The paperwork never ends The Archives
Loved Ones - March, 2003 Archive Index CHFpatients.com

Rosemarie 3-3     humming and numbness in feet? & more
 
Carla 3-3     glucophage questions and more
 
Karen S' 3-5 reply to Donna H's 2-27     pacemakers and more
 
Mark 3-10     seek CHF specialist in Pensacola area
 
Judy H 3-11     update on Bob
 
Arlene 3-16     I am very frustrated
 
Lynn 3-16     does anyone else get angry? & more
 
Susan 3-16     I really need some replies
 
Lorraine's 3-17 reply to Susan's 3-16     possibilities
 
Susan B's 3-17 reply to Lynn's 3-16     coping with chronic illness
 
Donna H's 3-17 reply to Lynn's 3-16     coping with chronic illness
 
Catherine L's 3-18 reply to Rosemarie's 3-3     another possibility
 
Davida's 3-19 reply to Arlene's 3-16     hang in there
 
Anita S 3-22     seek EPS experiences
 
Anita S 3-22     seek ICD/Medicare information
 
Jon's 3-22 reply to Anita S' 3-22     ICD/Medicare information
 
Joyce C's 3-24 reply to Anita's 3-22     ICD/Medicare experience
 
Anita S' 3-24 reply to Jon's 3-22     thank you all
 
Mary M 3-31     questions about my mom's treatment
 
Jon's 3-31 reply to Mary M's 3-31     treatment guidelines
 
Dorothy 3-31     questions about my dad
 
Sandy 3-31     should I get involved in this?
 
Sandy's 3-31 reply to Dorothy's 3-31     we were told different things
 


Rosemarie, March 3, 2003 - Hi, Frank has suffered for some time with his feet. He describes it as "humming" and sometimes feeling quite numb. Now he is saying that the tips of his fingers feel numb too. Can anyone tell me what that means? Is it to be expected or whatever, please? bullockf@iafrica.com


Carla, March 3, 2003 - Hi again, I am in distress. My husband is scheduled to have a pacemaker and an ICD implanted this Tuesday. His doctor ordered Coumadin stopped last week but said that it was okay to continue Glucophage/metformin. Everything I read about this drug tells me that my husband should not be taking it. He has had symptoms of lactic acidosis and was hospitalized briefly 2 weeks ago for these symptoms but no one ever brought this up. Why are cardiologists allowing my husband to take this drug with the known risk it has to patients in heart failure? hipmom1andonly@aol.com
 
Jon's note: get a second opinion and soon


Karen S' March 5 reply to Donna H's February 27, 2003 - Dear Donna, I'm really glad to hear that your husband has improved. We are in the process of finding out if my husband can get an ICD/pacemaker. My neighbor also has CHF and her condition improved greatly after getting her pacemaker. I hope things continue to go well for you and your husband, Karen. gstilley@hotmail.com


Mark, March 10, 2003 - Hi, My 88 year old father has CHF. He is under the care of a cardiologist, whose bedside manner is rather abrupt and he also is hard to get hold of to answer questions. We would like another cardiologist in the Pensacola area to take a look at him. We need recommendations on cardiologists in Pensacola, please. Thanks, Mark. yellogrits@aol.com


Judy H, March 11, 2003 - Hi everyone, My husband Bob, was released from the hospital after 15 days. He's got DCM, 15% EF, an ICD, and is 5 years into this heart failure world. I thought I was tough, but this latest episode really tested my soul and it was very hard and demoralizing for Bob this time.
     If any of your loved ones are taking Aldactone please, please make sure they get blood tests regularly to check potassium level. With high potassium, a person can get critically ill really quick without even feeling sick. Once the potassium is under control all kinds of things can still happen, as happened in Bob's case. He kept everyone in telemetry running with his episodes of arrhythmias and he even scared me when he passed out while getting 4 pacing shocks from his ICD.
     He now is on 400mg amiodarone (Cordarone) a day, which scares me too. It seems he is also vitamin D deficient and also has to supplement his calcium. The good is that his kidney functions are normal. Now, he has an appetite again and is actually up to 137 pounds, which helps him feel a little bit stronger. He even has had some blood pressures in the 90s and even over 100! Yes, I'm always looking for the good in things in the middle of all the bad.
     There are other stresses going on right now such as job uncertainty, huge cuts to Bob's pension, which was taken over by the government (PBGC), and then there's the water damage/carpenter ant problem in 2 of our bathrooms, which basically had to be gutted! However, for now, we'll take it day by day. Life is a beautiful gift! Thanks for letting me vent, Judy H. jmh@bright.com


Arlene, March 16, 2003 - Hi, I am new to this board. I am at the Mayo Clinic with my husband, who is in the hospital right now after getting a biventricular pacemaker. He got it on the 12th and now on the 14th they hear fluid in his chest again. They drew 1-1/2 liters out on Monday. Right now all seems hopeless because this has been going on for so long and we finally ended up here.
     I am exhausted and depressed, and don't know where to go or do next. I guess needing someone to talk to about this is important - someone who is going through the same thing. Before we came to Mayo, he was on Coreg and Altace. They were lowering his Coreg because he couldn't breathe. Well, here they are raising it again and raising the Altace. I live in New Jersey and my husband is 74 years old. His EF runs between 20 and 32%, depending on what test is being used. Last June he was well and had a test taken that showed he had an EF of 32%, no symptoms, nothing.
     They catheterized him and found he was blocked, and told him he was a walking time bomb and did a quadruple bypass. Up till then he seemed healthy and had no clue that his EF was 32 because there were no symptoms. After the bypass all these things happened: pneumonia, pleural effusions, etc. It's too late now but he should never have had the bypass done. He is also on large doses of CoQ10. Arlene. Avantee@aol.com


Lynn, March 16, 2003 - Hi, This is my first post ever online. My husband is 59 years old and in CHF. It has been one year ago this month that he had repeat bypass surgery at Emory University in Atlanta. At age 40 he had 5 bypasses done. He arrested in recovery, was shocked, chest opened and returned to surgery. After 4 weeks in the hospital we returned home. Following a slow recovery, he amazed everyone by returning to a very active life. His construction company was very well respected in our state and region.
     Now 18 years later he is disabled to a great degree and quite depressed. Boy, this is getting long. His edema is in his abdomen. He is always cold, has almost constant gout, extreme fatigue and now nausea. He cannot tolerate any beta-blocker. He takes 10mg Demadex BID, 2.5mg Zaroxolyn once a day, folic acid, and Altace. All his cardiologist offers is transplant.
     By the way, due to many factors, we have lost most of our savings, including 401ks, trust funds, and 99% of our employees. All of you wives sound so compassionate. I admit to feeling angry at this situation. Yes, we have had a good life but to be this sick at 59 is hard to deal with. There are days when he puts in 8 hours in the office, while others are spent in bed. This gout is a serious problem although we have the meds, diet, etc. Does anyone else deal with this? I'm sorry to sound like a crybaby, maybe it's the rain. Lynn. eholseberg@aol.com


Susan, March 16, 2003 - Hi, My grandfather is 86. He was hospitalized 6 times between the end of January and the end of February 2003. He has a pacemaker since he had a third degree heart block in 1999. I don't think it's an ICD, just a regular pacemaker. He had an cath on February 14 that showed an EF of 45% and a cardiac output of 6.2 liters. The report said the problem with his LV was "mild." From what I've read, this is not a very bad report yet my dad feels extreme weakness.
     He says he feels as if his legs are going to collapse under him and he walks very little, perhaps 3 minutes at a time, 2 to 3 times a day around his apartment. His BUN is 70 and his creatinine 2.4, down from 3.0 when he was taking Zaroxylen. He is on 20mg Demadex daily. Beta-blockers made him feel terrible so he is no longer taking those. ACE inhibitors give him too severe a cough. He is on Diovan and hydralazine. He has not gained weight since he was released from the hospital the last week in February. Is there more to CHF than what shows on a test result? Could the doctor who performed the cath have seen some kind of extreme weakening of his heart that is not documented? My dad's internist says his heart is not contracting enough, but I''m confused because of the test results.
     Does anyone have any idea if this extreme weakness is due to CHF or to some kind of anxiety or depression? My dad has shown signs of both of those since he was discharged from the hospital this last time. He is on a mild anti-anxiety agent called Buspirone HCL.
     I am also concerned with the sudden death that people with CHF can experience. Is there a certain kind of pacemaker that can keep that from happening or make it less likely?
     One other question: Does anyone know of a good CHF specialist in the Brooklyn New York area? My dad's general cardiologist is terrible about questions, hard to get a hold of, and has a very nasty attitude. Susan. joss16us@yahoo.com


Lorraine's March 17 reply to Susan's March 16, 2003 - Hi Susan, You said your dad had been in the hospital several times recently. At 86 years of age, his weakness could be because of inactivity during that time. As we grow older it doesn't take long to lose strength, especially in our legs, if we don't stay active. CHF does cause weakness and also having to take off so much fluid can make him weak. There are lots of good pages here that explain about CHF. Good luck in finding a doctor you can communicate with. You have lots of support here also. Lorraine. gandlsimpson@msn.com


Susan B's March 17 reply to Lynn's March 16, 2003 - Hello Lynn, You are not a crybaby. We all need a safe place to vent. I vent here when I need to. You are at the right place. I know that I have felt angry helpless and depressed about this illness.
     My husband (47 years old) with CHF also has gout. His right foot is currently black and blue with gout but he is getting better. However, the gout has been interfering with his exercise program and our lives. So we went to the doctor just last week for relief. He has been having gout attacks every 2 weeks, even watching his diet. He is going back on allopurinol after he is better for 2 weeks. The doctor also gave him amoxil to take on the first day of a gout attack. Everything old is new again. This is an old drug and it works when taken on the first day of the attack. The doctor also agreed with my suggestion that my husband should swim on days that he is unable to walk due to the gout. Exercise makes everyone feel better.
     Being ill is expensive in this country. I am a bankruptcy attorney and over half my clients are bankrupt because someone is ill. I have suggested a book that may help you work through your feelings: "How to Survive Your Spouse's Chonic Illness." The author has been though it all.
     You are not alone and some days I wish that we could wake up from this nightmare, but here we still are, fighting every day for the best quality of life we can. As always thanks, Jon. My prayers are with you all. Susan B. gbratcher@kc.rr.com


Donna H's March 17 reply to Lynn's March 16, 2003 - Hi Lynn, I understand your anger very well! I had a great deal of anger last summer and fall and finally realized it was due to feeling so helpless and depressed. As to your husband's problems, is his doctor a CHF specialist or a general cardiologist? It seems that CHF specialists take a little different approach. I am not familiar with the meds he is taking but if he is having edema, I hope that at least one of them is a diuretic. I was also surprised that I didn't see Coreg or Aldactone (spironolactone) listed.
     If you can, read up on those drugs here at Jon's site and then talk to his doctor about why he isn't on them. My husband was treated for CHF for over a year at a very good hospital but they didn't put him on Coreg. It took a different doctor in a different hospital and the Coreg has helped him tremedously. At first it seemed to make his CHF worse but after a few weeks he began feeling better.
     Sometimes I think I have been too aggressive in trying to find ways to make my husband feel better and think I should back off a little, but last week when he was at his PCP, he told her that he wanted an appointment set up for when we could both go because he was worried about forgetting something. His PCP told us that most likely by us taking a proactive view and working as a team on his health care, it had increased his chances of survival by 50%.
     Find out everything you can, make notes then sit down with his doctor and discuss the options. It isn't easy but it will help you deal with your feelings of helplessness and may make a big difference in his care. herdrich@grm.net


Catherine L's March 18 reply to Rosemarie's March 3, 2003 - Hi Rosemarie, I wonder if Frank is suffering from peripheral neuropathy. My neighbor's husband has it in his feet and calves and your husband's symptoms souund like that's what it could be. You should find a good neurologist so you can get this diagnosed. Unfortunately, it is incurable and can progress, but I believe there are some drug treatments for it that can help. I also think there are support groups for it on the Internet. Good luck, Catherine. Gardengirl47@kc.rr.com


Davida's March 19 reply to Arlene's March 16, 2003 - Hi Arlene, I'm sorry you are experiencing such stress. The bypass surgery was needed. Don't have any regrets. My mother was told she was a walking time bomb also. She had a rough recovery because little did we know that she had developed lung cancer. We, at one point before we knew it was cancer, regretted convincing her to have surgery, but we had to be honest that the surgery was indeed critical.
     Coreg is a finicky drug - it works with some, with others it doesn't. Pray and keep your faith. The doctors just have to find the right balance for your husband. Lying in a hospital bed does nothing to help CHF patients either. When he feels like it and with the doctor's approval, he should sit up in a chair. I will pray for you both. Hang in there. cavalier_1@msn.com


Anita S, March 22, 2003 - Hi, I don't usually post but I always read the posts every day and keep my husband up on what is going on with all of you on both sides of the forum. My husband Phil is having episodes of dizziness and passing out. His cardiologist wants him to have an EP study done to see if he needs a pacemaker. Would some of you who have had this done, or your spouse has had this, please let us know how he will feel during this test and what might happen to him? We appreciate any information that you can give us. Take care. dreamersila@netscape.net


Anita S, March 22, 2003 - Hello, I have a question about what Medicare might pay for. My dad's cardiologist said that he needed a defibrillator but that Medicare won't pay for it. It will cost about $50,000 otherwise. Has anyone else heard of this? My dad is 77 years old so maybe this has something to do with it. Thanks for any information that you may have on this. Take care. dreamersila@netscape.net


Jon's March 22 reply to Anita S' March 22, 2003 - Hi Anita, Medicare should cover this as long as your dad's doctor lists the device implant as "medically necessary." The appropriate Medicare manuals may be found at www.cms.hhs.gov/manuals/cmstoc.asp? but I do not have time right now to do a thorough search. Doctors almost never know anything about health insurance coverage although they always think they do. <g> Let me know if you don't find what you need, Anita. Jon.


Joyce C's March 24 reply to Anita's March 22, 2003 - Hi Anita, My husband, age 69, had a defibrillator put in last month at Johns Hopkins'. They told us if they could prove to Medicare that it was necessary they would pay for it. I just got our statement yesterday and they did pay, and my medigap payed the balance. So far without doctor bills they paid $41,000. My husband did great and is feeling well. I hope all goes well for you. I think it all has to do with how the doctor presents it to Medicare. Joyce. joycec55@msn.com


Anita S' March 24 reply to Jon's March 22, 2003 - Hi Jon, Thank you very much for the information. I found exactly what I wanted on the site you gave me. I knew that I could count on you or someone on the forum to help me. I have also received 2 e-mails about the EP study. Everyone is always so helpful here. Thanks again. dreamersila@netscape.net
 
Jon's note: My wife found that site for you <g>


Mary M, March 31, 2003 - Hi, I am new to the web site and thrilled that it exists! I would love some input. My mother has CHF and diabetes. She has been in and out of the hospital for the past year. She was in the hospital last week with an EF of 15%, fluid in her lungs, and although the doctors never said kidney failure, they are extremely concerned about her kidneys.
     They gave her IV antibiotics and diuretics but she still did not lose any weight. What I'm curious about is why they sent her home. She is still retaining fluid and her EF is the same. They started her on Capoten and basically said that was all they could do. I'm very realistic about her illness and know that the focus is on quality, not quantity. Did they just want her in the comfort of her own home? Any comments would be appreciated. tmts1234@aol.com


Jon's March 31 reply to Mary M's March 31, 2003 - Hi Mary, You can read the official heart failure treatment guidelines in the CHF FAQ at www.chfpatients.com/faq/guidelines_99.htm. These apply regardless of age. Obviously, not everyone's treatment will be identical but whenever a CHFer's treatment is not according to the guidelines it is necessary to question the doctors involved about why not. I'd start asking. Jon.


Dorothy, March 31, 2003 - Hi, My name is Dorothy. My father has class 3 CHF, with an EF of 20%. The doctor told us he is not a candidate for a pacemaker. What exactly are pacemakers for? His cardiologist didn't even mention if he was a candidate for a heart transplant. Every artery in his heart was blocked, so he is not a candidate for bypass surgery. The doctor told us there was nothing that could be done, just maintain him with medicines and diet and exercise. Does any of this make sense? If not, I'm sorry, I'm new to this site and also to CHF. drodrigu@felpsis.net


Sandy, March 31, 2003 - Hi folks, It's been awhile since I posted but I read each and every day! My question to all of you is: How to you deal with a heart patient that refuses to take responsibility for his condition? One year ago, my 52 year old hubby had a cath which found 2 vessels at 90% blockage and one 100% blocked, He was in CHF. He had triple bypass.
     During the past year he has rapidly gotten worse about following his diet and exercise; since rehab, he has not done anything. Most recently he has declined to take responsibility for his appointments. He saw the nurses at the CHF clinic 6 months ago and they said they would contact him for an appointment in March. They have not contacted him and he has refused to contact them! It's the same thing with the cardiologist. My husband saw him 3 months ago and had an echo, and they were supposed to contact him with an appointment in 6 months. So far, the clinics have not contacted him, and he does not contact them for follow-up.
     I feel stretched from both ends here. If I step in and take over and call for these appointments, I will feel much better! On the other hand, this is not my responsibility, it is his. I am not his mother, I am his wife. Okay spouses, do I step in and take some control or do I sit back and wait for him to go into a CHF crisis and hope he learns from it? If anyone ever had their head in the sand about CHF, it's my hubby! In advance, thanks for any replies. Sandy. sandy4014@aol.com


Sandy's March 31 reply to Dorothy's March 31, 2003 - Hi Dorothy, Your message is in complete contradiction to what my hubby and I were told. When he had his cath, his EF was 15%. The plan had been to place stents if he needed them. When they found his arteries blocked at 90% they decided they could not place stents and bypass was his only option! I would question the messages you were given. Bypass is done because of blocked arteries, not because they are open.
     To everyone, e-mail me anytime. Please put "CHFpatients" in the subject line or I may delete it as spam. Sandy. sandy4014@aol.com


Susan B's April 1 reply to Sandy's March 31, 2003 - Dear Sandy, I hope this helps. I have some questions for you to ask yourself. What is your relationship like in other areas? Do you take charge and do the follow through? If the answer is yes, then your husband may be waiting for you to take charge. My husband is in denial about a lot of his illness, but he is very good at making doctor's appointments. He has always made my doctor appointments too. So I know if I had this illness, he would still have to make all the appointments. I just don't have the time/energy/mindset to wait around on the phone to make the appointments. I hate to wait on the phone and I just won't do it.
     Be clear about what you want your husband to do. I am happy that my husband weighs himself every morning, takes all his meds and does his exercises, but it is my responsability to look at his weight chart and translate it into actions. My husband is a follower and he will do almost anything within reason if he understands that he is to do it. However, he doesn't read up on his illness. He expects me to do this part: Read, get ready for the doctor visits and ask questions and remember things that are going on in our lives and his illness. He hates doing that so I do it.
     I guess my advice is to talk to your husband and take a long look at what each of you bring to your relationship and how best to handle this illness. What works for my husband and me is that we each do what we do best. Good luck, Susan B. gbratcher@kc.rr.com


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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