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

Dega's 4-2 reply to Peggy's 3-31     our diarrhea problem was diabetes
Judy H's 4-2 reply to Peggy's 3-31     diarrhea problems, shortness of breath
Jon's 4-3 reply to Todd's 3-29     has he had heart surgery?
Beth C 4-5     update - good news
Carolyn 4-6     update - good news
Leslie Morris 4-6     a-fib treatment timing question
Jon's 4-6 reply to Leslie Morris' 4-6     one opinion
Todd's 4-6 reply to Jon's 4-3     my dad's situation
Jon's 4-6 reply to Todd's 4-6     some possibilities
Bill D's 4-7 reply to Todd's 4-6     sleeping, coughing
Peggy's 4-7 reply to Leslie Morris' 4-6     getting heart rhythm cardioverted
Lee R's 4-7 reply to Leslie Morris' 4-6     a-fib experience
Nadine 4-9     is my husband okay? getting no answers
Jon's 4-9 reply to Nadine's 4-9     some tips and suggestions
Todd 4-9     thank you
Ben B's 4-9 reply to Jon's 4-9     testing and diagnosis
Jon's 4-9 reply to Ben B's 4-9     testing and diagnosis
Linda Grant 4-10     over the counter drugs questions
Jon's 4-10 reply to Linda Grant's 4-10     over the counter drugs
Kathryn 4-10     CHF questions
Jon's 4-10 reply to Kathryn's 4-10     CHF answers
Cathy Cobb 4-10     where to buy an oxi-pulse machine?
Sharon B 4-10     update, seek comments, Myovive question
Kim T 4-10     anti-inflammatories, ACE inhibitor questions
Lillian 4-10     update on my dad
Trish 4-11     fatigue, heart rate questions
Dawn 4-12     my grandma is very sick, intro
Connie M 4-13     update, prayer request
Natalia 4-16     seek help in Toronto
Autumn's 4-16 reply to Ben B's 4-9     update, dealing with a weak heart
Susan B 4-17     dealing with newly diagnosed CHF, dox & more
Mary Lou's 4-18 reply to Susan B's 4-17     doctors, coping & more
Emily 4-18     my mom's cough, thanks
Emily 4-20     update, my mom's cough, thanks
Cindy 4-24     is my grandma in end-stage CHF?
Grady 4-25     fluid in the lungs questions
Kathryn's 4-25 reply to Cindy's 4-24     supporting our loved ones
Ellen 4-26     has anyone had such episodes?
Donna 4-27     seek advice, Rhode Island dox & more
Karen S 4-28     intro, second opinions
Tuesday S 4-28     need help with young son's nightmares
Carolyn S' 4-28 reply to Karen S' 4-28     maybe he's retaining fluid
Bill D's 4-28 reply to Karen S' 4-28     he needs a CHF specialist
Hope M's 4-30 reply to Tuesday S' 4-28     meds and nightmares
Hope M's 4-30 reply to Ellen's 4-26     maybe he has panic attacks & more
Karen D's 4-30 reply to Karen S' 4-28     get another opinion - please

Dega's April 2 reply to Peggy's March 31, 2001 - Hi, My husband has the same problem and we thought it was due to his meds until the diarrhea went out of control so he went in and had a blood check and found out that he has diabetes. One of the symptoms is diarrhea and the doctor said the reason he became extremely weak and dizzy after having a bout with it is because your blood pressure drops dramatically.

Judy H's April 3 reply to Peggy's March 31, 2001 - Hi Peggy, My husband Bob has DCM with an EF of about 15 - 20%. He has been having the same problem with diarrhea. It comes and goes in cycles. He's on similar medication: 12.5mg Coreg BID, 0.125mg Digitek (Lanoxin) daily, 20mg Prinivil BID, and Pravachol. He also takes 40mg furosemide if he needs it. He also takes Ranitidine and Ecotrin daily plus he has an ICD.
     He has had a bad time with diarrhea lately and today his blood pressure, which is usually 91 over 59 range dropped to about 71 over 49. He's waiting to hear from the cardiologist now. I'm hoping that between the heart doctor and the PCP we can get something resolved. He feels like he's going downhill and I'm feeling scared too. I'll keep you posted. I would like to hear from anyone else who has had to deal with this.
     I also am wondering about SOB. He gets these episodes, also cyclical. He can walk around the mall a couple of times without getting short of breath, and says that walking actually helps him. Any thoughts? Judy H.

Jon's April 3 reply to Todd's March 29, 2001 - Hi Todd, Has your dad had heart surgery in the past few years? Jon.

Beth C, April 5, 2001 - Hi, We have good news to share. Thanks to Jon's suggestion as well as others, we arranged for a second opinion and consultation with a CHF specialist at a teaching hospital about an hour from our home. I obtained the name of this doctor from this site, Jon. The visit confirmed that my husband is recovering well from the cardiomyopathy he was diagnosed with in December. The recovery began when the rate on his pacemaker was turned back to 60 bpm from 70 bpm. Well, the cause and reason for improvement are beyond the scope of this post but I can testify that there are success stories and even miracles. We are fortunate that the prognosis is excellent. While we were at this site, my husband had the Vo2max stress test and he performed very well on that, so he's clear to exercise all he wants. Medication will continue but as his blood pressure is on the high side anyway, that is okay. God bless you all.

Carolyn, April 6, 2001 - Hi, Maybe because spring has finally arrived so has good news. My husband had a new echo done and his previous EF of 31% is now 61%. We heard this from his PCP. We will see the CHF specialist in a few weeks. I hope this good news just keeps coming. It may be contagious and I hope all of you out there catch it.

Leslie Morris, April 6, 2001 - Hi, My husband, who has had cardiomypathy for 3 1/2 years, has been in a-fib for at least a month now. His cardiologist wants to wait for a couple weeks to do the electrical treatment. His reasoning is that the longer it goes on the better the chances are the treatment will remain effective. His internist wants to do it right away becuase he is afraid if goes on longer it increases risk of stroke even if he is taking Coumadin. Does anyone know who may right here?

Jon's April 6 reply to Leslie Morris' April 6, 2001 - Hi Leslie, I am not a doctor and a-fib is not my line of research. With that said, if it were me, I would get it done as soon as possible. My reading indicates this to be the best course for the patient. Jon.

Todd's April 6 reply to Jon's April 3, 2001 - Hi Jon, My dad has not had any type of heart surgery. He is 73 and we have been told that they could not risk it. We have hospice working with his doctors to come up with ways to help him sleep better but with no luck so far. He is really coughing a lot now and has to clear his throat a lot as well. If we could just get him to sleep through the night and work on his problem with confusion, things would be much better. Maybe it is too much to ask at this point. Thank you Jon, for all of the help and information you have provided to us. Todd.

Jon's April 6 reply to Todd's April 6, 2001 - Hi Todd, I asked because such symptoms can come from the time spent on a heart-bypass machine during open-heart surgery.
     There is a substantial subset of heart failure patients who suffer from insomnia - I am one of them. In fact, this is my most crippling problem. Unfortunately, no long-term solution seems to exist. For your dad, perhaps a shorter-term solution would work just to get him rested up. Several sleep aids are suitable for short-term use (a few weeks) including Sonata, Ambien and Restoril. Ask the docs about them, and be forceful. Loss of sleep can make every other symptom 3 times as bad as they would be on a good night's rest!
     The confusion and emotional turmoil may be related in part to many causes: drug side effect, uncertainty about the future causing great stress, lack of sleep weakening bodily systems and the mind, lack of oxygen to the organs due to weak pumping of the heart, and so on. Perhaps getting him a sleep aid, considering an antidepressant, and maybe a heavier schedule of intermittent infusion of inotropes would help.
     The cough could be from the Cozaar or it could be from CHF. If it is caused by CHF, perhaps stronger diuresis would help, maybe switching to Bumex or further reducing afterload with a beta-blocker to ease the load on his heart. Morphine is also a very effective venodilator and is often used in severe CHF. It would also ease his stress at the same time. Again, talk to the docs about this. Maybe even a stronger dose of Lanoxin might help his heart beat more strongly on a daily basis.
     I'm not a doctor so these are sort of shots in the dark, but at least maybe they will give you points to ponder and research for your next talk with his doctors. Wishing you and your dad the best, Jon.

Bill D's April 7 reply to Todd's April 6, 2001 - Hi Todd, I have been taking 30mg Restoril for many years. On top of that, I take two tablets of Tylenol PM (benadryl plus acetaminophen) to get to sleep. The Restoril is useful in keeping you asleep. I am 70 years old and I don't worry about being addicted - that's the last worry in my mind. If the coughing wakes him up I would ask the doctors to try a different ACE inhibitor or ARB. Good luck with your father, Bill D.

Peggy's April 7 reply to Leslie Morris' April 6, 2001 - Hi, My husband was diagnosed in November with DCM, CHF and A-fib. It was very important to get his cardioversion done as soon as possible because we were told his chances of sudden death were very high and also of having a stroke! They had to wait 2 weeks before they could do it because they had to put him on Coumadin so he would not throw a blood clot during the cardioversion. I would not wait! This is something you do not fool around with. We were told this is very life threatening and that after his cardioversion was done, the a-fib can re-appear at any given time. So far he has not been back in a-fib, though. Good luck and God bless.

Lee R's April 7 reply to Leslie Morris' April 6, 2001 - Hi Leslie, Regarding your husband's a-fib, I can only tell you my experience. I do tend to go into a-fib and have other arrhythmia problems (I have an ICD implanted) but my physician has always hospitalized me right away. They did not use electrical conversion for me because sometimes the shock from my own ICD puts me out of VT but into a-fib. Some fun! Even when that happens and not too often anymore, I end up in the hospital via ambulance to correct my a-fib. One thing more, try to make sure his electrolytes (esp. potassium and magnesium) are followed closely. I hope this helps. Good luck to you guys, Lee.

Nadine, April 9, 2001 - Hi, This is just to let you know that my husband had his Vo2max test done last week. The doctor explained that my husband did 90% of what he should have done had his heart been healthy. She thought this was great and we were very encouraged.
     However, just the week before we had to go to the ER for his SOB and chest pain. He gets dizzy and very weak on any kind of emotional upheaval. So now we are being told his heart function is "normal" with an echo-tested EF of 54% but we still deal with recurrent episodes which I find scary and upsetting because we never get any answer in the emergency room as to what is going on. They simply wait until he's stable and last time gave him a diuretic, and send him home. It didn't even seem like anyone was monitoring the leads on his monitor. No one is explaining stuff in the emergency room. The monitor kept beeping and a number appeared beside something labeled PVC and the numbers would go up to 6 or so and then clear and then start over. Is this something we should know about? I want to be happy and believe Niels is okay but is he?

Jon's April 9 reply to Nadine's April 9, 2001 - Hi Nadine, I don't know if he is okay or not obviously, but here are a few suggestions and tips. PVCs can drive you nuts but are not considered life threatening. The ER staff really aren't there to give explanations. You need to have a sit-down talk with Niels' doctor - who is hopefully a CHF specialist - and take a list of written questions to discuss with him. That's where the answers should come from.
     Also, keep in mind that EF is not an indicator that everything is okay or not. Heart failure involves many bodily systems besides the heart, a fact that is only now starting to be realized by doctors. Very few non-CHF specialists have a clue about the true complexity of CHF and how it can disable people who have reasonably high EFs by improper activation of hormonal systems, endothelial dysfunction, muscular myopathy, inefficient energy manufacture, and more. Sit down with a CHF doc and talk it over. I am sure your questions will be answered - just make them as specific as possible. Jon.

Todd, April 9, 2001 - Hello Jon and Bill, Thank you for your responses. I will take this to his cardiologist right away and will keep you posted. Thank you again! Todd.

Ben B's April 9 reply to Jon's April 9, 2001 - Hi, Perhaps what I am going to say is a bit cardiologically incorrect but here goes. I understand that EF is not the be-all and end-all of how a person is doing. I just wonder if a person is improved in virtually every measurement: EF, Vo2max, heart size, etc,..., and they feel worse then these tests must be sort of worthless or perhaps their problem lies somewhere besides their heart. If a person went into a doctor's office with a basically normal rhythm, normal EF, normal heart size, and near normal VO2, how in the world would anybody diagnose them with CHF?

Jon's April 9 reply to Ben B's April 9, 2001 - Hi Ben, I am assuming this is theoretical. If a person has no abnormal heart test results, - including a BNP test - he probably does not have CHF so I assume he would not be diagnosed with it. ;-) Jon.

Linda Grant, April 10, 2001 - Hi, What antihistamines and decongestants are safe to take with heart drugs such as Inderal and Altace? I hope this finds you feeling well. Wishing you and your family the best of health.

Jon's April 10 reply to Linda Grant's April 10, 2001 - Hi Linda, The only way to be sure what is safe for you is to ask your cardiologist, then double-check that info with the pharmacist. Period. With that said, as far as I know, the only truly safe antihistamine is benadryl - with no "added" stuff. There are no "universally" safe decongestants. Jon.

Kathryn, April 10, 2001 - Hi, My son had a sudden onset episode of fluid buildup and SOB with gurgling in his chest. He was taken off spironolactone (Aldactone) about a month ago because of discomfort with breast tenderness. He had been feeling quite well and around Christmas time was checked for a dehydration episode that took us to the ER, where x-rays and an exam determined that his heart size has returned to normal. An echo in January showed that his EF had returned to 40% from 18% last year.
     To make a long story longer <g> he had stayed out late with his buddies for 2 nights running and overdid it. That's my opinion only - he is 27. Is he paying for it on the third day with CHF symptoms? Or could it be fluid building up suddenly after being removed from sprinolactone? We got in to see his PCP Friday and they did blood work for dig levels and electrolytes. No word back from the lab yet. He has an appointment with his cardiologist on the 17th. This episode happened last Thursday night and was preceeded by violent shaking - like chills but no fever - then coughing and wheezing and SOB. It was very scary. We sat up all night and administered 20mg of extra Lasix twice in a 4 hour time frame. He did not urinate too much, though.
     This week the PCP told us to double the usual dose of Lasix, which we did. My son is now constantly in the bathroom. Why do diuretics work sometimes so well and sometimes not so well? Also, there does not seem to be any correlation between the sodium load and how the diuretic is working. Could there be a problem with kidney function that is not being addressed? Also, he never had fluid buildup in his legs, it is always in his abdomen.

Jon's April 10 reply to Kathryn's April 10, 2001 - Hi Kathryn, See the edema page for more on that. Oral diuretics will not work well if the abdomen retains fluid. These drugs are absorbed through the lining of the stomach, which in this case is partially blocked with all that extra fluid. That's why a dose of IV Lasix will work where a Lasix pill will not. This is also why it is a must to weigh oneself each and every morning in your skin only. If you gain 2 pounds in 24 hours (some say 3 pounds in 36 hours), you should take an extra Lasix then instead of waiting until you swell up and can't breathe because you are retaining fluid. This should obviously be discussed with your doctor but it is standard procedure.
     The "fatigue hangover" usually does strike on the third day after overdoing it. Most CHFers take 25mg of spironolactone (Aldactone) daily. This is not enough to have any diuretic effect. It has other actions which decrease mortality though. So stopping that drug should have little or no effect on fluid retention if it was taken at that dose. Jon.

Cathy Cobb, April 10, 2001 - Hi, I am trying to find a way to purchase an oxi-pulse machine for my mother. I just want the little one that does not produce a tape. Where could I order one from? Thanks for any info.

Sharon B, April 10, 2001 - Hello to all, My husband has CHF that we have been dealing with since January 17, 2001. He is doing well with no visible problems. We went to the VA today for an appointment in the surgery department. The discussion was about going in and clearing out his neck. He has plaque buildup about 75% in one side and 60% in the other. We must see the cardiologist May 2. We just saw a nurse but she did explain things to us and she is the first one to say anything looks good so I was pretty happy. At this point any encouragment is welcome.
     Jon, I was wondering if there is an update on Myovive. They said around April. I hope all is well with everyone's loved ones.
Jon's note: See this post

Kim T, April 10, 2001 - Hi, My husband was diagnosed with CHF in February. The doctor tells us now that he is not in heart failure but he does have cardiomyopathy, and they don't know what caused it. His EF was 13% on his last stress test. He seems to be feeling much better than he did before he was hospitalized, but he is now experiencing a lot of pain from arthritis. He is 43 and has ankylosing spondylitis. The doctor at the Cleveland Clinic wants him to start an ACE inhibitor along with his Coreg. His rheumatologist just told him that he can't take any kind of anti-inflammatories once he starts the ACE inhibitor. Has anyone out there experienced this? I don't know how he will get around if he doesn't have some kind of anti-inflammatory med. This is a great site and we've learned a ton by reading here. We appreciate any advice you might have!

Lillian, April 10, 2001 - Hi, I just wanted to give an update on my dad. He is in the hospital now. He has a blood clot in his lung. They are trying to dissolve it. They also said he must stay on oxygen all the time now. He was very lucky with the clot. It was in his leg and got loose and then stopped in his lung. That's all for now. Thanks.

Trish, April 11, 2001 - Hello, This is my first time writing. My father was recently diagnosed with CHF. His EF is about 30%. He recently went in for a T-wave alternans test. It measures the electric output of your heart. While on the treadmill he couldn't catch his breath so they stopped the test and now have him on a holter monitor for a couple of days. He is 70 years of age and has always been very active. His heart rate can be very erratic throughout the day. He usually feels pretty good in the morning then progressively tires in the course of the day. He is currently taking Zestril, Lasix, spironolactone (Aldactone), baycol and lopressor. He is new to these meds and the doctors say it will take about a month for his body to adjust. Could these meds be making him more tired then normal? Do you know anything of a sudden racing heart? Any info you have will be of help. Thanks for the resourceful web site, Trish.

Dawn, April 12, 2001 - Hi everyone, I just found this site. It's great! I just put my 95-year-old grandma in a nursing home a month ago. She had pneumonia a year ago, and again a couple of weeks ago. She has had CHF at least since her first bout with pneumonia. I had a long talk with the nurse at the nursing home and it seems that Gram's condition has gotten worse since the last pneumonia bout. She is 95 and doesn't want any surgery or a pacemaker or anything. She's on oxygen, and her legs and feet are very swollen. Her blood pressure medicine was just cut in half yesterday.
     I'm an only child and only grandchild, so this is a lot for one person. I just feel like I'm powerless and biding time. Dawn.

Connie M, April 13, 2001 - Hello everyone, This post is for my husband, Jack. We don't post often but read at least every other day. He is in the transplant center in San Antonio with a continual Primacor drip awaiting a new heart. It seems we go one step forward and 2 steps back. He was looking forward to coming home for Easter. He has been there for 4 weeks but has a wonderful attitude. I just wanted to ask for prayers that he gets a heart soon. I also have a friend whose 7 month old child is awaiting a liver transplant; his name is Jason. Please remember both of them and I hope this special time of year finds all of you well. Thanks, Connie.

Natalia, April 16, 2001 - Hi, I live in Toronto. We invited my mother to visit us in August of last year. She became sick and developed CHF. Because she doesn't have anybody in the world to take care of her, my family applied for her to stay permanently in Canada. Her papers are still far from the final decision and we are visiting our family MD regularly and are paying for meds and doctors' visits by cash. I was trying to buy an insurance for her but the answer was that pre-existing conditions would not be covered anyway.
     She retains a lot of fluid lately. Every day I live in fear that I might have to rush her to the hospital. Does anyone know any hospital in my area that has lower cost for treatment or any discounts for people like my mom? I know that there are many people out there who need similar help or might know how to deal with such a problem and survive. I am begging for help! Thank you all.

Autumn's April 16 reply to Ben B's April 9, 2001 - Hi Ben and all, I really believe as Jon said in another post, that CHF is a very complex disease involving many bodily systems. For myself, I am no longer in CHF and I certainly feel better than I did then. I can breathe much better, I can speak more than 3 words without having to gasp for breath, I can laugh without gasping for breath, and I no longer need to sleep on 4 pillows. However, my energy level is still very poor and I must let a lot of things slide. I really have to pick and choose where I will spend my energy. If I overdo it, I am shot for several days and my heart really acts up. I quickly feel like I am heading towards CHF again. Even though I'm not in CHF at this time, I require more sleep than I've ever needed in my life, yet find it harder to get good sleep. My doctors attribute my fatigue level to regurgitation from 3 valves and mild PH. I also think it has to do with my mild renal (kidney) insufficiency, lack of good sleep, and chronic pain. So even though I would no longer be diagnosed with CHF at this time, my body is still far from peak.

Susan B, Autumn 17, 2001 - Hi, Thank you for your messages from the heart. In January of 2001, we were told that he was in a-fib and all we had to do was take the drugs and wait 4 weeks and they would shock him back into sync. The doctor also said his heart was weakened but we really did not understand.
     After 4 weeks, they shocked him back into sync and they told us that his heart would get better because it was back in sync. They also told us the his EF was 15 to 20% but they gave us no other info. Then on March 1, 2001, the nurse told us "you know that he is in CHF, don't you." We still did not understand and I asked if he could get better. She explained that if the drugs just stopped him from getting worse, that would be great. She told us to have him weigh himself and signs to watch for. She did not warn us about what happened.
     After a few weeks, his fingernails and lips were blue. I called a friend, who is an NP. She ordered me to call for the doctor and get him help. The doctor had us make an appointment for the next day and my husband went by himself because I had clients to see. My husband came home and said that he might need oxygen treatment and that the doctor's office would be calling me. I did not hear from the doctor's office that day and waited until the next morning because I did not know or understand that my husband needed more help then.
     When I talked to the doctor the next day, because the nurse would not give me any information, I found out that George's (my husband) O2 level was dropping to 81% when he was moving and was 97% at rest. The doctor told me that his office was working on getting O2 and that the office would call us back. Several hours later, I called the doctor again and asked where the O2 was. He told me that the insurance company had not approved it yet and as an attorney I should work on changing the laws. Because it was after 7:30 PM and I am still learning the ropes, I did not do anything else until the next morning.
     I called my husband's fire station (he is a firefighter) and they helped get O2 to the house in under an hour. Please take this as a warning. We did not understand and no one seemed to want to talk to us in plain English. I have promised myself that this will never happen to us again. I hope it doesn't happen to anyone else either. I am learning all I can about CHF and making my husband's health number one. Other attorneys are helping me with my practice, which I am likely to close this year because I can no longer work 6 days a week and I want to take care of my husband. Moreover, I have not been able to find another attorney to fill in on a regular basis. Additionally, I am crying most of the time, which does not endear me to judges.
     George has been off the O2 for 3 weeks now. He feels better than before. He is working light duty at the fire department until we know how the drugs are working. I am still feeling lost and afraid.

Mary Lou's April 18 reply to Susan B's April 17, 2001 - Hello Susan, As the CHFer in my family, I can't actually put myself in your shoes. I just know that I felt lost and afraid when I was diagnosed with CHF so we do, at least, have that in common.
     In my opinion, it is waaay past time to find another doctor for George, preferably a CHF specialist, and fast. You didn't say what city or state you are in but you should look on Jon's Find a Heart Failure Specialist list to see if there is one near you. There is absolutely no excuse for a doctor, or anyone on his staff for that matter, to let a patient leave the office without making certain that he has a full understanding of his condition and the treatment plan. They should write it down for him if necessary. My neuro doc does it for me. When a doctor says he will call you at home, he should do it that same day. I don't understand why he didn't see George the same day you called for an appointment either. We're not talking about a stubbed toe here.
     Thank goodness your husband is a firefighter and the guys down at the station had more concern (I almost wrote sense) than the doctor. They realized there was cause for concern and acted responsibly. Great going, guys! Susan, I will keep all of you in my prayers. I'm sorry for venting but George's doctor makes me angry. Mary Lou.

Emily, April 18, 2001 - Hi, My mom has CHF. She is 69 years old. I am taking her to her cardiologist today because she is increasingly exhausted and even the thought of taking a shower is exhausting to her. Her her cough is worsening as well. She coughs terribly whenever she is eating. My mom worries that this is end-stage CHF. I printed the Ace Inhibitor page and the bad cough page to bring with me to the doctor's office. Thanks for providing this information. It gives me a starting point for today's visit.

Emily, April 20, 2001 - Hi all, I just wanted to update you on my mom's visit to her doctor's office. Her bad cough was due to her ACE inhibitor and the doc changed her med to Cozaar. A million thanks to your site. He assured her that she was not in end-stage CHF and gave her hope for an improved state of health. Thanks again.

Cindy, April 24, 2001 - Hi, My Grandma has CHF and was hospitalized a couple of years ago and never regained her strength back. I tried to care for her at home but because I live in Tennessee and all the rest of our family is in Indiana I couldn't do it alone so we had to admit her to a nursing home. She has a living will and a DNR (do not rescusitate order) and actually gave up a long time ago. Grandma has always had a good mind though, and loves to go places.
     Last year she got sick and on the way to the hospital they rescusitated her and her doctor somehow talked her into a pacemaker, which made her very angry when she found out what it was. Anyway, I went to visit her this weekend and she was fine when I first got there except I could tell that she had lost a lot of weight in the past 6 weeks. She was very congested and coughing until she was practically gagging, not a dry cough either. I could tell the congestion was back. Anyway, she wanted to get out for the day so we did and by that afternoon she was very confused and saying very strange things.
     My uncle said it was lack of oxygen to her brain and that this had been going on about 6 weeks. She is 92 years old and the only real mother I have ever had, but I think I should probably be preparing myself to let go, especially since she refuses any type medical help. Do you think she is in her last stages also? Someone please tell me something.

Grady, April 25, 2001 - Hello all, My father had a motorcycle accident 2 days ago. He broke his clavical and had a collapsed lung. They put a chest tube in for the lung and have him on morphine for the pain. He has been getting a lot better the past 2 days and they had talked about taking the chest tube out tomorrow. However, they took a portable x-ray of his chest and decided that he didn't have enough oxygen in his blood so they started him on oxygen. Heres the scary part: They think he might have some fluid in his lung. If he does, the doctor said that's called congestive heart failure. Can they do anything if he has fluid in his lung? What are the percentages? Thanks guys, Grady.

Kathryn's April 25 reply to Cindy's April 24, 2001 - Hi Cindy, I am so sorry to hear about your Grandma. I know how much you must be worried and concerned. I can't tell you if your Grandma is in end-stage CHF. She sounds very much like my aunt, who raised me and was my surrogate mother, to whom I was very close. She also had very specific wishes and was strong minded. I was with her when she passed away a few years ago not from CHF but cancer. It is not easy to ever lose our loved ones but I think it is very important to remember and honor your Grandma's wishes - the DNR and all - and it sounds like you are truly being supportive to her in all ways. You are lucky to have her and she is lucky to have your love and support. Your note was a good reminder of the love we share with our families and how important it is to keep our promises and to be there for each other. I will keep you and your Grandma in my thoughts and prayers.

Ellen, April 26, 2001 - Hi, My husband has had CHF and cardiomypathy for a little over 3 years now. He started having episodes where his stomach would start hurting and then he would start sweating with nausea and a gagging cough, like he needed to vomit. We thought he might have a stomach problem so in October of 2000 he had tests done, which showed nothing wrong with his stomach.
     He has these episodes when he either gets angry about something or when he is scared. It will last about 10-15 minutes and then he will be really weak for awhile. It is really scary because he cannot catch his breath when this happens. We have asked the cardiologists about this but they don't seem to have a clue. My husband says when he feels one of these episodes coming on, he can feel like acid going into his stomach.
     It has been happening more frequently and today it happened while we were on the road, and he was driving. I am glad I was with him and he managed to pull over so I could drive. I sure don't want him driving alone anymore until we find out what is causing this, and if there is a remedy. I was wondering if anyone can relate to this or might have an idea what may be causing this. I am also wondering if it could be heart-related. Thanks, I sure would appreciate any input.

Donna, April 27, 2001 - Hi, I have never posted to this site before but have found it very useful and informational. My mom is a young 76 years old and has been diagnosed with CHF with an ejection fraction of 20%. She is on 12.5mg spironolactone (Aldactone), 80mg Lasix, 5mg Coumadin, and 25mg captopril 3 times a day. She cannot take Coreg due to side effects. Her doctor(s) are talking about an experimental program for a biventricular pacemaker.
     She experiences major fatigue and shortness of breath. I cannot find a CHF expert for her on this site. She lives in Providence, Rhode Island. She is currently seeing a group of cardiologists and we recently met with a heart failure clinic. She has been rushed to the hospital twice in the last month. This most recent time last week she was in for 5 days. Any advice or information about this pacemaker or anything else we can do for her would be greatly appreciated. Thank you, Donna.

Karen S, April 28, 2001 - Hi, My dad suffered a massive stroke 2 years ago. He was not expected to make it but he did and did well. He has been healthy and thriving but about a month ago he started having trouble breathing. His doctor gave him a nebulizer to use 3 times a day and a couple of weeks later we have seen little to no improvement in his breathing. I can leave indentations in his legs and his affected arm. My mother does not want to rock the boat with his doctor, who is a great guy. I'm ready to look for a second doctor. Any advice or related experiences would be appreciated. Karen.

Tuesday S, April 28, 2001 - Hi, My 12 year old son is on Coreg for CHF. His cardiomyopathy is a result of chemotherapy when he was 5. He has been suffering terrible nightmares. The content is certainly revealing - evil doctors trying to cut out his heart, death - but I believe the intensity (he's afraid to go to sleep) is related to his use of beta-blockers.
     Does anyone know how this is dealt with? His EF is 7% so taking him off of any of the drugs that work is not an option. Of course I'll talk with his docs but not until next week, and sometimes having several ideas is a better starting point than just asking the doc. None of us is getting any sleep with him roaming the house, and eating potato chips, for all I know!, at 4 in the morning! Help! Tuesday.

Carolyn S' April 28 reply to Karen S' April 28, 2001 - Hi, It sounds like your father might be retaining water. Has he had a significant weight gain (2 or 3 lbs) in a single day? If so, please check with your doctor, he may need a diuretic. I hope this helps. Good luck to you and your family.

Bill D's April 28 reply to Karen S' April 28, 2001 - Hi Karen, Your father needs to go to a cardiologist who specialises in Congestive Heart Failure. You can't get him there soon enough! He needs everything: diet and medications. About that nebulizer, I think his doctor is a great quack! Bill D.

Hope M's April 30 reply to Tuesday S' April 28, 2001 - Hi, I belong to a Mended Hearts group and at one meeting we had a speaker who was a sleep specialist. I mentioned that when I was taking Coreg, I had nightmares but my dreams are not as dramatic when I take a different beta-blocker, Toprol (a time-release form of metoprolol). He said that SSRIs (antidepressants) can be effective in reducing the nightmares. However, the thought of adding another drug just to combat a side-effect from a drug is pretty daunting. I'm doing well taking metoprolol and not taking Coreg.

Hope M's April 30 reply to Ellen's April 26, 2001 - Hi, This may sound far-fetched but could it be that your husband is having panic attacks? A rather simple way to see if this is the case is for him to ask his doctor for a prescription for ativan. If your husband has another episode, he can put an ativan under his tongue and within 5 to 15 minutes he should be feeling quite a bit better. Get brand name - generic doesn't work the same way.

Karen D's April 30 reply to Karen S' April 28, 2001 - Dear Karen, Please do as Bill Drummond suggested and get your dad to another doctor - preferably a cardiologist who specializes in CHF. My husband (another Bill D) was treated with steroids and antibiotics by 3 different doctors for breathing problems and it took 6 months before he was properly diagnosed with CHF. By that time he was in really bad shape! The shortness of breath was coming from fluid build-up around his heart. The fact that you can leave an indentation in your dad's skin is another indicator of fluid build-up. Please let us know how your dad is doing. Karen D.

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