to well over 100mg to make me sleepy and at that dose, I stayed sleepy all the time and just couldn't function. I did check with my cardiologist at the time and he said there are usually positive effects from this class of drugs for ill people who have trouble sleeping. There is an adjustment period, so give it some time. If, after a while, she is groggy or "down" very often, definitely discuss a meds change with her doctor. My advice is to keep a diary so you have accurate info for her doctor should she need a change. Attitude, depression, appetite changes, sleep habits and so forth should be recorded by date and time of day. This is a huge help down the road. Jon.

Jon2, March 3, 1999 - Hello, I have been out of touch with this page for a few weeks. My family had quite an interesting time with Mom and I thought you may want to hear. Mom collapsed at home and my sister took her to the emergency room in Victoria where she lives. Mom had developed a heart arrhythmia. While in the hospital, she was defibrillated 3 times on the day my brother and I showed up. She was put on lydocaine, dobutamine and amiodarone drip, which after a short while was changed to an IV they placed just below her collarbone because the veins in her arms would not accept any more punishment. The cardiologist then installed a temporary pacemaker in her vein so they could defibrillate easier, he said.
     However this appeared to be the last straw for Mom. In front of me, my sister and 2 nurses, she ripped out her IVs and pacemaker, and declared she was through with suffering and just wanted to die. She was also developing some neuropathy in her leg causing a lot of pain and preventing her from getting much sleep. One of the nurses actually started to cry. The doctor said that if she wouldn't take the medicine, he wouldn't force her to. Her family doctor came and said that her kidneys were failing, her liver was failing, her lungs were failing, and she was not metabolizing her insulin any more. Well, needless to say, we were all quite emotional but we decided to let Mom decide her own fate and the doctors promised to take away any discomfort and let her get some sleep.
     In the next 18 hours, Mom went into 3 very severe arrhythmia atttacks. My sister, brother and I were at her bedside expecting her to die but each time her heart came back into rhythm by itself. Mom started to be a little ticked at me and accused me of plotting with the doctors in keeping her alive. She also asked me to kill her. I did manage to cry for the first time in 30 years at that. However, the doctors were true to their word and gave her morphine and phentilyn for pain. One day later, she was feeling much better and agreed to start taking oral medication again. Her blood suger rate dropped to normal, her kidneys started working, and her liver improved. The next day she had an angiogram where they noticed her coronary artery was blocked so they installed a coronary stent. The day after that, she was home.
     My brother and I left for our homes and my sister remains to look after Mom. Unfortuntely, although her EF has remained at 28%, she is not handling the amiodarone drug very well. She has become quite nauseous and is not eating and seems to be getting quite weak again. She also seems to have caught the flu. Her lungs are clear but her bronchial tubes are not. She coughs a lot. Anyways, my question to anyone is. Does anyone have some knowledge of the side effects of amiodarone and do they go away as the dosage goes down? She was started at 1000mg but now 3 weeks later, will soon be down to 600mg. Also, my advice for those of you experiencing a loved one slowly deteriorate with CHF is just to take each day as a gift, whether good or bad.
     Jon, the cardioligist here tells me Coreg is contraindicated in cases where there is COPD. Does this jive with what you know? See you.
Jon's Note: Shortness of breath & asthma attacks are known side effects, so I believe he is correct

Bill D's March 3 reply to Carol ?'s March 2, 1999 - Hi Carol, Welcome to Jon's Place! This site is much larger than you think. In addition to the messages on the forum, Jon has over 200 pages and links to CHF information. Click on "Site Index" at the top of this page. Start by reading "The Manual." The more you know, the better for you and your husband. You can learn what questions to ask your doctor. He'll know he's dealing with sombody who's reasonably well informed and you'll find he will be more forthcoming. Your husband made a wise decision 10 years ago. Had he got a heart, more than likely it wouldn't have lasted all this time. You'll find most of us are on the same types of meds

  1. an ACE inhibitor
  2. digoxin
  3. a diuretic
  4. a beta-blocker like Coreg
  5. Potassium that the diuetic washes out of us

     We all take them without fail! Bill.

Deb J's March 3 reply to Donna T's March 1, 1999 - Hi Donna, I'll do the best I can to explain right heart pressures. It can be a little confusing. When you have heart failure, other parts of your body do things to compensate, your lungs included. I believe the blood vessels in your lungs constrict and collapse as a result of heart failure. Think of it like high blood pressure. As your arteries become more and more narrow or blocked in your heart, your blood pressure increases. One of the most important tests in the evaluation for transplant is the right heart catheterization to measure these pressures. If they are too high and can't be lowered with medication, they probably will not put you on the transplant list. This is because when they put a strong healthy heart in you and hook it up to your lungs and the pressures are high, it makes it hard for the new heart to pump against those pressures. Lots of things can go wrong, as I found out when my husband had his transplant. His pressures were high but manageable with dobutamine. About 3 hours after surgery, his oxygen saturation started to decrease (he was on a ventilator), he had EKG changes and because the right side of the heart was trying so hard to pump blood to his lungs, the left side started pooping out. It was very scary. Finally, the medications they were giving him started to kick in with a lot of help from God above. If the meds didn't help him before surgery, chances are they wouldn't have helped afterwards. If you have any questions, feel free to e-mail me.

MaryAnn, March 3, 1999 - Hi, My 93 year old mother is now living with us. She has CHF and will begin taking Coreg tomorrow. I'm glad to know about the dangers of taking too much Vitamin E. She takes 3 pills per day since the eye doctor told her to do this to help slow down her macular degeneration. I'm so glad I found this Web site. No one around here seems to know very much, no support groups. Thanks.

Jon's March 3 reply to MaryAnn's March 3, 1999 - Hi MaryAnn, Welcome to Jon's Place. Remember not to go by how many pills she takes but by the combined daily dose. Vitamin E is measured in IU or International Units. Check with her eye doctor and tell him she has CHF and confirm how many IU of vitamin E he wants her to take every day. Then run that number by her cardiologist. She will need to be especially careful if she is on a blood thinner like Coumadin (warfarin). Jon.

Barbara ?, March 3, 1999 - Hi, My husband will start Coreg in three weeks. He is a heavy smoker and drinks heavily. I want to know how the smoking and drinking will affect how his body reacts to the Coreg. Anyone with information, please share.

Kris, March 3, 1999 - Hi, I am glad to have found this site. My fiancee is 44 and has been diagnosed with CHF. The condition has been present in a mild form since he had Grave's Disease with resultant atrial fibrillation about 9 years ago. He was admitted to the hospital about 2 weeks ago with fluid buildup in his lungs and pericardium. They used aggressive diuretics to take about 47 pounds of fluid out of him, which left him very weak. At this point, he is in a nursing home, where they refuse to give him the low sodium diet the doctor ordered for him, and his edema is returning. He is scheduled to have an echocardiogram tomorrow to assess his heart's condition. In addition to all the other problems, he is morbidly obese. The care center does not have a wheelchair which he can use, nor will they find one.
     In order to get him to the cardiology appointment, they are asking that I deal with the transportation problem. None of the medical equipment suppliers around here can get a chair in less than 4-6 weeks, at which time we sincerely hope the dizziness and blackouts he is experiencing (which are diminishing on a daily basis) will be a thing of the past and the chair will no longer be required. We realize that everyone from his doctor on down is waiting for the results of the echo before they do anything more for him, but the level of care he is receiving is appalling. Does anyone have any suggestions about how to force the care center to give him his prescribed low sodium diet, and to provide a wheelchair for him so he can begin some walking to start to gain his strength? We are currently applying for medicaid help. We have no insurance and he has virtually been unable to work for the last year. We also have begun the application process for SSI. I'm sorry for the garbled content of this post but I am only beginning to come to grips with the severity of his condition and the muddled mess our local health care seems to be. We are not anywhere close to a metropolitan area and finances preclude our being able to go to a major city for help. Any advice would be welcome.

Jon's March 3 reply to Kris' March 3, 1999 - Hi Kris, Honestly, the best thing to do is move him to a nursing home where they give a hoot. This is the only real solution. If that is not at all in any way possible, get a handwritten original note from his doctor to the nursing home administrator (dated) stating in precise terms that a low sodium diet is "required" for this patient's health and well being. Photocopy it twice. Keep one copy. Give another copy to a friend in case something happens to yours. Take a friend to the administrator's office (for a witness) and politely give him the doctor's order. Tell him this is a doctor's "order" and ask for (insist on) a written receipt showing that he received it on this date. Also, look into which agency in your state regulates nursing homes. Drop them an e-mail or phone call, and ask them about this lack of compliance. It's no joke to the regulators and they will make sure the nursing home staff stops shrugging it off, I assure you. It is a highly regulated industry. Be sure the state regulators understand that for a CHFer, low sodium diet is not just preventive but is an actual method of treatment. I'm not sure why he needs a wheelchair to start walking, so I'll pass on that one. Jon.

Karen P, March 3, 1999 - Hello, My husband has CHF at age 58 and we just submitted the paperwork for SSD. I have learned on this site that Medicare kicks in after 2 years of SSD. Is this mandatory and is it a good thing? What happens to the other comprehensive coverage he is currently under? I should check with this company to make sure they offer supplemental coverage? Any thing we might be overlooking? Thanks in advance.

Bill D's March 4 reply to Jon 2's March 3, 1999 - Hi Jon 2, I wouldn't imagine your Mom views each day as a gift. They say that many of us die from the meds instead of the disease. Here's the scoop on amiodarone: It's an antiarrhythmic drug (for irregular heartbeats) that is supposed to work by slowing nerve impulses in the heart and working on the tissue itself. Doctors have to be careful if their patients take blood thinners or other heart medications. Elderly people have more problems with it than young people. They can get thyroid problems plus numbness, tingling and trembling in addition to the more common side effects - "Cough, painful breathing., shortness of breath, slight fever, skin sensitive to sunlight, trouble walking and unusual and uncontrolled movements of the body." Less common side effects are: "Blue-gray skin coloring, blue-green halos around objects they see, fast, irregular heartbeat, slow heartbeat, trouble sleeping, sweating, and weight gain or loss." The Mayo Clinic Pharmacist CD didn't say anything about the side effects going away as the dose is decreased. Amiodarone has the dubious distinction of having most of it's side effects listed as "more common" and "less common." Most of the other drugs talk about "rare." It seems to be the only drug they know of that "treats" ventricular arrhythmias. If I was your Mom, I'd want the doctors to refer me to hospice. I wouldn't want to be "saved" just so I could suffer again. That's my 2¢. Bill.

Cheryl, March 4, 1999 - Hello, My name is Cheryl and I take care of my 87 grandmother-in-law here at my home in Texas. I need help from someone who is going through the same thing. I don't know what I am doing, to start. The doctor keeps sugar coating everything and will not give me a straight answer. She believes that the medicines will cure her. She had a heart attack in November which caused the CHF or caused it to accelerate. I am only 23 and I have a 1 year old son. I am stressed, exhausted and confused. She seems to be in the last stages of CHF but no one will get anything straight with me. Please, if you are in a similar situation, please write. I will take any advice thrown at me. Thanks.

Deb J's March 4 reply to Bill D's March 3, 1999 - Hi Bill, Your response to Carol ? concerned me a bit. You said that her husband made a wise decision 10 years ago by not having a transplant because he probably wouldn't be here anymore. Many people are living well beyond 10 years with a heart transplant, some 20 to even 30 years. Nobody knows for sure how much time a transplanted heart will give you. There is a lot of research going on in this area. Cyclosporine, which you've probably heard of, can now be given at much lower doses, therefore lessoning the side effects which can cause a multitude of problems. There are even a couple of new and improved immunosuppressives coming onto the market this year. I'm not saying that Cindy's husband made the wrong decision 10 years ago because obviously he didn't need it at that time, I just wanted other people who read the post who may be faced with transplant to know that a transplant can last more than 10 years.
Jon's Note: I think cyclosporine dose can be lowered only if another drug (Nizoral or rapamycin) is added, or depending on individual rejection response

Jon's March 4 reply to Cheryl's March 4, 1999 - Hi Cheryl, I know you're short on both time and energy, but if you can send us a few bits of info, maybe we can help you a lot more. Can you send us any test results you know of, medication names with dosages, and also any symptoms she suffers on a regular basis? Then we will have some idea of what we can tell you that will be accurate for your situation. Thanks - hang in there. Jon.

Merry M, March 5, 1999 - Hi, We just found out my dad has CHF. I have read the Manual and it has answered a lot of questions, however I do have a few more. I think he is in Class 3, what exactly does that mean? Does this determine how bad his CHF is or about his longevity? The doctor has him on Coumadin, Lasix, prinivil, digoxin and just added a beta-blocker. The Manual stated that digoxin is used when you are in the last stages. What does this mean? Thank you.

Jon's March 5 reply to Merry M's March 5, 1999 - Hi Merry, Heart class means functional class and describes how severe symptoms are - what you can do physically. The 4 classes are described at the top of The Manual, right after the intro. Can you quote me the digoxin reference so I can answer accurately? My memory stinks! <G> It does say that digoxin is even more useful in late stage CHF than in milder cases. There are also articles about digoxin at New CHF Meds. CHF meds can get confusing, especially at first. Maybe you mean something other than digoxin - be sure to let me know. Jon.

Gus R's March 5 reply to Kris' March 3, 1999 - Hi Kris, Have you tried any of the "clubs" in your area for a wheelchair? In my small town, some of the groups like VFW, American Legion and Lions have wheelchairs they loan out at no cost, and one usually does not have to be a member. If you have any of these types of groups in your area, give them a call. If they can't help, maybe they can suggest someone who can.
     I agree with Jon's statement - look into which agency in your state regulates nursing homes. They might not move fast enough to help you much but they just might, and you could also be helping someone else down the road. A local nursing home here just got fined $10,000 by the State of Illinois because they wheeled a helpless resident out for some sunshine and forgot him. He received a nasty sunburn, not life threatening, but painful and this person had enough problems already. That fine didn't help him, but I bet nobody else will get a sunburn there! Good Luck, Gus R.

Virginia R's March 5 reply to Kris' March 3, 1999 - Hi Kris, You didn't mention what state or country you are in. If you are in the USA, there should be weekly Healthcare meetings taking place on behalf of your fiance. He has the right to be there as well as appoint a designee to attend. This is an interdisciplinary meeting that takes place, so the dietician should be there. Sometimes the docs make it too. OBRA Regulations/1990 spell out these rights and need for meetings. The dietician may have the misconception that a former Graves' Disease patient needs iodine or salt. I'd let the doctor know the nursing home is not following his orders. Your fiancee or the designee have the right to call the ombudsman for that nursing home. It should be prominently posted on a public bulletin board inside the facility. Also, the last survey from the Department of Health should be posted. You can see which deficiencies, if any, the home received and if they have been corrected. As for the wheelchair, you might consider calling one of the charities or a medical supply company and asking for a loaner. Also, nursing homes should have a social worker to assist you in allocating resources. I'd be interested in hearing more about the Grave's Disease if you get a chance. I have that diagnosis and it is atypical. My dad is the CHFer. Feel free to write me anytime.

Gus R's March 5 reply to Karen P's March 3, 1999 - Hi Karen, You almost have to be an accountant and a lawyer to be sure what Medicare will mean to you but it worked well for me. I now have Medicare (A and B) as my primary insurance and my old HMO as secondary insurance (not as a Medicare supplement, there is a difference). The end result is that I have the exact coverage I did before Medicare but the total cost for 1999 will be $486 less than the HMO would have been by itself, and I have no copays, no deductables, and I don't have to worry with any of Medicare's paperwork. I do get the confusing paperwork from Medicare but I file it and forget it. The HMO gets the same paperwork and anything Medicare didn't pay and falls back to me now belongs to the HMO, who pays it, protests it or whatever needs to be done. I have had this coverage for 3 years now and am very pleased with it. Some things, such as drug coverage, I did not have before and do not have now but what I did have has all remained, and at a lower cost to me.
     My wife did have to change her HMO coverage to her own individual coverage from being a second party to my individual coverage, but there was no loss of coverage or cost increase to her. We have found no hidden problems for her in the 3 years. My advice to you would be, don't worry about it too much now as it will probably work out fine, and in 2 years the rules could change enough to make any decisions you make now obsolete anyway. ;~) Gus R.

Joan K, March 3, 1999 - Hi, My husband is 57, has a bad vascular system and 2 closed bypasses, as well as one functioning kidney. He also has CHF. He's on Lasix, digoxin, blood pressure meds and cholesterol meds. The cardiologist says he isn't a candidate for beta-blockers. He had to stop the Vasotec because of high BUN and Creatine. He had a checkup today and has been experiencing increased shortness of breath. The MD says there are no changes in his EKG and his lungs are clear. In the middle of the night, he is awoken by a feeling of his throat constricting. He sits up and it eventually goes away. The doctor doesn't know what it is and did not suggest further follow up. He says it isn't heart related. Does anyone have any ideas or suggestions which avenue to pursue or what this is coming from? Thanks for your help.
Jon's Note: Regarding ACE inhibitors, fisinopril (Monopril) can sometimes be taken by people with kidney failure - it is excreted by the liver as well.

Bill D's March 5 reply to Deb J's March 3, 1999 - Hi Deb, You are right and I was wrong. I just assumed a patient who had a transplant in 1989 was only expected to live an average of 10 more years. I tend to make up statistics to fit my "facts." <g> I will consign myself to a week in my doghouse. Billdog.

Sharon S' March 5 reply to Jon 2's March 3, 1999 - Hi, I am so sorry for the pain you and your mom are suffering. Your family is in our prayers. My husband and I recently received info on amiodarone from Brigham and Women's Hospital Heart Transplant Clinic. They laid out the risks to us and said that they have to list everything but many patients take amiodarone with no side effects at all. Here's what they say:

     "Amiodarone is a powerful heart rhythm drug with several potentially serious side effects. The following side effects were reported in 4-9% of patients: visual disturbances including visual halos, blurred vision, photophobia (avoidance of bright lights) and dry eyes. Most of these sypmtoms are reversible if the dose is reduced or the drug is stopped. The following side effects were reported in less than 1% of patients: blue skin discoloration, rash, bruising, hair loss, slowing of the pulse, reduced liver function, inflammation of the lung, muscle weakness, reduced thyroid function and nausea. Rare cases of severe inflamation of the liver (hepatitis) and cirrhosis have been reported. In the Antiarrhythmics vs. Implantable Defibrillators Trial (AVID) sponsored by the NHLBI, the following complications were reported in 493 patients randomly assigned to amiodarone: inflammation of the lung (3% and 5% after treatment of 1 year), reduced thyroid gland function (10% and 16% after 1 and 2 years of treatment, respectively)."

I'm sorry this is so long but I thought that the more info, the better!

Mandy S, March 5, 1999 - Hello Jon, My name is Mandy. On 3/3/99 my Mother was diagnosed with CHF. She has never had a heart attack and I took her to the doctor thinking she had bronchitis. Not only was she diagnosed with CHF, she has double pnemonia and fluid in here lungs. He wrote a very large perscription for a lot of the drugs you have named and then sent us home and told us to keep an eye on her for the next 48 hours, then bring her back to the doctor so he can check her. I think I am in shock. I found your site last night and it has been very informative. Like Cheryl, what do I do now?

Jon's March 5 reply to Mandy S' March 5, 1999 - Hi Mandy, Step number one is to wring some info out of the doc. Find out if he can determine the cause of her CHF. If so, is that underlying cause treatable, and how? If not, start gathering low sodium recipes, ask about fluid restrictions, exercise and blood testing every few months (at least) to check her potassium and magnesium levels, liver and kidney function. Ask if she is at risk for stroke and if so, what meds will be used to reduce that risk. Then get back to us and we'll lay step number two on you. <G> Jon.

Katherine J, March 5, 1999 - Hi guys, My mom's doing a little better. Thanks for all the prayers and encouragement. We have a new problem. They're going to surgically install a "permanent" (indwelling) catheter in her neck for dialysis on Monday. Tuesday, they're moving her to a "skilled nursing facility." Directly across the street is a hospital to which they are going to bring her 3 times a week for dialysis. They say the transport across the street is not covered by Kaiser and they can't just push her across the street in a wheelchair. She's too weak to sit up. So, they say, we'll have to pay for a transport company to pick her up and "drive" her across the street. My question is do we have the right to push her across the street ourselves on a gurney? Transport would otherwise cost between $100-250. Any thoughts? Thanks, as always, for being here. Katherine.

Dina R, March 5, 1999 - Hi, I want to thank Jon for this Website and all of you for sharing your stories. My husband was diagnosed with idiopathic dilated cardiomyopathy (probably caused by a virus) and CHF on December 28,1998. He also is in a-fib. His EF is 10-15. I would say he's Class 3 but there are times when he's a Class 4. He seems to be one of only a few to be taking Coreg and Cordarone at the same time. They took him off Digoxin and that seems to make him feel better. He's on Lasix, Coumadin, K-Dur (potassium) and Vasotec. He's starting to drive again and that helps for him to be able to get out of the house. It makes me nervous though because he sometimes gets dizzy. He doesn't drive often, though. Thanks again for everything. The Manual is great and I copied it for my friends and family. Dina.

Jon 2's March 5 reply to Bill D's March 4, 1999 - Hi, Thanks for your response Bill. We are in sort of a palliative mode with Mom right now. Although she is at home where she wants to be, she is on 2.5mg of morphine every 4 hours which is keeping her pain-free. We are still giving her meds because we and her doctor aren't positive what is going on in her body right now. Her appetite is completely gone and although we are maintaining her blood sugars she has a hard time even keeping her pills down now. Some juice and broth is all she's eating, although we are offering her anything like maple walnut ice cream or whatever. We are giving her gravol. We are reducing the amiodarone and taking her off ticlid. She was given this after her angioplasty. Her doctor says she is not experiencing heart failure right now, her blood pressure and heart rate are good, and her lungs are relatively clear but she has severe bronchitis. She asked if she was about to die and all we could say was that it was between her body and God now.
     At times, she seems to accept what is happening and other times she is a little afraid. Her doctor says that although she thinks that her time is near, she has also thought that before only to see Mom rally. She says Mom surviving her original heart attack was a miracle. Three times in the hospital, we were there telling Mom to walk into the light only to have her come back. At one point even Mom started to laugh at the ridiculousness of it all. It's very difficult to give up for us and for Mom, it seems. While her day to day life might not seem a gift to her, we aren't letting it be more of a burden than it has to be. We have called the local hospice society and we'll see what they have to offer. My Mom met with them during my Dad's illness 4 years ago but only once. When told that we were going to talk to them, she didn't think they could offer much. I guess we'll find out.

Cheryl's March 6 reply to Jon's March 4, 1999 - Hello Jon and thanks for your reply. The medications she is currently taking are Lanoxin, Imdur, Pacerone, Zestril, and Diamox, and aspirin. She has tremors in her legs, even when she is just sitting there. She sometimes talks in her sleep, which used to not be normal. She is contantly twitching and moaning in her sleep. This once again, has never happened. She has no more spunk whatsoever. This past summer, she was tending to her blackberries, making jam and doing grandmother type things. Now she gets tired just getting out of bed to go sit in her chair. I tell the doctors these things but they say that is normal for a woman in her mid-eighties but what I can't get across to them is that this is not normal for her. I have had to help her go to the restroom but she used to be so vibrant. This has happened so fast, in a few months time. I am worried and scared at how much longer she has. The doctor says she probably won't live past a year but it seems to be coming really quickly.
     Only 20% or a little less of her heart is working and all of her arteries are clogged. If you need any more information, just let me know. Thanks for your help. Sincerely, Cheryl.

Jon's March 6 reply to Cheryl's March 6, 1999 - Hi Cheryl, Does she have glaucoma or epilepsy? Diamox is not a usual drug to give just as a diuretic, although it is sometimes given for CHF. Its side effects are greater than those of the usual diuretics such as Lasix, Demadex and Bumex. It can cause confusion and drowsiness. Also, it should not be taken every day, but rather every other day or 2 days on, one day off. Also be sure she is taking small doses of aspirin as it can interact with Diamox. A baby aspirin is usually considered enough for anti-stroke therapy. Finally, on the Diamox subject, be sure her blood is being tested at least once every 3 months for potassium and magnesium levels, and for liver function. Her urine should be tested at the same time for kidney function. This is important because too high or too low potassium level can cause serious health complications. Most of us take a slow release prescription potassium supplement called K-Dur.
     Her EF is probably around 10-13% if 20% of her heart is working. That is a low EF and will greatly slow her down. Her other organs are also not getting the blood they require to properly function and this will slow her down even more. I cannot find Pacerone info anywhere. I assume it is for heart rhythm problems. Some drugs used for such problems have a hefty list of side effects but I can't help you there. Maybe someone taking it will respond, with info from the insert that comes from the drug prescription.
     For now, I really suggest you take the time to read The Manual if you haven't already. It is the single best source of info on how to cope with CHF that I know - no immodesty meant. <g> Poke around a few more of the pages in my Site Index and then let fly with more questions. We'll help all we can. Sleep problems of one sort or anotrher are common with CHF, but the main thing is that she is breathing well when alseep and that she gets enough of it. I am only 40 years old, have CHF, and I require 11-13 hours sleep a day to function fairly well the rest of the day. I also really drag because I am just so tired due to reduced heart function and all these meds! Hang in there and get back to us, please. Jon.

Merry M's March 6 reply to Jon's March 5, 1999 - Hi, Thank you for the information. Everything is very confusing right now but I do know that finding this page has helped my family learn a lot more about CHF. I think I just took the fact that the digoxin is more useful in late stages out of context. I guess what I'm asking is, do doctors typically give this drug only in the late stages of CHF? I am very curious as to if my dad is in a late stage of CHF. Is there a way to determine how severe his CHF is? The doctor said his heart was beating at about 50%. I want to learn as much as I can about CHF so that I can understand and help my dad to understand CHF. Any information you feel would be useful to me I would appreciate, good or bad. Thank you.

Jon's March 6 reply to Merry M's March 6, 1999 - Hi Merry, At the risk of sounding rude, you have got to read the info on my pages first. Take a look at the site index, which is available through the link at the top of this page. Then, you will be able to ask more specific questions. So give a large handful of pages a good read and then pop back in and ask away - we'll help all we possibly can. You will find articles about Digoxin. The heart classes described at The Manual are a standard way to tell how severe his CHF is. Jon.

Joan K's March 7 reply to Katherine J's March 5, 1999 - Hi Katherine, Regarding your mom's transportation to dialysis, I don't know her financial situation but Medicaid will cover transportation and an ambulance, not ambulette. If she is in a life threatening situation, she can use the ambulance. Also, if she is not on SSD, have someone assist you. I understand that dialysis rules are that a person on Social Security Disability is eligible for Medicaire after 3 months. If all that fails, ask for the assistance of the social worker, nursing home and the dialysis center. Then call your local Congressman. If she is Medicaid pending, an ambulette company should do this transport if it is requested by the nursing home, hospital or dialysis center. Call all the local ambulette companies in your area and ask for their help. Ask the local newspapers to print a human interest story if all else fails but remember the sqeaky wheel gets the grease. I know you are stressed right now but have someone else who is not intimidated by the system do this. Good luck and let me know if I can help.

Joan K, March 7, 1999 - Hi, I am so grateful for this Web site and want to say thanks for offering this "life saver," which it truly is. My husband, having CHF, is experiencing new symptoms. He wakes up every night, every hour, with shortness of breath from his left side. He says he has chest pressure (no pain) and his throat starts to swell. Prior to that, he would just experience shortness of breath and have to sit up and take another Lasix and eventually it would pass. He had a stent to his subclavial artery a few months ago. Do you think this is a vascular problem or is it a symptom of CHF? I've read all the information and literature and can't find an answer. His cardiologist doesn't know about the throat closing. Does anyone have a Craftmatic bed? I'll purchase one if you think it will help. Thanks again for all of your support. You are my lifeline.

Anna, March 7, 1999 - Hi, I have a few questions. What is the best way to find a good CHF doctor? In my husband's case, he has other heart problems, such as a severly enlarged heart and a patch that was put on when he was 7 that might be leaking. Does it make sense in his case to go to a CHF doctor and leave his cardiologst? He also has a pacemaker because the electrical system in his heart is gone. Any suggestions? By reading this Web page, I have come to find that my knowledge is so limited. I plan on going to a few links to find out more that I can talk to his doctor about. One thing I have not heard much about - my husband's swelling does not go to his legs, it remains in his belly. He always looks swollen to me. Is there any good way of knowing if what he has is just an upset tummy or stress or when we are having a real problem. He is feeling so bad now a days, emotionally, that his sleepiness and bad feelings can be from that or his heart. As I said before, he is due to go back to the doctor on March 15 and I plan on going a much more informed person due to this Web site. Thanks to all that post and give me help.

Jon's March 7 reply to Anna's March 7, 1999 - Hi Anna, Welcome to Jon's Place. I'll answer a couple and hope that someone else can pick up the rest. I get all my swelling in my stomach also and it is extremely uncomfortable. The best way to know if the problem is fluid is to weigh himself every single morning in his birthday suit. If he gains more than 2 pounds in 24 hours, it is probably fluid retention and he needs some extra diuretic if that is ok with his doctor. Jon.

Tandy K, March 7, 1999 - Hi, I am having a problem with Medicaid. The caseworker notified me by phone yesterday that Brandt would no longer be eligible. She said my husband and my income exceeded the limit. This is fairly complicated but boils down to the fact that they are using the paystub when my husband had worked some overtime. I have applied for SSI and this would guarantee his Medicaid (my understanding). 3½ months ago they told me if I haven't heard from them by June to call back. We do have insurance but the bills mount without the Medicaid and our insurance policy will not cover a lot of the preventive care Brandt needs or prescriptions. Is 8 months a normal amount of time for an SSI claim? How do you appeal Medicaid denial? Any help would be appreciated. Tandy K, Mom to Brandt, age 13 months, EF 40.

Deb J's March 7 reply to Joan K's March 3, 1999 - Hi Joan, Is it possible that your husband could be suffering from anxiety attacks? Many people who are under a lot of stress may have anxiety and not realize it. One symptom is being awakened in the middle of the night with a constricted feeling in your throat and difficulty catching your breath. Check out some info on anxiety and panic disorders. Deb J.

Bill D's March 7 reply to Katherine J's March 5, 1999 - Hi Katherine, Have you talked to the people at the "skilled nursing facility?" Maybe they can come up with a solution. Maybe neither one wants to be liable if your Mom dies or falls out of the gurney while crossing the street. There must be other patients in the same fix. Maybe you could talk to the nurse who does the dialysis. Good luck. Bill.

Bill D's March 7 reply to Jon 2's March 5, 1999 - Hi Jon 2, Your Mom sounds like a wonderful person. Anybody who can get a laugh out of that situation is somebody I'd like to meet! I'm glad they are taking her off Ticlid. It's awful and probably is the cause of her lack of appetite. I've been on the stuff and each day I got sicker but didn't want to tell the doctor for fear they wouldn't let me out. It's to reduce the possibility of strokes. Hopefully they can take her off amiodarone too. I don't think anyone could survive the side effects of Ticlid and Amiodarone together! <g> If she's getting enough morphine to keep her pain free and the doctors aren't practicing aggressive medicine, maybe she will rally after all. Bill.

Deb J's March 7 reply to Jon's March 4, 1999 - Hi Jon, What I meant by lower doses of Cyclosporine was that in 1995, a new microemulsion form was introduced and it requires less medicine to achieve the same effect. Therefore, from the get go they start you off at a lower dose than they used to prior to this new form. I guess not only provachol helps with transplants, all the statins do.

Jon's March 7 reply to Deb J's March 7, 1999 - Hi Deb, I am unashamedly paranoid about transplant information posted on the message boards here. That's because it is a subject where hopes can be raised in the blink of an eye and dashed forever even faster, often without the poster ever being aware of it. Call it an overdose of sense of responsibility on my part. So, I tend to comment and edit a lot on transplant oriented posts unless I have seen the documentation. Unfortunately, I research CHF far more than transplant so I don't have the same size library of information on the subject. Can you e-mail me how much the dose went down and if the change required approval by the FDA? I need all the info I can get, and in fact, some of my best info is drawn from readers. Thanks. Jon.

Cheryl's March 7 reply to Jon's March 6, 1999 - Hi, Thank you for the quick response. The Diamox was given because Lasix wasn't working for her. Her lungs started to fill with fluid and we almost lost her. The Pacerone is because she has an irregular heart beat which the doctors are concerned about as well. There is a long list of side effects that go with the Diamox that now have me concerned. She is on 325mg of aspirin a day and I think I will switch her to a child aspirin if her doctor says that that is ok. She slept about 75% of the day today but I know that is normal. I don't like it but it's normal. Thank you for all of your advice and The Manual is absolutely fabulous as far as symptoms and diet and, well, everything. I wouldn't know what to do if this Website was not existant. Thanks again for all your help, advice and research. Sincerely, Cheryl R.
Jon's Note: Have you checked out Bumex? It is much, much more effective than Lasix with fewer side effects than Diamox

Hanna, March 7, 1999 - Hi everyone, I have been reading and reading. My husband, age 53, was hospitalized with congestive heart and lung failure (doctor's description) in July of 1995. At the time, he was also diagnosed as having asthma, high blood pressure, sleep apnea, and hmmm, is that all? Anyway, he was put on a gang of meds and after numerous tests that found nothing else, after 10 days in ICU, he was sent home with orders to quit smoking and lose a bunch of weight fast. Well, he took his meds but that was all. He kept smoking and eating as before.
     In January of 1996, he was hospitalized with something but I forget the word. I cannot remember words. Anyway, his heart rate was 170-190. They could not get it down and it was climbing higher and they ended up cardioverting him. They had to do it twice, then meds finally took over the job. A post said something about skin discoloration. He has that too and I point it out to the doctor and he says hmmmmm. It is purplish like blotches that come and go and can be anywhere. He also seems to bleed very easily. He got a tiny nick I could not even see while shaving and it bled for an hour and a half till finally I got into my vet box and put the blood stop I use when dehorning calves on it. A week later, he woke up one night, thought he needed to go to the bathroom and found a pool of blood on his sheets. He said he then went and filled the toilet with blood. The doctor again said hmmmm, tested him for anemia and that was that.
     After reading The Manual, he is definitely Class 4. He does little but sit at the edge of the bed or lay in it. Doing anything like taking a shower leaves him breathless. Most of the time, his ankles and lower legs are swollen horribly. He is able to take care of himself. He showers, dresses, fixes himself something to eat but I honestly don't know for how long. I don't know what to expect next. What do I need to prepare for, plan on? It is very frightening. I feel so sorry for anyone with this illness, but like everything, there are 2 sides or more to things and my kids and I have suffered as well and will continue to do so.
     He takes Lasix, 2 different types of inhaler, a heart medication to regulate his heart rate. This one is new because what he was taking for that gave him a drug induced state of lupus. He takes potassium something else. The amount of potassium he takes is so huge the pharmacist has a fit every time we refill it. The bottom line is that I am petrified for him, my kids and myself. Any information or advice would be greatly appreciated. Thanks, Hanna.

Gloria, March 8, 1999 - Hello everyone, My father has very recently been diagnosed with CHF. I have read The Manual (which was an incredible help) and it answered a lot of my questions. However, because my parents have not been given very much information from their doctors and they live quite far away, I am concerned that Dad is not getting the best care he can. My mother told me that Dad has a leaky valve. He was hospitalized about 2 weeks ago. At first they said it wasn't his heart because the oxygen levels were ok but I guess after further testing, they determined that it was CHF. He is now on Lasix and 25mg captopril. I asked Mom if she new what his EF was and she said the ultrasound showed 67% so I am not sure if that is truly his EF or not. My concerns are the information that ACE inhibitors are hard on the kidneys as my Dad had a kidney transplant about 2½ years ago. Is there a better ACE inhibitor for Dad? So far, his primary care phycisian and his kidney specialist have not referred him to a CHF specialist. My parents are in a very small town so I know they would have to travel to a specialist. I am going to visit them in a few days and am going to arm them with a list of questions to take to the doctor the next time he goes. If anyone can tell me if there are any additional concerns I should have because my dad has had a kidney transplant, I would appreciate the information. Thanks for any help and thank you Jon, for this wonderful site.
Jon's Note: Monopril (fosinopril) is easier on kidneys because it is partly excreted via liver

Gus R's March 8 reply to Hanna's March 7, 1999 - Hi Hanna, I have some thoughts on your husband's bleeding. If he takes a blood thinner such as Coumadin, he will bruise easily and everything from a minor scrape on up will bleed more than normal but what you describe sounds wrong to me. Sometimes I think the phrase "fire the doc" is used a little too freely around here but it sounds like you and your husband should consider it in this case. At the very least, I think you should get a second opinion on this bleeding. This would not have to be from another cardiologist, even a janitor at the average clinic can come up with a better diagnosis than "hmmmm." I'm not only not educated, I'm nuts, and I know "a pool of blood on his sheets" and "filled the toilet with blood" are not "mmmm's," those are far more! Since I'm a CHFer myself, I don't have much advice to help you and your kids cope with your husband's CHF. I do know that the loved ones often suffer as much as the one with CHF, and personally I think martyrdom is for the birds. Best wishes, Gus R.

Jon 2's March 8 reply to Bill D's March 7, 1999 - Hi Bill, It's not so much the doctors taking off as much as she took herself off. They only prescribed it for 3 weeks after her angioplasty so that was only about 4 more days and we were getting a little desperate to try to get some food in her, especially as she is diabetic that we decided to reduce some of her medication. We'll see if it works or not. Her GP said to go ahead and try. Here in British Columbia, it's difficult getting hold of a cardiologist to ask any questions so we mostly ask her GP. To get hold of the cardiologist, you have to be in the hospital it seems, or make an appointment 2 months in advance. You can't pick your cardiologist, you just get the one that's available or on duty that week. It can drive you crazy. So far, my Mom has been seen by 4 different cardiologists at different times. They have this book that seems to follow her around but if you don't tell them her history, they don't appear to know what's going on. Anyway, her GP has known her for a long time so we mostly deal with her. She's even been making house calls! Thanks for the lowdown on Ticlid.

Wendy, March 8, 1999 - Hello everybody, I've just read all of the posts here and am in tears for all of us! My father has CHF and also a pacemaker. The other day, he became very, very bloated, which isn't the first time but when he went to his doctor, the doc told Mom that his heart was enlarged. What does this really mean? Beyond the heart muscle gaining mass due to compensating for the part that's dead? I want to be prepared, for Dad and for my Mom. Nobody seems to tell the truth, or all of it anyway. Thanks so much, I'll pray for us all.

Candy's March 8 reply to Hanna's March 7, 1999 - Hello, Maybe you and your husband should get a different doctor. Also, he absolutely must quit smoking and follow a diet specified by his doctors. Is he taking any kind of diuretic such as Lasix? I get discoloration in my feet and toes when I retain too much fluid. I don't think that's the same symptom as your husband. It sounds as if you're at wit's end as what to do next. Good communication between you and your doctor is important. There are a lot of ups and down with this illness. I'm sorry you are in a down period right now. Hopefully, the doctors can find out what's happening to your husband and get him on the right track. My doctors stress exercise, regardless of how much is important. I have a very bad back and can't exercise due to pain. I was instructed to do as much as I can without going into a lot of pain. Even doing stretching exercises makes me feel better. It also makes me feel psychologically better. Keep encouraging your husband to do what he can.

Bill D's March 8 reply to Joan K's March 7, 1999 - Hi Joan, It might be anxiety attacks like Deb says but when I have a little heart attack, I don't feel pain. I feel pressure. The pressure is at the base of my throat. I take a nitro or two and it goes away. I also have problems trying to sleep on my left side. Next time he wakes up, why not try a nitro tablet? After listening to all the patients on the other side, having to be propped up to sleep, I went out and bought an adjustable bed. It just goes to show we're all different. Here, I've had this stuff since 1993 and I've never had to raise that expensive bed. <g> I'll bet Jon would like it though! Bill.
Jon's Note: E-mail me that bed, will ya?!

Bill D's March 8 reply to Anna's March 7, 1999 - Hi Anna, I think the decision as to whether to keep seeing his cardiologist or go to a cardiologist at a CHF clinic depends on how well he feels. There is also the question of how far away the CHF clinic is. My group of cardiologists (14), have their own CHF clinic. My present cardiologist says he has to refer me to it when he wants me to go. Maybe the first thing for you to do is to "Call a Nurse" from the phone book and find out where the nearest CHF clinics are. Bill.

Bill D's March 8 reply to Hanna's March 7, 1999 - Hi Hanna, It sounds like you blame your husband because he didn't follow the doctor's directions. Still, you have to realize all he may have done was shorten his life and you can't even be sure of that. Some of us follow everything our doctors say and die in 6 months anyway. All of us who take a blood thinning medication, aspirin or Coumadin, bleed and bruise like crazy. If we have a pyle, every once in a while we'll bleed in bed. We can't feel it happening. Is he restricting his fluids yet? If he cooks his own meals, are you bringing him low-salt and no-salt foods? As far as what you can expect, no one can tell. He will need to be taken to the Emergency Room more and more, and one day he won't come back. The timing depends on him and what he does. He can still rally and feel better if he cuts out the sodium. Bill.

Carolyn B, March 8, 1999 - Hi Jon and all, Thank you for this web site. I have met some great people that have really lifted my spirits. My question is, How common is digoxin given in DCM? In my childrens' cases ( ages 12 and 14), they have no known irregular heart rate. I suspect it is precautionary. They have not reached CHF stage but by family history, it can go from mild DCM to end stage CHF and death quite rapidly. Any input would be helpful. They are on 0.5mg digoxin, which is a large dose.

Joan K, March 8, 1999 - Hi, Someone told me about a new "invention" for those with CHF. It is being used in Europe. It is a machine which attaches to the heart and gives the heart more strength, thus allowing it to pump better and alleviating many of the symptoms of CHF. My cardiologist never heard of it but the source is reliable. Is anyone familiar with this?
Jon's Note: See ICDs & More. They are LVADs. Your doc probably just didn't realize that is what you meant.

Tracy, March 8, 1999 - Hey, I have just found this site and it is very helpful. My father-in-law has CHF and is probably in Class 4, maybe late Class 3. He is a diabetic and was rejected for transplant. He is 53 years old and is staying with me for a while. My question is, what would be home anatropis therapy? This is on the reply from the transplant team. Also, they mention transmycardial revascularization. I read about this on this site. He also has a lot of itching and tingling on his face and eyes, would this be a circulation problem? Thank you for any info you could help me with. Tracy.

Jon's March 8 reply to Tracy's March 8, 1999 - Hi Tracy, They are probably talking about inotropic therapy at home. This is IV use of inotropic drugs like Inocor, Primacor, dobutamine, dopamine or the new Natrecor. These drugs increase the strength with which the heart beats, but they do have some drawbacks. You can find some info about these drugs by reading through my pages and through the Links page. Do a site search from the site index (see link at top of this page). The itching could be from dehydration. Maybe he needs to reduce his diuretic dose. Does he get dizzy a lot, especially when standing up? Jon.

Susan, March 8, 1999 - Hi, Great Website and the most informative I've ever seen on any subject. My father is 80 years old and is probably in Class 4 CHF due to poor heart valves. His breathing has become extremely labored over the past month. His heart doctor is in another town so his local internist oversees his local care - and doesn't say or do much. Can anything be done to improve his breathing? Sue.

Katherine J, March 8, 1999 - Hi everybody, Here's an update on Mom. They were unable to surgically insert the pic (permanent catheter) into her neck this morning, so this evening they're going to try to surgically implant it into her groin. Her white blood count is up again, and they're going to x-ray to see if the pneumonia has gotten worse. The worst thing for me is that I have a sinus infection so I can't go to the hospital to hold her hand and brush the hair from her forehead (I believe these are mandatory medical treatments, right?) because I know I'm contagious. Although I can explain it to her when someone holds the phone to her ear, I'm not sure she really understands. Thank goodness for my son. He tries to get down there before work. We got the transport for dialysis problem taken care of: Ready Wheels = $5 a trip. I just want to thank you all again for all your support: Jon and your family, Bill, Gini, Joanie, et al. It is outrageously generous of you all to give of your time and your hearts when you, too, are shouldering your own loads. Fondly, Katherine.

Hanna, March 8, 1999 - Hi, About changing doctors, this cardiologist and the lung doctor are supposed to be the best in the region. Truthfully I think the cardiologist is at this point a little ticked. I can see how he would be. You have a patient, you do everything humanly possible for him and he refuses to do even the simplest things to help himself. Our GP, who we have known for years, delivered 3 of our children, he got soooo frustrated with him one day that he whacked him on the head with his clip board!
     No, he does not limit anything - sodium, fluids, food, smoking, nothing. Our GP says it is like you talk and he only hears what he wants to hear. It drives everyone to the brink of distraction. Exercise consists of bed to chair in the kitchen to sit in front of the stove to cook something. He has a refrigerator in his room and a store of food. He uses a urinal to go to the bathroom even though the toilet is less than 8 feet away. Bill, yes, I guess I do blame him some. When I sit there and hear what the doctors tell him and it is ignored and then he turns around and says "the doctors gotta do something..." He is on 225mg rhythmol 3 times a day, 0.375mg Lanoxin, 5mg Prednisone 3 times a day, 400mg Suprax, 500mg Naproxin twice a day, 160mg furosemide. At one time, I truly thought perhaps he could get better and live a life with at least some quality. I guess hope is gone and that is so discouraging. Thank you all for the advice. I think you probably hit on it with the bleeding, considering it was only that one time, it makes sense. Prayers to all. Hanna.

Bill D's March 8 reply to Tandy K's March 7, 1999 - Hi Tandy, I'm the farthest thing from being an expert on Medicaid and SSI. I know Jon has lots of information about SSD and cases when you should get a lawyer who specializes in it. Click on his Rolodex as the subject comes up. I understand they get 25% of your first check. Maybe checking with one would be helpful about the Medicaid problem. I hope somebody jumps in here to help us out. Jon tells me he gets more help from the people at his church than he does from the government. Bill.

Bill D's March 8 reply to Carolyn B's March 8, 1999 - Hi Carolyn, The usefulness of digitalis has been studied and debated for centuries. What's known is that digitalis is the only drug that slows ventricular response without decreasing myocardial contractility. It slows the heart but doesn't weaken the pumping action. It is the fifth most prescribed drug in the world and is safe and inexpensive. Some doctors think it helps prevent atrial fib and will prevent CHF from getting worse. About half of CHF patients take it, including me. You'll just have to ask the doctor why he is prescribing it. Bill.
Jon's Note: digoxin actually increases contraction strength

Bill D's March 8 reply to Gloria M's March 8, 1999 - Hi Gloria, I think you'd like to know which valve is leaking and how much, in terms you can understand, like whether it should be replaced or not! As I understand it, valves can leak a lot when he forces himself to exercise or work but can leak very little when he is resting. That might account for the high EF and his oxygen levels being OK. Jon has answered the rest. Bill.

Tricia H, March 9, 1999 - Hi all, I have been reading and reading through all the posts for a day or so and finally sent Jon (thank you for your quick response) an e-mail when I finished a good cry. In 1990, my mom was rushed to an ER and diagnosed with an aortic aneurysm. It was scary and my family's introduction into the CCU care world, but thansk to God in his wisdom, they were able to treat the aneurysm with meds and they discovered 3 arteries all with over 80% blockage. Six months later, she had her first triple bypass. We were amazed at medical technology. She was home and walking in 6 days. However, she returned to a bad diet, no exercise and 3 packs a day smoking. Needless to say, she had her second triple bypass in 1992 and again she bounced back but nagging and begging did not help sway her to change her ways. She lost my dad to a massive MI in 1993 and went into a severe depression.
     She is not a religious person and believes medical science will continue to repair her. She continued to smoke and in 1996 had a single bypass and a stent implanted. At this point, her doctors were more candid about her health with her and us, to no avail. My mom felt pretty indestructable until this last episode. She had gone in for her bi-annual check up, and suffered an MI during the cath test. This was in September of 1998. Things went downhill pretty fast. She was transferred to a medical facility for another bypass. She suffered another MI before the surgery and was on a heart pump 2 days before and 4 days after what will be her last triple bypass. They wanted to do 4 but one graft was not useable. She did not bounce back as she expected. It was 4 weeks of "We need to wait and see" through all the organ failures with infections, and when she was released, we were told she had CHF. After reading this forum, I realize now my family and I did not have a clue. It is very scary to know she is at her best, which is so much less than before.
     She is not happy with the fact she can no longer drive. She said she would still buy a pack of cigarettes and get some Chinese take-out. She laughs when I tell her she could not make it out to the deck, where I used to make her smoke and I can't print my response to the Chinese food. She is 68, has a constant dry cough, is out of breath from moving more than 5-6 feet. She is 5'4" and her weight stays at 135. Her appetite has improved but her BP is inching up week to week (155/90). Jon, she did not take the walking advice well, however she circled our living room 4 times with her walker this morning, so it's a start. She took a long nap, too.
     Her meds are Zestoretic10/12.5 mg, Imdur 60mg, Tricor 67mg, Ultram 50mg twice a day, Neurontin 300mg 3 times a day, Paxil 20mg, Plavix, Coreg 6.25mg twice a day, Ambien 10mg, aspirin, iron and a multi-vitamin. Her legs give out and she complains of burning in her legs. She would sleep sitting straight up and her sleep pattern is eratic (mine is too, now). From The Manual, I've learned to monitor her fluids, use a lot of garlic and herbs when cooking. I thank all of you for your advice, insight and information. You have given me a life line. Her doctor is going to get an interrogation on 3/9 , now that I have somewhere to start. If I'm missing something, let me know. I feel so inadequate and need to catch up. You are all in my prayers. God bless. Tricia
     PS. On wheelchairs - some large malls lend them out as good PR.

Mandy's March 10 reply to Jon's March 5, 1999 - Hi, Thank you Jon, for your quick response. The shock has now worn off. As for my mother, trying to wring the info out of the doctor has been interesting. The medications he has her on are 40mg furosemide daily, 0.25mg Digoxin daily, and 10mg Quinapril daily and 500mg Clarithromycin daily for the pnemonia. The pnemonia has not cleared and the fluid is still there in her lungs. I've done my research on what all these meds do but don't understand why the pnemonia is not clearing and where the fluid would be coming from? The doc has requested more tests but has not informed us of how severe this is. Thank you all very much for all your info and thanks Jon, for being dedicated to this site. It has given a lot of info. My prayers are with you and your family.

Katherine J, March 10, 1999 - Hello, The catheter they surgically implanted last night in my mom could not work for dialysis because her veins are just not cooperating. After talking with her doctor, who told her what the future held, she decided to discontinue all heroic measures including dialysis. She has had enough and she just wants to go to sleep. They're keeping her at the hospital and keeping her comfortable on morphine but no other medications. Her lungs are starting to fill up but she's resting comfortably. She has only a few more days. She wouldn't let her kids have any input into her decision and we all respect that.
     Anyway, I just want to thank you all for the support and caring. I'll let you know when she dies. Jon, you and your family are providing a wonderful service. It's an outreach of love that is truly beneficial to many. Thank you.
Jon's Note: Thank you for remembering my family, who let me take so much of their time for this

Jon, March 10, 1999 - Hi all, I'm tired so this will be short. Mandy, with a weak heart and tendency toward fluid leaking into the lungs from CHF, pneumonia is an uphill battle. A cold is an uphill battle for us CHFers. You'll have to remember that from now on, every additional illness and health problem is a struggle for her. Our immune systems are very weak and we recover slowly.
     Everyone, my usual forms server is down, so I am temporarily using a geocities' script and they write terribly unreliable scripts so please bear with me. I hope it will be back to normal soon but only time will tell. Katherine, go with God. Jon.

Katherine J, March 11, 1999 - Hi, My mom died this morning. It was very peaceful. She fell asleep and that was it. She had strong faith that she will be resurrected and live life in a new, peaceful kingdom home, and have good health and the peace of God that excels all thought. I thank you all again and wish you the best. I'm going to be check in in now and again because I will miss you. Love, Katherine.

Anna's March 11 reply to Mandy's March 10, 1999 - Hi, I just wanted to chime in on the point Jon made about a CHFer's immune system. My husband is in his late thirties and when he got CHF 3 years ago, the doctor told him it would take a year or so to get his immune system back to speed. It's been 3 years and it has not gotten any better. His inability to fend off a cold is one of the reasons it has been so hard for him to work. He would get sick when anyone working with him would get sick and then he would be out longer because he couldn't get over it. We are finding that our daughter is bringing home colds, that she and I don't get but he does. It is very hard to deal with. I will pray for your mom and that her lungs clear soon. Anna.

Candy's March 12 reply to Anna's March 11, 1999 - Hi, I found that I get more infections, which last longer. Also, I noticed that when I stopped taking the vitamin C that my doctor prescribed, I'd catch everything my grand kids would bring home. When I take the vitamin C, this doesn't happen. I hope you can find a solution for your husband's problem. It's tough on us when we get sick.

Jon 2's March 13 reply to Katherine J's March 11, 1999 - Hi, My condolences to you and your family, Katherine. Good luck to you.

Jon 2, March 13, 1999 - Hi, My Mom has been off Ticlid a few days now. She has become much more alert and active and is now eating again. I don't know what this means but she seems much brighter so for that we are grateful.

Joan, March 13, 1999 - Hi, I'm hoping someone can help me. I'm very scared. My husband was diagnosed with CHF several months ago when it was determined his bypasses were closed and he was not a surgical candidate. His cardiologist had him on different meds and needed to change them. My husband was able to do things taking it easy, including working. Of late, he has had difficulty sleeping and would have to sit up all night. The doctor increased his Lasix and Imdur. Last Friday, the doctor increased the Imdur and by Friday night, he had extreme shortness of breath and was like that all week. Yesterday was so bad he couldn't do anything. The doctor increased his Imdur again and by night, he got shortness of breath eating. I had oxygen delivered to the house for the first time and he was able to sleep. It's 5:30AM and I'm wondering if the Imdur could have something to do with his shortness of breath. Can anyone help me with this? Is it normal for someone to deteriorate so suddenly? I appreciate your response as I'm very torn and don't know where to turn. Thank you all.

Dina Rice, March 13, 1999 - Hi, I'm John Rice's wife (cardiomyopathy and CHF, EF 15, a-fib). We went to the doctor this week expecting to be making an appointment for cardioversion but were pleasantly surprised to find that he was out of a-fib and in a sinus heart rhythm. His heart seems to have shrunk by 1cm. He wore a heart monitor for 24 hours. Well, on the way home, he felt his heart go back into a-fib, so I am sure the monitor will tell what's going on when we go again. How common is going in and out of a-fib and is this causing added stress to his heart? We don't go back to the doc for a month but I assume they may call us in after they analyze the monitor results. Thanks Jon, for all you do and getting back to me so quick on my other question this week.

Jon's March 13 reply to Dina Rice's March 13, 1999 - Hi Dina, I do not have a-fib myself but I read a medical study last week about treating it and the researchers noted that some people went back into a-fib as soon as one minute after being succesfully converted, so I assume going into and out of a-fib is common. Jon.

Tricia H, March 13, 1999 - Hi, My mom had a clean bill of health on 3/9, then on Wednesday was taken to the ER suffering from what was diagnosed as a mild heart attack. Her cardiologist wanted to keep her for a few days and since then she has had fluid build up and her potassium is at a danger level. Her diuretics have been increased. I'm confused at to what is happening. With increased diuretics, wouldn't her potassium levels be very low to non-existant? I can only get a "we're going to try other meds" from her doctor. He looked at me weird when I asked for her EF and told me he was not sure. I'm seeing him later today at the hospital to ask again, but I'm afraid he does not want to tell us how bad it is. I know she suffered some more damage to her heart from the attack. I keep all of you in my prayers (especially Jon and his family) and thank God everyday for leading me to the site for support, and thank those who share their good news and bad. God bless, Tricia H.

Jon's March 13 reply to Tricia H's March 13, 1999 - Hi Tricia, As diuretic level is increased, potassium levels in her blood should be often tested and Rx potassium given to maintain a proper level. Too low or too high potassium levels can be very dangerous, so blood tests should be done at any diuretic or ACE inhibitor dose change, and every 3 months afterward, more often if she has had a past problem with it. Sometimes an ACE inhibitor increase will offset the potassium loss of a raised diuretic dose, sometimes not. Keep us posted! Jon.

Annie G's March 14 reply to Joan's March 13, 1999 - Hi Joan, I don't know about the Imdur causing shortness of breath but I do know that deterioration can happen quickly. Within about a week to 10 days, my husband went from being kind of tired to extreme shortness of breath all night. Neither of us really recognised it as being short of breath. He wasn't breathing fast or sweating, he just couldn't sleep. He would drive all over the county until the sun came up. His heart function at that point was so bad that nothing was getting the oxygen it needed. On top of that, his excess fluid went to his abdomen so extra Lasix wasn't being absorbed well through the stomach. Things didn't turn around even with oxygen, until he was admitted to hospital and had IV diurectics and inotropics (short term). Annie G, husband has DCM, EF 15-25.

Joan, March 15, 1999 - Hi, An update on my husband's deterioriation so quickly. Thank you all for your support. His doctor said he didn't think oxygen would help but I spoke to a respiratory therapist from work and he said it could. We brought in oxygen and he set it a 2L. My husband slept through the night Friday night for the first time in 2 months. He also slept last night with the oxygen through the night, awakening to go to the bathroom only. He is feeling 100% better. Where Friday he couldn't eat a salad without getting shortness of breath, he is not experiencing that severity. The doctor increased his Lasix as well but he hasn't gained any extra weight nor is he swollen. Does this mean that the oxygen might not work one night and he'll have to go to the hospital? If he doesn't display any of the symptoms of building up with fluid, does that mean he is anyway? Again, thank you all for your support and help. I don't understand this illness, and I don't think the doctors do either. Only peers know what we are going through - those who are ill and the caregivers.
     My husband says he is planning on going to work on Monday. He is still working. Don't ask me how. Thursday night he came home gasping for breath telling me he can't work anymore, and yesterday he was feeling much better after being able to sleep and said he needs to work for his sanity or he will become very depressed. I know I have to let him be his own person and it is very difficult for me at times because of how much I worry and how much I love him.

Candy's March 15 reply to Tricia H's March 13, 1999 - Hello Tricia, I had that problem where I was dehydrated because of the diurectics but I had potassium poisoning. They said I was getting too much potassium. Does your mom take a potassium supplement?

Gus R's March 15 reply to Dina Rice's March 13, 1999 - Hi Dina, Yes, a-fib can come and go as quickly and as often as a spring breeze in Central Illinois. That is a fact. Anything else I say here is merely my opinion, based on 6½ years worth of personal experience with a-fib. John's a-fib is probably not causing enough added stress to his heart for you to worry about at this time. His dox will likely address it as they go along. A-fib is not to be confused with v-fib, which as Tom D recently put it, "leads to daisy pushing" but it is not good and you should beware of anyone who dismisses it as trivial. I wouldn't want to start a spittin' contest here :~) but some days an old time a-fibber can wonder how bad daisy pushing would really be.
     You can find a lot of a-fib discussion threads in the Archives here at Jon's and the same is true at Cleveland Clinic's Heart Forum. Another site with some good graphics and text on atrial fibrillation can be found at but this is a commercial site, so it might not be impartial. Your husband's a-fib might simply be a symptom of another heart problem, which will go away if that other problem can be solved, or it could be the entire cardiac problem all by itself. Whatever your case, good luck. Gus R.

Bill D's March 15 reply to Joan's March 13, 1999 - Hi Joan, Imdur and other nitroglycerine meds shouldn't be causing your husband's SOB. All they do is relax his blood vessels to reduce the work load on his heart. The shortness of breath comes when he's not getting enough oxygen. All or any of a number of things could be responsible. Maybe his heart isn't pumping enough blood to take away the water in his tissues. His lungs may be filling with water. Maybe his heart isn't pumping enough oxygenated blood to satisfy his body. Water can cause SOB. Is he eating a real low salt diet? Anne is probably right about him needing a new diuretic or one that works. If you're having problems reading or printing any of the articles on this site for your doctor to see, just e-mail me and I'll try to help you out. Bill.

Marion M, March 15, 1999 - Hi everyone, Even with so much distress and pain, we have so much to be thankful for. A young mother named Carrie, age 29, with three little ones, ages 10 months to 4 years old, just passed away. She never knew she had a bad heart, just slipped away in her sleep with her husband beside her. The autopsy showed a heart that was enlarged beyond belief. They couldn't believe she had been functioning as well as she had. As you can imagine her physicians and family are just devastated. As I watch my husband struggle with his CHF, I thank God for the blessing of each day and the opportunity to make the struggle together. I hold my children a little longer and enjoy the real joys of life that much more. Please pray for Carrie's family with me. You are a special group of people and God is listening to your prayers.

Stefanie V, March 15, 1999 - Hello all, And thanks for all the great info. My mom suffered a massive heart attack on 2/4/99. We were told then that she has CHF and the doctors weren't sure of the cause. Her heart is only working at 10-15%. I have read The Manual and am very grateful for all the information. I think my mom is a Class 4. She can dress herself and get to the bathroom ok but what little things she can do are done followed by a lot of rest and her trusty inhaler. She is convinced that she is in the end stage of CHF. She has no appetite and can't hold down most of what she does eat. She has tossed the salt-free diet out the window. Her meds are premarin, provera, K-dur, plavix, aspirin, Accupril, Lasix, digoxin, albuterol inhaler and Lipitor. I have been reading everything I can about CHF and have been trying to tell my mom that what she is going through is normal. After having mom read The Manual, she had me buy a Chihuahua for her. The downside of the dog is that she doesen't have the energy for the pup. Mom had been a caregiver to her brother (she lost him to cancer in December) and now I am the caregiver to mom. Any suggestions or just words of encouragement would be greatly appreciated. Thanks for listening!

Virginia R's March 16 reply to Joan's March 13, 1999 - Hi Joan I don't have any real answers but maybe it will help to know that I'm thinking of you and your husband right now. This is an update on Dad, as well. As you know, he has been taken off Coreg as he simply didn't tolerate it with his diabetes. He had not been sleeping more than 2-2½ hours a night for several months. He's had extreme fatigue and slept a great deal after being released from the hospital earlier this month, but I was hoping that it was due to the sleep deprivation. He states that he feels as bad as he did before they placed him on Coreg, heart-wise. From what I can gather, he can't sleep nor can he sit up comfortably. He's asked us "kids" to divide up a collection of his and to "do it soon." This causes a sadness that I don't want to put into words. He's not complaining of SOB or fluid retention so I'm not sure what to attribute this to. He just says that he "feels so sick, like his heart isn't pumping enough blood and that he'd rather go suddenly than feel like this all the time." His next appointment is 3/19 for an echocardiogram. His diagnoses are CHF, cardiomyopathy, Left Bundle Branch Block, clot in his heart, diabetes and hypothyroidism. Any insight?

Robbie, March 16, 1999 - Dear Friends, It will be two months ago Wednesday (3/16) that my dear Greg passed away. I just wanted to drop by to say thank you to everyone for their prayers and messages. Things have been going surprisingly well for the kids and me. Of course, there have been the normal insurance issues but I've got them taken care of. A short note: Never put off writing a will and having all your bills and legal papers in order beforehand. Anyway, the biggest shock came when I received Greg's last hospital bill. It was "only" $266,000! The hospital said they had settled with the insurance and this was my share. Not to worry, we had a case manager through the Heart Failure Clinic who came to my aid. The bill was sent in error. I owe nothing. Thank goodness for the case manager and the insurance. Now that things are going a little smoother, I thought I would look into becoming a member of the people for transplants coalition, if there is such a thing. I have heard that in some areas people are allowed to go into the Department of Motor Vehicles and set up a booth. There they could enlighten others on the need for transplant donors. Does anyone hear know of such a group or better yet, is a member of such a group? If so, please contact me. Blessings to all.

Allan M's March 16 reply to Dina Rice's March 13, 1999 - Hello Dina, I have been dealing with a-fib for about 5 years now and have been cardioverted 4 times in the last 2 years. I can only say that a-fib is very unpredictable and it's not uncommon to go right back into it, although that hasn't happened to me. From what I've found out, it doesn't stress the heart, although my condition is different than your husband's. I am only 34 and only have the a-fib. The docs refer to my condition as "lone" a-fib, as it isn't related to any other illness. I hope this has been of some help. Good luck. Allan.

Hanna, March 16, 1999 - Hi everyone, I I have not found much info regarding an enlarged heart, which my husband has also. What causes this, what problems does that cause and can it shrink back to normal again? You guys are all so terrific. I read in amazement at your strength. Hanna.

Candy's March 16 reply to Stefanie V's March 15, 1999 - Hi Stefani, Encourage your mom to follow doctor's instructions and tell her to hang in there. I'm relatively new to CHF. I was first diagnosed in August of 1998. I was convinced that I only had a short time left at first. I thought I had maybe a couple of years. Now I know that I have at least 20 good years left. I feel so much better than I did when I was first diagnosed. My EF was 20 and now it is 40, give or take -8/+8. My doctor is optimistic I will improve even more by my next 6 month check up. Sure, it's tough to start a different routine than one is used to but after awhile, looking at labels for sodium and taking a handful of medication isn't so bad. It's better than the alternative. I haven't smoked since August and that's pretty good for a person with a 30 year habit so good things do come out of all this. I was tired, depressed, and felt there wasn't any thing left for me. Guess what, there is. I don't know when the transformation occurred but I do know hooking up with Jon's Place has helped.

Lee R's March 16 reply to Stefanie V's March 15, 1999 - Hi Stefanie, It must be difficult to tell with your Mom what is asthma and what is CHF. When I read your post about her having no appetite, I question if digoxin levels have been tested? That is a drug that can cause nausea or loss of appetite if there is too much of it in the body. Since your Mom suffered the heart attack in February, I would think she needs time to recover and while she may not have the energy for a puppy, at least when the little one wants to curl up, they can provide great comfort. I hope you are holding up ok, being the caregiver to your Mom and the new pup! I have cardiomyopathy and am 59 and recently had a sore throat/cold, and it has taken 6 weeks and I'm still not up to par or where I was. That was only a cold! Tell your Mom to hang in there and rest, but to not give up. We are all pulling for her here at Jon's. Bestest, Lee.

Carol, March 16, 1999 - Hi, I have been checking out this Website off and on for several months, and have finally decided to get involved - mainly because it's so hard to get answers to all our questions! There is such a wealth of information here! My husband was diagnosed with CHF (severe left ventricular dsyfunction) last fall. He'll be 48 the end of this month. His EF last fall was 18-20% by echo. He's on all the current meds, including Coreg. He had a heart cath a couple of months ago and it showed his EF now at 15-17%. He has quite a heart history: heart attack about 5 years ago, pacemaker insertion about 2 years ago, several caths, 1 balloon angiogram, and 1 attempted balloon angiogram. He is truly disabled. He is always extremely tired, has shortness of breath, etc. We officially filed for Social Security Disability about a month or so ago.
     Anyway, my main question is, He has severe upper stomach pain mainly after any kind of exertion. The doc so far can't find anything; no ulcer, infection, reflux. The pain itself is so disabling. The doc thought it might be side effects from one or more of his meds, which include Coreg, Lasix (generic), Potassium, Zocor, Ismo, Lanoxin, Zestril, and Prevacid. No one can determine exactly what the upper stomach pain is from. Has anyone else experienced this? I'd really appreciate any info and am hoping that my husband will want to get involved in this CHF support group through my involvement! Thanks to all of you and, thank you, Jon. You have provided a wonderful service to everyone involved here.

Joan's March 16 reply to Stefanie V March 15, 1999 - Dear Stephanie, By educating yourself and learning all you can about CHF, you are doing the best you can. Often when we understand something, it gives us a feeling of empowerment and when we attempt to explain what is going on to the one who is ill, they are still left being ill and not caring about identifying with others. Not all CHFers are able to handle this Website but for those of us who can, it is a lifesaver. Give your mom support and know there are good days and bad days. Validate her feelings and assist her gently, allowing her to do what she can. Most importantly, give her the time to come to terms with the changes and limitations in her physical ability. I know you will both come out stronger. Set up a support system for yourself and most importantly, let your mom know you love her in a million different ways as much as you can.

Joan, March 16, 1999 - Hi, Thank you all for your ongoing support. My husband is able to sleep through the nights (so far) with the oxygen. His shortness of breath is still very bad and the doctor heard something in his subclavial artery during our visit yesterday. My feeling is that this is why his throat has been closing up and why his breathing has deteriorated so quickly. The new findings by the doctor are coinciding with my husband's new symptoms. For now we can't treat anything too aggressively because he is not a surgical candidate and the angiogram will put him at great risk for kidney failure and stroke, to say the least. We're taking one day at a time. His Lasix has been upped. I'm sure when he goes for his lab work, his BUN will be very high and that will pose another problem. Does anyone know of any diuretic which is not as hard on the kidney (he only has one) but still does the job? I'd like to have this info on hand for when I need it. Thanks everyone. God bless.

Jon's March 16 reply to Joan's March 16, 1999 - Hi Joan, Inotropes can greatly increase diuresis over the short term. Phosphodiesterase inhibitors like amrinone (Inocor) and milrinone (Primacor) increase the heart's efficiency and thus aid the kidney(s) in getting rid of the body's sodium. Primacor info can be found at I don't know how safe these drugs are in a patient with one failing kidney, but there is info available if you can find the time. Other inotropic drugs you may want to research are dobutamine (Dobutrex) and dopamine. I'd like to help more but I am currently having problems with a server that hosts the type info you are looking for. If it comes up soon, I'll let you know. In the meantime, have you asked local pharmacists to research this in their databases? They are a very valuable resource! Jon.

Holly, March 16, 1999 - Hi, My daughter is two years old and has had CHF since she was 11 months old. I was wondering if anyone knows of younger kids who have this disease and if anyone experiences chest pain at night. Some nights she wakes up screaming and won't let anyone touch her. All she will say is it hurts and grabs her chest. It only happens about every 2 months or so. The doctors just kind of dismiss it and I don't know what to do for her when this happens. Any suggestions?

Annie G's March 16 reply to Dina Rice's March 13, 1999 - Hi Dina, When I worked with patients on the telemetry unit, we would see people go into a-fib. Sometimes these people wouldn't even be aware of it. It often had to do with how fast their heart rate was. A controlled atrial fib is usually considered to be any speed less than 100 beats per minute. Uncontrolled atrial fib is considered to be a rate greater than 100. Although some people live their lives in continuous atrial fib without severe problems, it is better if the doctors can get them back to sinus rhythm but this is not always possible. It's best if the heart can be converted back to sinus rhythm and sometimes the longer it is in atrial fib without treatment, the harder it is to convert.

Bill D's March 16 reply to Carol's March 16, 1999 - Hi Carol, Your husband may have a hiatal hernia along with his acid reflux problem. That's where part of his stomach is sticking up through his diaphram. Straining will make it worse. Is he constipated? My son has that and is on Prilosec, which is similar to Prevacid except it lasts all day and costs like crazy! He raised the head of his bed 8 inches and doesn't eat anything for 4 hours before going to sleep. An Ear, Nose and Throat man can find out for him. Bill.

Mary, March 17, 1999 - Hi, I am taking care of my mother who is 81 and just diagnosed with CHF. Her EF in the hospital was 10%. Six weeks and six medications later, her EF is 13%. They'll do another test in May. Does anyone know of someone her age who has shown greater improvement with the medications? Or is this to be expected in someone her age? Also, what is an a-fib?

Candy's March 17 reply to Carol's March 16, 1999 - Hi, I think Bill is on the right track when he said to not eat anything several hours before going to bed. Does your husband eat something with his meds? I thought I read that Coreg needs to be taken with food. I had severe chest pains at times. I was at the ER on Thanksgiving. It was a non-steriodal anti-inflammatory I was taking for my back. Once I stopped taking that, I was fine. Aspirin can be an irritant. Caffeine or fried foods can also cause stomach pain.

Tina, March 17, 1999 - Jon, Hi, to you, and everyone. I haven't posted for quite some time, but have kept track of all that is going on. You sound like you are all hanging in there and still having good days and bad. I will keep praying for you all. I have been really busy with taking care of my dad, and being sick myself. My Aunt passed away and my cousin got killed all within the last few months, so it has been a very depressing start to a new year, but faith keeps me going, and lets face it, God is the only one who understands all we go through. I am really sorry to hear of the death of Katherine's mom. My thoughts and prayers are with you and your family.
     I really need some advice on my dad. He has improved a lot from the last time I posted. He finally talked to his doctor and got things changed like you suggested and it seemed that he was doing okay. Then the other night, he suffered a mild heart attack, and wouldn't go to the hospital. He is now getting what he decribes as thumping in his head. It is keeping him up and making his life unbearable. He told his doctor but they can't seem to come up with an answer. In fact, the doctor didn't even act like he was concerned with him having a heart attack. I am at my wit's end.
     Has anyone had this thumping? I would really appreciate some advice on the matter. I know you are all dealing with your own stuff and I hate to bother you. I feel like I have to deal with this on my own and sometimes, I get overwhelmed. I would so appreciate someone letting me know if this sounds like something they have experienced or heard of. God be with you all.

Deb J's March 17 reply to Carol's March 16, 1999 - Hi Carol, When my husband Frank, was suffering from CHF, he would sometimes experience pain in his upper stomach. He mentioned this to his docs and they suggested taking a nitroglycerin tablet when it occurred. If the pain went away, they could more easily assume that it was angina. If it didn't, then possibly acid reflux or hernia like Bill says. Deb J.

Bill D's March 17 reply to Tina's March 17, 1999 - Hi Tina, Let your Dad know that we have lots of "thumpers" out here. Only one doctor has ventured an explanation so far. He says the thumping may be because our hearts have grown bigger and there isn't any room. They're bumping into our lungs or our diaphragms and we feel them and hear them. I notice it most when I lay down on my back at night to sleep: Thump, Thump, Thump. If I could see a clock, I could take my pulse. I've been thumping along for years. Bill.

Bill D's March 17 reply to Mary's March 17, 1999 - Hi Mary, It generally takes longer than six weeks for the medicines to work, more like 6 months. You can find answers to most of your questions right here at Jon's Place. Click on "Site Index" at the top of this page. Start by reading "The Manual." A-fib means Atrial Fibrillation. The atrium is the chamber just above the ventricle. It gets out of sync with the others and isn't helping the heart pump. They might give it a shock to get it back in synch or have her take medication. It's bad but can be lived with for a fairly long time. Bill.
Jon's Note: A-fib also increases stroke risk

Susan Rose, March 17, 1999 - Hi, I am now faced with the hardest thing in my life. My father, who has gone through 2 bypass surgeries, is now in CHF. Two weeks ago, his doctor told us to go to make his final arrangements. Within these 2 weeks, I have gone through every emotion known to man and then some. He was admitted into the hospital 9 weeks ago with pneumonia, then went into CHF, and this morning they released him. They released a man who cannot walk, cannot sit for any length of time, cannot even get himself to the bathroom. Worst of all, they released him to go home and be cared for by a 73 year old frail 80lb woman. Of course I am there to help but where are the doctors' minds for allowing him to go home in this condition? I think the reason they let him go home was because he is not the most pleasant person on this earth. OK, he never was, but his illness has just made it worse. My reason for writing is to ask if anyone has had the experience of lower legs and feet swelling to at least 5 times the norm. The doctor has him on 320mg of Lasix a day. I have read that a side effect is confusion and am wondering if anyone else has had this happen. Thanks for letting me vent against the great medical profession.

Virginia R, March 17, 1999 - Hi, Dad had a 5lb water gain today. He can't take too many steps without being winded. I'm calling a CHF Clinic in San Antonio tomorrow and will get a room ready for him here. It may not be the best situation but he can't drive to Dallas - 2 hours away - and at least here he won't have to pay for a motel. Thanks for your prayers, they will be appreciated. Tina, it seems like someone is always around to offer a suggestion or if nothing else, support. I'll pray for you and your Dad.

Tricia H's March 19 reply to Candy's March 15, 1999 - Hi, Thanks for the insight. My mom's doctor put her on K-Dur in the ER to lower her blood pressure, not realizing or not knowing it was raising her potassium level. Thank you too, Jon, for pointing me in the right direction to question the involvement of Ace inhibitors. He changed the med to another and now she is at a safe level. Also, she was on an anti-inflammatory for spinal stenosis which apparently caused more chest pains after the heart attack and immeasurable stress on her. I get so angry when I think of all the complications that are caused by wrong med combos and seeming lack of knowledge by physicians. After 6 days of more tests, and trial and error, my mom is back to where she was, with, in the doctor's term, minimal damage to her heart. I'm trying to be grateful for what we learned and that was the path to be traveled and she is stable for the time being. This illness is so amazingly sensitive. To fix one problem, another crisis is created. God bless you Jon, and this site! Tricia H.

Carol, March 19, 1999 - Hi, Thanks to everyone who replied to my first post. I'm hoping to get my husband interested by reading the replies and seeing that he might get some help from the heart forum. I feel that I can get a lot of information and support from this site, and take some comfort in that. On the other hand, my husband is overwhelmed by it all. Right now it's all too much for him when he gets a lot of info on CHF. In the meantime though, I'm going to keep checking things out. We're having his records sent to Cleveland Clinic Foundation. Has anyone been there for a consult? Or, to Texas Heart, Buffalo General, or Mayo? I also checked into those hospitals. I'd really be interested in knowing if anyone has been to any of those facilities and discussed transplants, Batista, LVADs, etc. Thanks!

Candy's March 19 reply to Susan Rose's March 17, 1999 - Hi, Didn't the hospital social worker contact you? Is home health available? These might be some things you will want to look into. Also, if he's at the end stage of CHF, he may retain more water. Contact his doctor as he might need an increase in his Lasix or need a change in his diuretic. Keep the faith and our prayers are with you.

Ruthie A, March 19, 1999 - Hi everyone, My mother, who is 80, was doing very well and showing great signs of improvement since she saw a cardiologist a few weeks back. However, two days ago she developed severe chest pain and suffered all night, taking nitro tablets but not telling the nurses at her assisted-living facility. Finally, the early morning nurse suspected that mother was in trouble and called the doctor. Mother was taken by ambulance to the ER and admitted with the precursor of a heart attack. Right now, the doctors are waiting to see if she will have one or not. They suspect that if she does, it will be a bad one. In the meantime, they are experimenting with various drugs to stabilize her CHF and chest pain and all. She will be in the hospital for several more days, at least. I gather from the doctors' actions and considerations that mother is not doing very well and they would not be surprised if she did not survive this experience. They even asked her about resucitation, did she want it or not. After a long discussion, they all agreed to put a DNR note in her records. I agree but at the same time, I am really sad.
     It is so hard to realize that your parent, the person who gave you life, is dying and will not be around forever. Of course I don't want her to suffer but I am not sure I am ready to give her to the Lord yet. I guess we will have to cross that bridge when the time comes. My prayers go out to all the rest of you who are going through the same thing. It's tough, isn't it? How glad I am that I have support from family and friends, and that God is close by, giving me peace. Ruthie.

Jon, March 19, 1999 - Hi, I am way behind on posts and e-mail. Last night was the night before my daughter's term paper was due so she owned the pooter all night. <G> I'll do my best to catch up tomorrow. If your post isn't up yet, it will be soon, I hope. Jon.

Anna's March 19 reply toCarol's March 19, 1999 - Hi, My husband Edward is 36, and has a lot of the same problems as your husband. He is also taking a lot of the same medications as your husband. He seems to always be sick to his stomach. I think that when you start putting all that medicine in someone and include the fact that CHF can sometimes cause fluid to collect on the stomach, it will cause this. Edward and I have a doctor's appointment today and I plan on asking more about this. I'll let you know if I find anything out. I will pray for all of you. God bless. Take care. Anna.

Tina Deibel, March 19, 1999 - Hi Bill, Once again, I have to say thank you! I know that maybe explaining this to him will help him understand what he is experiencing, and why. I know it is not easy to explain bad things to good people but it still helps to know what is happening to your body. I hope all is well with you and I think what you are all doing is such a great way to show you care about each other and all who write in. I sure wish I could wave a magic wand and make all of your problems go away. You deserve to get many awards as far as I am concerned. Anyway, God be with you all. Jon, I do think your family has to be worth their weight in gold. Being a wife and mother myself, I know that it takes so much time away from them and yet, they understand and let you run this site. They are truly heros and I hope they know this. Virginia, thank you for your prayers and thoughts. They are so appreciated. I will keep in touch and as always, read what is going on with all of you. Tina.

Bill D's March 19 reply to Susan Rose's March 17, 1999 - Hi Susan Rose, Have you asked that doctor why he hasn't recommended your dad be admitted to hospice care? If he told you that your dad had only a few weeks to live, it would seem the best thing to do. 320mg Lasix is an awfully big dose. I was reading an article that I probably found through Jon's Links, that it was better to use 2 different diuretics instead of big doses of just one. Doctors have reason to be fed up with the politicians and, by association, the public in general. In order to "fix" Medicare, the politicians took the path of the least resistance; not angering a big block of voters or turning off political contributions. Doctors don't represent a large voting block and they are perceived as "rich" by the average public. As a result, Medicare reduced what they "allow" by 15%, then 40% and now another 15%! We'd all be upset if our salary was cut 62% and wouldn't put up with much from patients who didn't know or care. Bill.

Jon2, March 19, 1999 - Hi there everyone, My mother has again tricked the medical profession by living, and is for now, improving. The health nurse who comes every day is just shaking her head as she did not expect her to live last week. Mom is now phoning up her friends to drop by for tea. Her voice is much stronger and she is talking fast again. She still sleeps a lot and remains on oxygen but she's walking around and wants to hit the malls again.This is only a week after coming off Ticlid so I think the drug must have really affected her. By the way, we got her one of those electric adjustable beds around the same time. She loves it. It seems to really make her sleep more restfully. Her GP wrote a note recommending it so we are going to see if it's tax deductible. Keep the faith, everyone, and enjoy the good days. We are.

Dina Rice, March 19, 1999 - Hi, Just a few new questions about pacemakers and burning off a part of the heart. What is the burning called? I keep finding info on LVADs but not plain old pacemakers? Any ideas where to go? Or personal experiences on the effectiveness of a pacemaker with a-fib? John's Holter monitor results showed that his heart was often over 200. They thought the meds were working because when we were actually in the office, he was out of a-fib and into a sinus rhythm but within the hour, he was back in a-fib; In his opinion, worse than before. So, when our doc gets back into town Tuesday, I assume we'll be called in to discuss new options, the nurse mentioning the above as possibilities. I guess we know now how we'll be spending Spring Break! I hope Linz's paper went well. I'm glad I am personally done with that stuff and we have about 10 years before we have to think of that with our Hannah! Thanks for all you do. You know I am now addicted and often late to work!

Jon's March 19 reply to Dina Rice's March 19, 1999 - Hi Dina, Once again, I am short on time so I will have to be brief. First, try here for basic pacemaker information: The burning you refer to is called radio-frequency ablation or RA. It is done during an EPS or electrophysiology study. Gota run, Jon.

Candy's March 19 reply to Tricia H's March 19, 1999 - Hi, It sounds like your mother is doing a little better. That is good news. She is lucky to have you.

Lee B, March 19, 1999 - Hi! This is the second time that I have written on behalf of my husband. The first time was as a result of him having trouble sleeping. He has since been to a sleep clinic and it has been confirmed that he has sleep apnea. We are now waiting on the "air pump" to be provided (free, thanks to our goverment health plan). What we would like some help with this time, is in regard to CoQ10. We keep reading about the benefits but our doctors are not familar with the product, although we do see it in the drug stores. I would appreciate hearing from anyone that is using this pill. Is it being prescribed by doctors in the USA or Canada? Hopefully, some of you can provide us with success stories that we can show to our doctors. Al, my husband, is on a multitude of drugs but his EF rate has reduced from 40 to 20 over the last year. He is also a diabetic and his kidneys are begining to fail. Living on the prairies in Canada, our access to a lot of professional help is limited. For example, a heart replacement is not an option. So we would appreciate any responses confirming the effectiveness of CoQ10. Take care everyone, from your neighbours to the North!
Jon's Note: Have you checked out Nutrient Stew and the links at the Links page ?

Lyliss, March 19, 1999 - Hi to everyone, We live in Canada and my husband who is 49, soon to be 50, is suffering from CHF. He also has an enlarged heart. He had his first heart attack January 23, 1999 and it was very major, leaving him with 37% function. Over the course of the last few weeks, he was flown air ambulance to St. Paul's hospital in Vancouver and they did test for a heart transplant. After a series of tests, they decided he was a good candidate for the Batista operation which will take place in approximately 6 weeks. Our whole lives have changed in such a short time. It is hard to comprehend everything. He just came home from Vancouver yesterday and is very depressed today. That in it's self is very hard to overcome but it is so important to have a good view on life. The operation is very frightening because it is so new but he does not want a transplant if there are other options. We were told that this is not as risky as a transplant because he does not have to worry about rejection. I am strong for him and pray to Jesus to keep him safe until surgery and to guide the surgeon's hands to success.
     Life changes so quickly and our most precious gift of health is mistreated until it is almost too late. He was quite a heavy smoker and liked to work 6 days a week, so this has knocked him into shock. He wants some of his old life back minus the smoking and less work. I pray this operation will offer at least some back to him. Thanks for listening and if anyone knows anything or anyone who has had this procedure, please let me know. Thanks.

Carol, March 20, 1999 - Hi, Thanks for the helpful information. Anna, please let me know what the doctor says about your husband's stomach problems. I am beginning to think that my husband's stomach pain is from both the meds and fluid retention in the stomach, which I didn't realize CHFers got (thought they just retained in the ankles).
     Lyliss, my husband is very much hoping to qualify for the Batista surgery. He will be 48 end of this month. In fact, I just Fed-Xed his heart cath film up to Cleveland Clinic. We want to go up there for a consult. He is afraid of the heart transplant route and is hoping to qualify for the Batista. We'll have to wait and see. It seems from the reading I've done on the Web though, that heart transplant survival rate statistics are very good now. I was amazed. I would very much like to hear how his Batista surgery goes. Will it be done at St. Paul's?
     How did your husbands acquire CHF? My husband's cardiologist thinks he had either a viral infection or small vessel disease, or both. His degree of coronary blockage does not begin to account for his enlarged heart and severe left ventricular dysfunction.
     Jon, I know what it's like to have just one computer in the house! We have two kids and everyone wants to be "online" and for different reasons. Thanks for your help! My husband's life is now divided into "good days" and "bad days." Is that how it is with most people with CHF? We celebrate the good days and don't dwell on the bad ones.

Tricia H, March 20, 1999 - Hi everyone, Because of this wonderful place Jon created, I am finally asking the right questions and actually getting some honest answers from the doc. I found out that my mom's EF at diagnosis in September of 1998 was an 8, and now is a 20. If I knew then what I know now,... Anyway, we had a discussion about one med - neurontin (gabapentin) - which is a anti-seizure medication. My mom has no history of seizures and with the confidence I've gained here, I wanted to know what the deal was. He has her on it for her spinal stenosis because he said it works well for chronic pain. I asked him why he had her taking a 24 hour dose in 12 hours and if he was aware of the side effects (which are chest pains, fainting, fatigue, weakness in the limbs, stiffness). I did not even give him a chance to respond and I continued to tell him it seemed it could be making the CHF symptoms even worse and probably could be the reason she has been falling. He agreed and on Thursday we spread the 900mg over 24 hours.
     Today when I got home from work, she told me she had called a church group (senior program) and was picked up, stayed for 4 hours and made some crafts for a penny social they are having. She was not gasping for air and her whole outlook is improved. I know it's only one really good day but she actually felt worthwhile today. I hope she has many more. Thanks to all, you are in my prayers. God bless. Tricia.

Carol, March 20, 1999 - Hi, I have another question. What is DCM? Does one have to have CHF to have DCM? Just wondering. It's a term I'm not yet familiar with.

Bill D's March 20 reply to Lyliss' March 19, 1999 - Hi Lyliss, You can find more about the Batista Procedure if you do this: Click on "Site Index" at the top of this page. In the "CHF Treatment" box click on "CHF Surgeries and procedures" and then on the articles about the Batista Procedure. From what I can find, Canada is doing more of them than the United States. Everybody's whole life is changed when they have CHF. You will have to keep an eye on him. It's reasonable and normal to be depressed when your life gets turned upside down. Is the hospital that will do the Batista Procedure a center that can do Left Ventricular Assist Devices? You might want to find out. Bill.

Pearl's March 20 reply to Jon's March 19, 1999 - Hi Jon, May I congratulate you for the wonderful service you are giving? I have been so involved in reading their posts (I belive they are called) that I have not taken the time to try to post one myself. It is my husband Joe, who has cardiomyopathy. His EF is 10 to 15. The doctors have told us for 5 years that he would not make it another 6 months. At the present, he is going to the University of Rochester Medical Center for the Best Study (bucindilol). He has been on the med since 1996. Previously he was in the Vest Study but they cancelled that because more people were dying than it helped. He also was taking the med and not a placebo. I have much more that I would like to share with all of you. The doctors have called him the "miracle man." Although his condition has worsened recently, we are still hopeful that some new miracle will happen. My miracle was in getting on the Internet and finding this site. Jon, God bless you for your great contribution to those of us who have felt so alone. I hope I will be welcome to join in.

Caroline S, March 22, 1999 - Hi Everyone, Thanks for the e-mails of support. Thanks Jon also, for your reply post. Unfortunately, my mother suffered a fatal arrhythmia or a heart attack the day after my last post. We aren't quite sure what precipitated this. Perhaps it was just her time and only the force of her will and optimism had kept her alive and in pretty good shape for the past 5 years following a mitral valve replacement operation that went awry and led to a heart attack. We do know that during one of the recent hospitalizations, the ER doc said that he had never seen a heart as enlarged as hers. Even with that, she was functioning as a class 3 and making plans for the future. While we grieve, we also celebrate her love for life and the 5 bonus years we had with her. Actually, we had 35 bonus years, because she was the 62nd person in the world to have a mitral valve clean-out operation way back then.
     While I, my siblings, and my father have found the past 2 weeks incredibly difficult, I did want to tell you that even with death, there have been many beautiful moments filled with grace, to give all of you who occasionally fear the end some hope. In the first few hours after her death, I was walking outside with my father and brother and was saying something about my Mom, that was making me sob. Right then a hummingbird, one of my mother's favorite birds came up, flying up at eye level, hovered right near my face, then my father's and then my brother's and then darted off. We all were dumbstruck. It was as if she was saying, now I'm not struggling to keep up, I've got wings. Also, at her wake, all the illness had been erased from her face, and she was restored to us as she was 6 years ago. I know this sounds odd but my whole family was jubilant.
     Finally, during one of her hospitalizations, she had remarked to one of the nurses that she'd gladly donate her organs when she died (though she wasn't planning on going anytime soon), but that she doubted they would want anything. The nurse told her that there is a need for more than just hearts and lungs. With this in mind, we contacted the organ donation people at the hospital while she briefly was on life support. They said that they probably would be able to use her corneas to restore sight to one or two of the over 500 people in Arizona on their wait list. While waiting for the final EEG, she deteriorated so much we feared that one of her last wishes would not be fulfilled. Three days ago, we got a letter telling us that through Mom's donation, they has successfully restored sight to one person. With that news, we all cried tears of joy! Now a part of her lives on through us and through the person who received her corneas. I hope as well that her courage somehow makes it to all of you. Now that our prayers are no longer needed for her, we will direct them to all of you. Additionally, we requested that friends and family members make contributions to the American Heart Association. Hopefully, this in some small way will better your lives. Thanks for all the help over the years! Caroline S.
     PS. My Dad wanted me to send his regards as well and wishes for good health to all of you.

Jon, March 22, 1999 - Hi everyone, I confess; I just let the forms stay down until the server staff got them fixed. I went to the library with my family, checked out some books and thoroughly enjoyed some reading. I have contacted my forms server to see if they foresee any future weekend-long problems, since this is the second out of three weekends they have gone down. If they do, I will look for another server.
     Due to the new exercise program I am on and my compliance with my doctor's wishes that I try to be more generally active, I am totally pooped out. I am taking a week off after posting today's posts and will try to be back Tuesday, March 30, 1999. Otherwise, I am gonna give out completely, which won't help anybody. The faster walking pace has been especially hard on me. Hopefully, the next week will see me start to gain some muscle tone, which will reduce my fatigue. At least, that's the plan. <G>
     I encourage everyone to use the "site search" located at my Site Index page, The Archives page and the Medspeak page. It searches the whole site, and works very well for a free search engine. When it takes you to a particular Archived page of the forum, you can use the descriptive headers at the top of the page to see which message(s) might apply. It works for me. Jon.

Rita, March 22, 1999 - Hi, My dad, age 86, has atrial fibrillation and congestive heart failure. He will be having a pacemaker inserted and I'd like to know where I can get information to help me further understand the procedure: how it's done, what it does, risks, etc. If you can send me to an appropriate Website, it would be appreciated. Thanks.

Carolyn B, March 31, 1999 - Greetings. This is just an update on my daughter, age 12, with DCM. She still has the cough, which she has had since September. They put her on 50mg Prednisone for 7 days but nothing has changed. I pushed to repeat the echocardiogram in April, so hopefully the cough will resolve or some med changes will take place. I am thankful for the information on this site. Thank you all.

Dina Rice, March 31, 1999 - Hi, I just wanted to let you know that John is having a defibrillator put in Monday morning. I have really appreciated all of you who wrote us with info about this. I still am a bit concerned that the doctor didn't tell us anything about it, but you all have helped tremendously. Please say a prayer for us Monday. Dina.

Kris, March 31, 1999 - Greetings. My significant other has CHF, and after a real snakepit of problems, he is finally home and doing better. After a month's wait (this is a terribly rural area, the docs still use leeches and stone clubs), he finally got an echocardiogram. Two weeks later, he finally saw a real live cardiologist. His EF is guessed at 30-35%. He is morbidly obese, so they can't be too accurate. The cardiologist promptly put him on a very low dose of Altace - 1.25mg - low because he suffers from low blood pressure. The cardiologist told us point blank to apply for SSI, because even with the ACE inhibitor, and providing he loses a great deal of weight and undertakes a course of physical therapy and exercise, we are looking at 2-3 years before he can even think of working again. He is a professional chef. Here's the problem I'm hoping one of you can help me with: His primary care physician had not looked at any of the cardiologist's remarks and told us he reported to Social Security that he can return to work in 60 days. Any suggestions as to what to do about this?
     We only have contact with the cardiologist through the primary physician's office. One has to go through them to make an appointment. The cardiologist is only in this area once every 2 weeks. The primary physician says he needn't see the cardiologist again for 4-6 weeks. What will Social Security do when they receive 2 such conflicting reports? Has anyone experienced anything like this, and if so, how did you approach the pencil pushers to deal with it? Thanks in advance for any advice.

Charlotte, March 31, 1999 - Hi, My husband was admitted to the hospital 2 days ago with trouble breathing. He has an ICD (pacemaker/defibrillator) installed in his chest. They discovered he has atrial fibrillation and they started him on Coumadin. They said he will need his blood checked twice a week. He is now also on Amiodarone. I know he's the one going through all this, but I feel like a basket case. My husband thinks I should go back to work, but all I would do is sit there and cry. I'm scared. He was on Coumadin back in the early 90s and he almost bled to death and now they say he has no choice but to go back on it or he would be dead in 6 months.

Candy's March 31 reply to Kris' March 31, 1999 - Hi, I have one thing to say: Find a new Primary Care Physician fast. Good luck.

Dan B, March 31, 1999 - Hi, We have a 2 year old son with cardiomyopathy. We are feeling helpless and alone. Are there any other families who have a small child in heart failure? A month ago, Caleb caught a cold and you all know the rest. His tummy was swollen like a basketball and he was napping 24 hours a day. He is home with an EF of 21% and a leakage rate that went from 4 to 1 just this week. He was taking dopamine and dobutamine. Now he is on digoxin, Lasix, captopril and Coumadin. We would love to hear from anyone who can relate. Our pediatric cardiologist is arranging a field trip to Loma Linda to meet with a surgical team and discuss the procedures of heart transplant. God bless you all. Dan.

Susan Rose, March 31, 1999 - Hi, Since the last time I wrote, my father was readmitted to the hospital because with all the Lasix, Aldactone and Zaroxolyn, he dehydrated. In a one week period, he lost over 55lbs, and the visiting nurse finally convinced the doctor to put dad back into the hospital for IV fluids. Dad has lost all ability to walk and can barely sit up without falling backwards. The doctor now thinks he may have kidney disease and he is on insulin because he had to take steroids for his lungs. He is also on Coumadin, Valium, tylox, cardizem, morphine and surmintil. Can someone tell me if all these medications seem normal to them? They are giving him no therapy at all and just leave him alone to think about his condition. I try to move his legs to get his muscle tone back, as he has none but he refuses to eat, and he is just wasting away. Please someone come up with something, I'm at the end of my rope and don't want to do anything that would be counter productive to his care, but I see no care given at all. Thanks.

Jon's March 31 reply to Susan Rose's March 31, 1999 - Hi Susan, I can only make one real sugestion: get another opinion from a doctor competely unrelated to the ones he sees now - a different practice, different clinic and if possible with different hospital affiliations. He may be taking too many meds or an incorrect combination and this may be making him feel worse instead of better. They may also be depressing his appetite and his mind. A pharmacist should be consulted about this if at all possible. Aldactone at low doses does not function as a diuretic but prolongs life in CHFers. I take 25mg a day for this reason. You can get a lot of drug info yourself also, by using the links at my Links page.
     Wasting can occur with end-stage CHF but like I said, it may be the meds or depression caused by improper medical care and his serious condition. If he is in Class 4 CHF, perhaps hospice care should be considered. This can be done at home and would probably be more effective at improving his attitude than medical therapy alone. Contact the social worker at the hospital he uses and she can point you to the local hospice care group. Jon.

Deb J's March 31 reply to Kris' March 31, 1999 - Hi Kris, I would seriously consider finding a new primary care physician. Perhaps ask the cardiologist that you saw if there is someone he can recommend. My husband's primary care physician's office considers themselves a glorified referral service for us. They basically just send 3 referrals for the cardiologists at a time and allow us to visit them as often as we want, no questions asked. You could also ask Social Security if your significant other can be seen by one of their physicians. Supposedly, they do not consider your doctor's opinions when they make their determinations anyway. Or so that's what they say. Good luck, Deb J.

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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