The paperwork never ends The Archives
Loved Ones - January, 2000 Archive Index CHFpatients.com

Gus R's 1-1 reply to Susan F's 12-31     misdiagnosis, doctors & more
 
Kathy O 1-3     brother very sick, what to say?
 
Jon's 1-3 reply to Kathy O's 1-3     maybe other arrangements are needed
 
Kathryn C's 1-3 reply to Susan F's 12-31     coping
 
Rebecca G 1-4     Disability & transplant questions, update & more
 
Jim Spraker 1-4     update on mom - any suggestions?
 
Pam 1-4     intro, sodium questions & more
 
Karen D's 1-4 reply to Becky G's 1-4     transplant, Disability & more
 
Jon's 1-4 reply to Becky G's 1-4     transplant, Disability
 
Jon's 1-4 reply to Jim Spraker's 1-4     keeping mom out of the hospital
 
Jon's 1-4 reply to Pam's 1-4     eating extra sodium?
 
Becky's 1-5 reply to Jon's 1-4     thank you, Disability, God's plan & more
 
Melinda 1-6     questions about coughs, ACE inhibitors & more
 
Paul B's 1-7 reply to Melinda's 1-6     ACE inhibitors & ARBs
 
Kathy 1-7     questions - weighing, & memory loss
 
Bill D's 1-7 reply to Kathy's 1-7     weighing & memory
 
Jon's 1-7 reply to Kathy's 1-7     weighing, meds & memory
 
Lori T 1-9     grandmothers' incoherence with CHF - questions
 
Jon's 1-9 reply to Lori T's 1-9     one possibility
 
Armen 1-9     leg pain & blistering question
 
Ruthie A 1-10     update on my mom, prayers
 
Monica's 1-10 reply to Armen's 1-9     leg pain & cramping & blistering
 
Monica F 1-10     Tom's story, blod clots in lungs & more
 
Karen E 1-10     good news, keep the faith!
 
Robbie 1-11     our Greg died - words of advice
 
Leslie Morris 1-11     seek SSD rules advice
 
Kirsten N 1-13     need advice about my dad
 
Karen D 1-13     new e-mail address & to Leslie
 
Katie 1-13     IV dobutamine questions & more
 
Gus R's 1-13 reply to Leslie Morris' 1-11     SSD benefits
 
Jeanne 1-14     leg blisters & pain - questions
 
Jon's 1-14 reply to Jeanne's 1-14     do you know the cause?
 
Katie 1-14     update, typo correction
 
Heather 1-17     questions about my dad
 
Jon's January 17 reply to Heather's 1-17     working, LVADs
 
Jim Spraker 1-17     thanks for prayer & seek IV drug info
 
Jon's 1-17 reply to Jim Spraker's 1-17     IV drug info
 
Pat B 1-17     what can my mom do to feel better?
 
Eric 1-18     seek advice about my mom's condition
 
Jon's 1-18 reply to Pat B's 1-17     a few questions
 
Virginia R 1-20     new development, have questions
 
Pat B's 1-20 reply to Jon's 1-18     more info, fluid retention
 
Jon's 1-20 reply to Pat B's 1-20     maybe stronger diuretics by IV are needed
 
Bobby K 1-21     my dad's CHF - have questions
 
Bill D's 1-21 reply to Bobby K's 1-21     CHF meds & more
 
Karen Edge's 1-22 reply to Bobby K's 1-21     coping
 
Virginia R's 1-23 reply to Bobby K's 1-21     value of a CHF specialist
 
Becky C 1-23     does anyone else have CHF, diabetes & lupus?
 
Rick 1-24     thanks for the information
 
Pat B's 1-24 reply to Jon's 1-17     mom's meds, chest procedure question
 
Jon's 1-24 reply to Pat B's 1-24     chest procedure info
 
Marti H 1-24     intro, need low sodium advice & more
 
Kathryn 1-27     using arms overhead & Coreg questions
 
Jon's 1-27 reply to Kathryn's 1-27     using arms overhead & Coreg
 
Jon's 1-27 reply to Marti H's 1-24     helping your mom
 
Ben B's 1-27 reply to Kathryn's 1-27     Coreg info & use, worth the pain
 
Karen E's 1-28 reply to Marti H's 1-24     helping mom cope
 
Ellen 1-30     how common are palpitations in CHF?
 
Mary 1-30     seek Coreg info & help for my husband
 
Jon's 1-30 reply to Mary's 1-30     Coreg info & more
 
Gus R's 1-31 reply to Ellen's 1-30     heart palpitations
 
Jon's 1-30 reply to Ellen's 1-30     palpitations are common for CHFers & more
 
Jill 1-31     questions about depression & seek CHF info


Gus R's January 1, 2000 reply to Susan F's December 31, 1999 - Hi Susan, I just read your post and was trying to come up with something to say to you with little success. Then I read Jon's answer to you. I agree with all he said, particularly: "That's what you give a person when you dwell on his actions over time: power over you." It is likely that your mother's death was hastened by poor treatment, but that would be hard to prove. Jon is right, put it behind you. You might be thinking that it's easy for strangers to say that, but will be hard for you to do. I can understand your feelings, that a group of medical people may have ruined or ended your mother's life, but now the important thing is to prevent them from ruining yours. In my opinion, the medical profession is very similar to the computer industry. They both do amazing things at times but their failure rate is even more amazing. If we buy a $3 can opener that doesn't work right, we get mad and demand our money back and usually get it. Let some doc kill one of our loved ones and they'll charge us thousands of dollars for doing it and there's no way to get a refund. It doesn't make sense but that's the way it is. Best wishes, Gus R. gus13@net66.com


Kathy O, January 3, 2000 - Hi, This is my first time at this site. My brother has CHF and it is horrible. It's been 3 months and he is not any better. He had pneumonia, but is over that. He swells up like a pregnant woman, can't sleep and the doctors are having trouble getting his meds to do some good. What can be said as encouragement or help? On top of all this, he is my 83 year old mother's caregiver and now he is sick! kathyok@jps.net


Jon's January 3 reply to Kathy O's January 3, 2000 - Hi Kathy, You haven't told us anything about your brother's meds, test results, or even his name, so I can't comment much. I will say that you should make other plans for taking care of your mother, if her current caregiver has CHF. Have you read The Manual yet? Give it a read, pass it on to your brother by printing it out for him, and feel free to ask any questions you have as you read. Jon.


Kathryn C's, January 3, 2000 reply to Susan F's December 31, 1999 - Hi Susan, I was very moved by your post about losing your Mother so suddenly. I lost my Mother when I was 13 due to accidental asphyxiation (choking on food). It is so difficult to lose our family. We often end up second guessing ourselves and our doctors; the if-only syndrome.
     Jon's reply was wonderful. My 26 year old son has CHF and no cause for it can be named. He was also misdiagnosed until a chest x-ray showed his enlarged heart. While he was in the hospital on monitors, he collapsed (he was due to go home the next day) and had a seizure. Then while in CCU, we almost lost him another couple of times. They don't know why; sometimes there is no cause to be named. I feel truly blessed that he was in the hospital when all this happened and not at home. I am certain he wouldn't have survived if he had not been under hospital care. I believe God has plans for him to stay around a bit longer. We are blessed to have him with us now and for as long as God allows.
     Jon is also so very right about the healing process. It takes a lot longer to heal from a wound if you keep poking at it, and in my opinion, that's what we do when we don't accept our fate and mission here on earth. I am not a particularly religious person, but I have a substantial spiritual belief in God. Trust me, I prayed my brains out while my son was in CCU and I continue to pray for his comfort and happiness daily. I will add a prayer for your healing and your mother's comfort in heaven. God bless you. Kathryncole@hotmail.com


Rebecca G, January 4, 2000 - Hi, It's been awhile since I sent any message. I come to this site and that of the CHFers a couple of times a week usually. I read the messages and responses, and I learn from you all or feel for you individually. I appreciate this site beyond words.
      My husband Elton was hospitalized in April, took weeks off work, was checked and rechecked. An echocardiogram revealed severe heart damage and an EF of 15-17. His 6 month check up revealed no improvement, although he does feel well. One upside of this site is your continual admonition to go by how you feel and not by the EF numbers.
     Elton has been a coach all his working life. He is not coaching now. For a week or two this summer, we worried much about his even having a job this school year. The school where he teaches decided to honor their contract with him, whether he could continue to coach or not. That was a relief. As things have turned out, a science teacher left unexpectedly and Elton has been able to take that teacher's classes and "earn" his contracted salary. That is a relief and big time blessing! From all we read and learned about Elton's possible future, he went ahead in June and applied for Disability. Surprise, surprise, we received notification 2 weeks ago that Elton had been approved for Disability benefits but that they did not find his birth certificate on file.
     Well, we know he doesn't really qualify because he's working. Every move, every decision is so stressful. and uncertain! Should he be working? If he suddenly worsens and needs the Disability benefits, they won't be there. He'll have to reapply and it'll take 5-6 months again. Right now, it's so easy to forget the severity of his heart tests when he seems so well. Our primary care physician has referred Elton for the battery of tests to determine if he is a good candidate for a heart transplant. We started that today with a full day at the hospital. The social worker and the doctor both said he seems an excellent candidate. We didn't get to the financial person, but we learned this much: no way could we even afford the drugs he would need following a transplant, and, if he feels good, would it even be wise to try a transplant? Oh, my.
     I don't offer opinions to Elton. I just absorb. I do pass along every encouraging thing I can. I do worry lots, even about his memory and about his "slowness." Are these new problems related to the CHF? They seem to have come with it. I think I just needed to talk, to spill all this out. Thanks for listening and providing the platform for this message. Thanks for caring one for another. Becky G. RebeccaG99@aol.com


Jim Spraker, January 4, 2000 - Hi again friends, I have good news to report. Mom's kidney function is much better and her doctors have lowered her medication. For a while, her weight dropped. The last week or so it seemed to stabilize, but now her weight is inching up again. She still feels well and I don't want to go through what we have worked so hard to overcome since August. She is on 3.125mg Coreg twice a day, 12.5mg Aldactone twice a day and 40mg Lasix twice a day (but only once concurrent with the Aldactone). We have to watch her kidneys and I am giving her about 1140cc of fluid and restricting her sodium intake. Her output the last couple of days has been between 800 and 850cc. Any suggestions? Friedlander51@hotmail.com


Pam, January 4, 2000 - Hi everyone, I just found this site and I'm so grateful; Thanks for being here! I have a very dear friend named Randy who was diagnosed with CHF in August. He had gained about 50lbs over a one month period of time. He was afraid to go to the hospital. He thought he was having a severe allergy attack. He does suffer from asthma and allergies. He did finally go to the doctor and she prescribed Lasix. After about a week he began to slowly drop the water weight. He is now back down to a nearly normal weight.
     During this time, there has been much experimentation to get the meds right. He's still taking Lasix, and is also taking Zestrol and digoxin. It seems to keep him fairly comfortable but about 2 weeks ago he suffered what his doctor felt was a "seizure." This was because every joint in his body ached severely afterward. She felt the seizure was brought on from his blood pressure being too low, so she decreased the amount of one medication and told him to increase his sodium intake. Does this seem right? I'm sorry I don't know which med it was right at the moment but the increase in sodium just sent alarm bells off in my head. What do you consider a low sodium daily intake? How do you know if it's low enough?
     We just read The Manual and it explained so many things; the fatigue, dizziness, mood swings, all of it. It's not a pleasant prospect we're faced with here but it makes so much more sense now. Take everything one moment at a time and be thankful for each moment you have. You just never know. Thanks for being here. whammy78@hotmail.com


Karen D's January 4 reply to Becky G's January 4, 2000 - Hi Becky, I'm glad you posted your questions and concerns. You must be overwhelmed right now with the decisions you are facing. Have you met with the transplant cardiologist yet? In my husband Bill's case, she told us right up front that she considers it her job to keep patients well enough to avoid having to have a transplant, and she has managed to do that for more than a year now. When Bill first was evaluated, his EF was 12-15%. A year later it's almost 40%. What medications is Elton taking? Is he on Coreg yet? Is he keeping his sodium under 2000mg daily and limiting his fluids to less than 2 liters a day? Do you know what caused his CHF?
     In Bill's case, there was no way that he could continue to work, so he applied for and is receiving SSD. However, he also qualified for a small medical disability pension from his employer and we have continued his health insurance through them. The premiums have even been discounted a little bit. Once he has been on SSD for 2 years, Medicaid will kick in. Does your husband have insurance that he could continue through his school? Do you work, and could you add him to your insurance? As I understand it, if he is currently covered, and you add him as your dependent, there is no penalty for a pre-existing condition. Check with your State Insurance Commissioner, though, to be sure.
     Is he a veteran? The social worker who talked to us during Bill's transplant evaluation told us that because Bill was a veteran he also could receive treatment and drug coverage through the VA if needed or wanted. The transplant center Bill goes to uses what is called a Vo2Max test to determine whether the patient needs a transplant. Jon has a description of that test here. Although how your husband feels is very important, it's also important to have all the test results and to discuss the various options with your transplant cardiologist. You also mentioned Elton's slowness and memory.
     Yes, I believe that is definitely a part of CHF. Bill can hardly remember a thing some days and his verbal responses to questions or comments are slower than normal for him. Please let us know how things are going, and if you want to talk, feel free to e-mail me. Karen D. deitemey@kua.net


Jon's January 4 reply to Becky G's January 4, 2000 - Hi Becky, Karen and I are on the same page here. I believe one of the most improper things that happens to someone just diagnosed with severe heart failure is that line, "You'll need a transplant right away." I heard it too. Here I am, more than 5 years later, functioning quite well with my poor tired old heart, thank you. <g>
     Certain patients will need a transplant right away, but they are far and away the small minority. The smart money is on keeping your natural heart as long as possible. It's easier on the patient, the family, the doctors and the wallet. Heart transplant saves a lot of lives, and when it's time to have one, it's time to have one. However, it is in fact trading one set of problems for another set of problems. The time to have a heart transplant is when the set of future transplant problems is smaller than the set of current heart failure problems.
     Disability is a tough call. My opinion is to take it now and then stay under their monthly earnings limit but it's a very personal decision. Jon.


Jon's January 4 reply to Jim Spraker's January 4, 2000 - Hi Jim, 1140cc daily may be a bit strict. Unless that's been specified by her CHF specialist, I'd say 2 liters fluid intake a day is sufficiently tight enough.
     Having her weigh herself every morning is a crucial ingredient to keeping her out of the hospital. Be sure she and her doctor have agreed to her taking extra diuretics when she retains fluid, per that daily weigh-in. Don't jump on the diuretic bandwagon unless she gains 2 pounds in 24 hours, though. If she does take an extra diuretic, she also needs to take an extra potassium supplement (prescription, because they are slow-release).
     Other than that, I think I pretty much put all my suggestions in The Manual. I hope someone can throw a few extra suggestions your way. Jon.


Jon's January 4 reply to Pam's January 4, 2000 - Hi Pam, I think I'd try to find another doctor, if I were your friend. The usual suggestion for CHFers is 2000mg (2 grams) of dietary sodium intake per day. It certainly doesn't hurt to cut that in half once you get used to low sodium eating. If he is not retaining fluid at 2000mg sodium per day while maintaining a steady diuretic dose, it is probably low enough. Once he starts retaining fluid, it's wise to cut dietary sodium further immediately, and keep it down to reduce stress on the heart and kidneys.
     Keep in mind that the US government has set the proper daily adult sodium intake at only 2400mg, so we're not talking about a huge sacrifice here. <g> Most Americans eat enough sodium every day to jerk a whole cow (as in making beef jerky). Jon.


Becky's January 5 reply to Jon's January 4, 2000 - Hi, Thank you Jon, for your reply, for this message site, for The Manual, for everything! This is all pretty impressive and valuable. Your comments on keeping the natural heart are comforting and helpful.
     About the Disability, I don't know how we have the choice. He has a contract with the school and it would really leave them in a mess if he suddenly left. Since August, Elton has been drawing a salary larger than the allowable amount. The social worker at the transplant center gave good advice on calling this a trial work period, which it is truthfully and has been all along, but the last person he talked to at the Social Security office didn't leave a door open to even talk about that. Elton plans to go in again ASAP.
     Right now, he's nursing gout and surrendering to a stomach bug. He's better today. I told him the crutches he was having to use due to the gout probably would have been a good touch for that visit on the Disability. Oh, well, as I said to Karen, it's been so evident that we are on God's time table and in His care through all this. So, we'll see what He does. Thank you again and keep us in your prayers. My faith has not been strong the last few years due to some bad happening to good people events. I'm afraid I spent some time embracing depression.
     Many of the messages lately have touched on that, on not letting someone who dealt us a hurt have the power to continue to control our lives. As said, God is revealing Himself in our CHF trial. It is time to let go of the past and hold on to Him. Thanks, Becky. RebeccaG99@aol.com


Melinda, January 6, 2000 - Hi, My father has CHF and seems to be going downhill fast lately. I am 9 months pregnant and 750 miles away, and trying to follow up on things with my mother over the phone. I have a question about the ACE inhibitor cough. Is it the kind of cough that can go on continuously for half hour or more? Can it be so violent that afterward a person can be completely exhausted? This is the type of cough my father has. My mother is convinced it is the ACE inhibitor and with his regular doctor off with the flu, she has convinced another doctor to take him off it. Does this sound like an ACE inhibitor cough or something else? Has anyone else had this same type of cough? If so, any suggestions on coping with it? Thanks Jon, for your wonderful site and thanks to anyone who can give me some insight. Kerramel@earthlink.net


Paul B's January 7 reply to Melinda's January 6, 2000 - Hi Melinda, Instead of dropping the ACE inhibitor, it would probably be better to go to an ACE 2 blocker. The benefits of ACE inhibitors are just too much to ignore. Good luck and God bless. wkhj@gcnet.net


Kathy, January 7, 2000 - Hi everyone, I read the posts daily and find much help and support here. I have a quick question: Does it matter when my husband weighs himself? He checks his weight every evening about the same time, and also checks his BP and pulse. I have noticed a couple of times in the posts that others check their weight in the morning rather than the evening.
     One other thing: Memory problems are so frustrating! My husband can't remember who he just talked to or the combination to a lock, etc. It's just weird. I feel so sorry for him because it makes him feel helpless. He's only 45, has DCM with an EF of 38%, up from the low 20s last spring), good days and bad days are the norm. I never know which it's going to be. Sometimes his BP goes as high as 158/110 and pulse at 105, then way down to 110/65 and 70bpm. The doctor told him he needed to lose 10lbs. He's been trying for a month and hasn't lost an ounce. He is not taking a diuretic at this time and I'm wondering if that's why he can't lose any weight. His other meds are 3.125mg Coreg once a day, 50mg Cozaar once a day, 25mg amitriptyline in the evening and some dopa-something for RLS (this was just added in November). With the RLS diagnosis, his sleep doc took him from 50mg amitriptyline to 25mg in case it was affecting his feeling groggy in the AM. Now he's even crabbier than he was before. Any comments are welcome! Again, thank you all so much! dei@frontiernet.net


Bill D's January 7 reply to Kathy's January 7, 2000 - Hi Kathy, The best time for him to weigh himself is when he gets up in the morning, in his birthday suit. If he does it in the evening it will reflect what he ate for lunch and dinner, plus what he drank during the day.
     As far as taking Lasix, it depends on whether his ankles swell up by evening or does he feel bloated around his lungs, stomach or his heart? Is he going to a competent cardiologist? The systolic BP isn't bad but varying diastolic BP from 110 to 65 is of some concern. Some people feel fine in the 50s. I feel bad if it drops below 60. One hundred and ten is quite high. Have you told his doctor about it?
     Twenty-five percent of the oxygen in a healthy person's blood is used by the brain. If his Ejection Fraction is only 38, he's only getting two-thirds of the oxygen he should be getting. EF's vary all over. I'm sure mine goes from 20 on a bad day to 40 on a good day. When it's at 20, I can't remember beans. Does his ability to remember things vary as much as mine does? That amytriptiline used to be for epileptics to block signals to the brain that were causing seizures. That could be the culprit in his remembering things. Let us know. Bill D. billdog@gate.net


Jon's January 7 reply to Kathy's January 7, 2000 - Hiya Kathy, Bill hit all the pertinent points and he gave you the major reasons in a nutshell. Some minor reasons to weigh in the morning are: Habitual "chores" performed in the morning are easier to maintain over time. There is less food in the stomach than at any other time of day to affect weight. It also gives you more time to call the doc if you see a drastic weight increase in 24 hours. Weigh yourself in the evening and you're stuck with the ER or an on-call doctor if you need to see a doc right away.
     I have problems remembering my own address sometimes. Like Bill said, I think this is partly due to meds and partly due to CHF. The drug your husband takes for RLS may be Sinemet or Madopar, which are carbidopa-levodopa. They deliver levodopa to the brain, where it is converted to dopamine. The carbidopa slows the breakdown of levodopa so more of it gets to the brain. Also used for RLS are Permax (pergolide) and pramipexole. Because these drugs do affect brain chemicals, they might affect brain functions. This is very much an individual thing however and your husband should have a long talk with his doctor about changing his drug therapy to see if his memory improves.
     Bill is quite right that amitriptyline (Elavil) affects some people quite strongly. I discontinued it myself due to mental fuzziness. The bottom line is exactly what Bill said - our memory goes up and down, is partly due to poor heart function and partly due to meds. The best thing to do is to get with the doc and juggle meds - carefully - and see how much you can improve memory problems without bringing heart function too far down. On a very personal note, I personally believe that Coreg is a huge culprit in the memory department for us CHFers, but what are ya gonna do?! ;-) Jon.


Lori T, January 9, 2000 - Hi, My 88 year old grandmother was admitted to the hospital yesterday morning with CHF. Her doctor was confident it could be treated easily with a couple of days in the hospital, using oxygen, Lasix and other drugs whose names I can't recall. Overnight though, she has become incoherent. She doesn't know where she is, is not able to communicate at times, and just stares into space. This is not normal for her. Is this typical for CHF? Could lack of oxygen be causing this? Her levels were 74% when she was admitted, but bounced back to 97%. I'm not understanding how her mental capacities could have changed drastically overnight. I apologize for not using correct terminology or not knowing exactly what drugs she is on. This is all so new. My mom is with her and tells me she is not on any drugs that would cause her mental state to change. If anyone could shed any light on this for me, while I scramble to try and learn and understand what is going on, I would really appreciate it. Thanks in advance. thetaylors02@sprynet.com


Jon's January 9 reply to Lori T's January 9, 2000 - Hi Lori, I have no idea what is affecting her mental state but have the doctors investigated possible TIAs ? (mini-strokes; transient ischemic attacks) Jon.


Armen, January 9, 2000 - Hi, My mom has had CHF for about 5 years now. She was in the hospital for 2 weeks with severe swelling and redness in her legs. She was discharged about 2 weeks ago and now has severe pain in her legs. It is almost impossible for her to walk to the bathroom. We are taking her back to the hospital tomorrow but I wanted to know if anyone else has experienced the leg pain and blistering in the lower leg. Alainak@aol.com


Ruthie A, January 10, 2000 - Well, she did it again! My mother was admitted to the hospital the afternoon I talked with her; the morning she sounded so awful. By the time she went in, her kidneys had almost completely shut down. She barely had a blood pressure and a pulse, and was close to death, but your prayers and God's mercy pulled her through and she is now home from the hospital and doing fairly well, at least for her. Her breathing is still labored although her oxygen saturation is back up in the upper 90s. Thanks to all of you who sent notes of encouragement and support. I am glad this was not mother's time to go. I know it will come some day, but not today. Ruthie A. rlaba@mindspring.com


Monica's January 10 reply to Armen's January 9, 2000 - Hi Armen, My father had CHF with leg pain and blistering. A lot of it had to do with 3 things:
1) It would get worse when he didn't limit his sodium intake
2) It would get worse if he wasn't religious about taking his Lasix
3) Leg pain and cramping can be a sign of potassium deficiency.
     Is she taking a potassium supplement such as K-dur in addition to her multi-vitamins? MIKFEE@aol.com


Monica F, January 10, 2000 - Hi, My 43 year old husband was diagnosed with cardiomyopathy in July, 1999. I have finally started to digest that fact that this has happened to him and I am beginning to learn to live with it. I have known about Jon's Place for several months now but because of apparent denial and fright, I have not been able to read these posts until about a week ago. Thanks for this great site, Jon!
     The reason I am writing is to tell you about a very strange thing that happened with Tom. About 10 years ago, he had a chest x-ray done. They found some nodules on his lung. They did a special x-ray with dye and wrote it off as lumpoma of unknown causes. Well, when Tom entered the hospital with pneumonia in 7/99, this lumpoma was still there. They double-biopsied him at a community hospital here in Chicago. Still, they were baffled by what this could be and by the dimensions of these growths, which had not changed in 10 years.
     God was very good to us and led us to Loyola University's Dr. George Mullen. In 6 short months, Tom's heart strength has gone from an estimated 5-10% to 30-35%! He was weaned off the community hospital's dobutamine IV to 25mg Coreg twice a day. That is as much Coreg as he can tolerate. He is also taking K-dur, digoxin, Lasix, Vasotec, Coumadin, baby aspirin and Cozaar, along with a multi-vitamin. For now, he still maintains his full time position as a sheet metal foreman and he celebrated his 25th anniversary with the same firm this year! I do notice that he gets forgetful and somewhat confused every once in awhile but like you said Jon, the benefits of Coreg are apparently outweighing this inconvenience.
     Getting back to the reason I wrote this letter: When Tom had his last battery of tests done 2 months ago, the nodules on his lungs had disappeared. His doctor explained to us that the nodules were apparantly emboli and had been misdiagnosed all these years. This man was walking around with blood clots in his lungs for 10 years or more! He said that he had also seen this same thing happen with a doctor who just had a heart transplant due to cardiomyopathy. He said that apparantly Coumadin had dissolved the clots. If this sheds any light on any of you in your current situations, I hope I helped. God bless you all! MIKFEE@aol.com


Karen E, January 10, 2000 - Hi all, This is just a quick note to let you know that things are going really well here. Since my dad's mini-stroke, he seems to have recovered completely with all use and motion of his arm. I can't tell any difference in him mentally. His shortness of breath is better with daily doses of CoQ10 and his asthma meds. He's getting more exercise and wandering around more, without his cell phone. We thank our dear Savior for every good day we have. We treasure every moment of a semi-normal lifestyle. The tables seemed to have turned for the moment. I've had a bout of congestion and lost my voice for a few days and guess who came and checked on me? My Dad! For all of you who waiver occasionally, please keep your faith. Jesus will always see you through. Much love in Christ, Karen. kedge@ispchannel.com


Robbie, January 11, 2000 - Hello everyone, It has been a year since I wrote you last. I am going over in my mind so many events that engulfed my life a year ago. In doing so, I started feeling terribly alone even though I have so many loved ones around me. You see, on January 16th, my sweet heart, my love, returned home to our heavenly Father. Greg had CHF. I have returned to this site because of the sweet, loving, strong support I received here.
     We received the news of his need for a new heart in April of 1995. Greg continued to work right up to his last hospital stay. No one, especially his doctors, could figure out just how he managed working. It was a desk job but a very stressful one. Yet I believe that if he hadn't been working, he would have passed on much sooner. Greg's love still lives strong in my life and that of my childrens'. We miss him so very much. We were very blessed to have him in our lives.
     Love your husbands, wives, daughters, sons; love that person in your life who lives with CHF. Show them support and compassion. Read this site often! Learn everything you can, but don't forget yourselves and the others around you. You need to keep your health up, too. Most importantly, seek the heavenly Father's guidance! Jon, thank you from the bottom of my heart for everything. styners@yahoo.com


Leslie Morris, January 11, 2000 - Hi, My husband just received his Social Security back payments; Disability, not SSI. Does anyone know if it is legal to invest that money? Does it affect your monthly earnings if you earn money on it by investing? If John was to die, could it be inherited by family? If anyone has any experience with this, please let us know. Msons@fone.net


Kirsten N, January 13, 2000 - Hi, First I want to say thank you to Jon for this site. It is incredible! Before I ask my question, let me give you some background info. My father in law has CHF. He lives in Dallas, Texas, and has been receiving his care from Parkland Memorial Hospital. He has no insurance but gets basically free care through some program. The problem is that he sees a different doctor every time and is not really understanding what is going on. The other problem is his English is ok, but not great. We are in Portland, Oregon and feel frustrated not being able to get a straight answer. Do you think it is possible for us to speak with his doctors and get some answers? Are there any agencies that act as liasons? The hospital has done every test imaginable and has him on several medications but he has been suffering with shortness of breath, edema, stomach pain, and wheezing and coughing. The last time he went to the hospital with severe edema, they wouldn't admit him but just changed some medication. We feel helpless since we are so far away. I would appreciate any feedback. kjforjc@yahoo.com


Karen D, January 13, 2000 - Hi, I just wanted to let you know that our e-mail address has changed from deitemey@kua.net to bdeit@cfl.rr.com. That's good news that your husband got his back SSD Leslie, and if I were you, I think I'd call my Social Security office and ask them about investments and the interest. Karen. bdeit@cfl.rr.com


Katie D, January 13, 2000 - Hi, My 75 year old husband has had severe cardiomyopathy for several years. We spent the day together just doing nothing and it was wonderful. He has been feeling pretty good the last few weeks. He spent most of November and December in the hospital on dobutamine. He came home a few days before Christmas on a dobutamine pump and has been doing well, but today a question came to my mind: how long can a person continue on IV dobutamine before they start having more problems? His kidneys have not been functioning properly. He is on an 1800ml/day fluid intake restriction, 2 gram dietary sodium restriction and he takes allopurinol, Cordarone, Lasix, Lanoxin, Prinivil, spironolactone, Lipitor and glynase. He was on the Coreg for about a year but it didn't work out for him. I know he is seriously ill but he seems so healthy, especially now on the dobutamine. lowbigflyer@worldnet.att.net


Gus R's January 13 reply to Leslie Morris' January 11, 2000 - Hi Leslie, I am not an expert on the SSA but am certain that upon receipt, SSDI (Social Security Disability Insurance) benefits become the absolute property of the recipient, and can be used however they choose. As such, upon the death of the recipient, any remaining money or property purchased with those benefits, is an indistinguishable part of their estate and subject only to the laws governing that estate. The only exceptions I know of are that any benefits received for the month of the recipient's death and afterward, must be returned. Also, if a third party is involved in the receipt of, or has control of the benefits due to the recipient's incompetence, a form SSA-623 may need to be filed annually.
     As to earnings from investments: On their Web site the SSA has a "Red Book On Work Incentives" which says, "How Do We Figure Your Payment Amount? We base your SSDI payment amount on the worker's lifetime average earnings covered by Social Security. The payment amount is adjusted each year to compensate for cost-of-living increases. We may reduce the payment amount by Workers' Compensation payments (including Black Lung payments) and or public disability benefits (certain State and civil service disability benefits). Other income or resources do not affect the benefit amount." If you want the entire "Red Book" you can do a search for it at the SSA Website. (Jon's note: Gus included the Url but it's cgi so it will expire and it's 3 lines long, so it is almost impossible to include here - sorry. Try starting here and following the links if you'd rather not search - http://www.ssa.gov/pubs/10029.html#Part 3 Now back to Gus!) Or e-mail me and I'll forward it. Best wishes, Gus R. gus13@net66.com


Jeanne, January 14, 2000 - Hi, My mother in law has CHF. She is experiencing leg pain and blistering of the feet and legs. She is 84 years old and a diabetic. Her kidney function is diminished because of the diabetes. Even though she takes fluid pills, she is continually breaking out with the blisters. I know she isn't eating excess salt since I cook for her using only fresh ingredients. Does anyone have any comments regarding something we can do to help her? Thanks in advance. Jezepa@aol.com


Jon's January 14 reply to Jeanne's January 14, 2000 - Howdy-doo Jeanne, Do you know the cause of the blisters? Is it diabetes-related or CHF-related, meds, or something else entirely? My first instinct is to say that you need to know the cause before you can eliminate the problem. Hopefully, some of our diabetic CHFers can come up with something. Jon.


Katie, January 14, 2000 - Oh, what a chuckle we had here when I read my last post to my husband! His age is 57, not 75 (typo), even though he feels like 75 some days. The connecting information on dobutamine was a little helpful. He has been waiting for a new heart for a very long time now. Our hope is the dobutamine will help until a donor heart can be found. He is a very large build man and needs a very large heart. We are encouraged because about 4 months ago we met a heart recipient that could pass for his twin. He was celebrating the one year anniversary of his new heart and doing all the things my husband used to do. lowbigflyer@worldnet.att.net


Heather, January 17, 2000 - Hi, My dad was just told he has CHF. He is 53. We had no clue he had CHF, we thought he just had a bad cough. Well needless to say, this cough just got worse, never better. Your site has help a lot. After reading other sites I thought my dad had 2 years left at best. It was very helpful and I appreciate it! I also read a little about a left ventricular assist device. Do you know anything about this device? Also, will it be possible for my dad to still work? He is an electrican. Gezzuslvr@aol.com


Jon's January 17 reply to Heather's January 17, 2000 - Hi Heather, I don't know if your dad can continue to work or not. It depends entirely on how weak his heart was when he was diagnosed, how he responds to treatment, and what caused his heart disease. If the cause can be treated as well as the symptoms, he maybe able to work - or not. I just don't know. For LVAD information, have you read the ICDS & More page? Jon.


Jim Spraker, January 17, 2000 - Hi friends, First, thanks for the prayers. The power of prayer has pulled us through many crises and we are confident that your support can help us through this one as well. Jon, you mentioned some intravenous drugs that aid in getting rid of fluid, but without the side effects concurrent with the use of diuretics. Could you tell us about some of these? Friedlander51@hotmail.com


Jon's January 17 reply to Jim Spraker's January 17, 2000 - Hi Jim, As you know, all drugs have their own individual side effects problems. I was probably referring to inotropic drugs. Jon.


Pat B, January 17, 2000 - Hi Jon, I've been reading the messages on this site for a few months but have never had the nerve to add to the list. My 84 year old mother has had CHF from the early 1990s. At first, it started with a racing heart which was probably the first signs of her bad heart valve. In the beginning it was controlled with nitro pills. Over the last 5 years, more and more problems have been added: diabetes, fluid in the lungs, more aches, pains, sleeplessness, and on and on. Recently she spent 2 weeks in the hospital (touch of flu with high temperature and cough) to again have fluid removed. Last year she went for 6 months without having to go and get fluid removed. She worked in her garden and even did her normal household chores. As soon as the cold weather set in, she was going from once a month to almost weekly, to remove fluid. While in the hospital, she had 2 different medicines injected through a chest tube after the fluid subsided, which were to seal the cavity space between the lung and chest lining, and cause fluid build-up to subside. Is there any success story to this? She is now feeling more and more discomfort with all her ailments and seems to be getting tired of it all! Is there anything you can offer on this situation? Pat B. belculfine@home.com


Eric, January 18, 2000 - Hello all, My name is Eric, from Massachusetts. My mom has CHF and lately I am feeling really concerned. Allow me to give you a very quick history: My mom is 65 years old and had her first major heart attack about 5 years ago. Since then she has had 2 additional heart attacks and has had a defibrillator implanted. Mom is on a very large regimen of pills to control her health as well as her thyroid. Over the last few visits I have noticed that my mom has been very swollen in her face and legs; this past weekend more than the weekend before. She has indicated to me that, according to her doctor, the swelling is due to her taking prednisone. Mom is also having a very big problem with her legs. She has come to depend on her walking cane very heavily. My mom has informed her doctor of the pain she is in, in her legs and groin. The doctor said he thought perhaps it was arthritis. This I found very hard to believe, due to how quickly it has come on for her.
     I called my mom today to learn that she has been in bed all day, she believes that she has a stomach bug. She feels as though she may vomit if she eats or drinks. She has also developed a slight headache. She did call her doctor to let him know that she is feeling really badly today. Her doctor instructed her to take some Peptobismal and said the x-rays he ordered last week show that she doesn't have arthritis and he isn't sure what is going on with her legs.
     I guess I'm writing because I really am concerned that the leg problem has to do with her CHF. If anyone can relate to this or pass on any information that may help me understand what is going on with my mom, I would appreciate it. I love my mom very much and don't feel real comfortable with her doctor. Thank you for listening. eric69@ma.freei.net


Jon's January 18 reply to Pat B's January 17, 2000 - Hi Pat, Can you tell us what meds your mom takes? Any test results? How well is her diabetes controlled? Is she on a low sodium diet? This kind of information will make it a lot easier for us to give you answers that will be of real use to you. Jon.


Virginia R, January 20, 2000 - Hello everyone, There are many new names here and I feel badly that I've not kept up with all the changes here. I think the last time I wrote in, Dad was having an amputation. He ended up moving in with us for a couple of months to complete hyperbarics. This was in October. The cardiologist had given him (Mike W) an all-clear to move in with me near San Antonio. At that time the pressures were good in his heart, his fluid retention was under control and his pacemaker was doing well. He moved back home near Fort Worth at the end of December and began to experience severe exhaustion.
     I've been worried about fluid retention, which has begun to build back up. His blood pressure has been very low so we called the cardiologist. He went in for an appointment and was told that his heart is growing more and more "tired." I suppose that is because of the Coreg and other medicines. I guess what alarmed me is this: when drawing a vial of blood, it was filled halfway with "cholesterol" and only half with blood. This is a new development for him. Does anyone know what this means, physiologically speaking? I am dad's primary caretaker. This site has been terrific in helping me stay "a step ahead" or at least up to pace with his treatments. Thank you everyone. Thank you, Jon. giniroberts@hotmail.com


Pat B's January 20 reply to Jon's January 18, 2000 - Hi Jon, I don't have the name of all the drugs since my sister has been the major care giver for my mother, but a lot of the names I've seen in other messages look familiar. She takes a blood thinner, water pills, potassium and many others. The medicines for her diabetes control it, but her sugar count can be in the low 20s to the high 80s at times. Her biggest problem is the fluid buildup even after the medicines injected into her chest tube 2 weeks ago. She had to be admitted again to the hospital today to remove more fluid. I'll try and get the names of the medicines. Thanks, Pat B.


Jon's January 20 reply to Pat B's January 20, 2000 - Hi Pat, If she has fluid consistently building up in her lungs, she might need either a dose or drug change in her diuretics. For instance, she could be switched from Lasix to Bumex, which is far more powerful than Lasix. Of course, there may be reasons why Bumex is not suitable for her but there are other diuretics as well, and combining 2 is almost always better than just taking one alone. If that achieves nothing, perhaps she needs IV diuretics, since fluid retention prevents oral meds from being properly absorbed, limiting their effectiveness. Is she receiving IV diuretics? Also, if fluid rentention is serious, inotropic drugs may be considered. Jon.


Bobby K, January 21, 2000 - Hi everybody, What a great site! I especially appreciate its straightforwardness. My dad has been in poor health for quite some time, but it wasn't until recently that I learned that what he suffers from, among other things, is CHF. I was shocked at all the symptoms he was exhibiting: coughing, dry throat, trouble breathing, dizziness and lightheadedness, fatigue, and just recently swollen calves and ankles. I thought that it must have been a combination of several diseases. This site helped to explain things his PCP couldn't. I can't express how sad I am to see him this way, as all my life he's been to me one of the most hard-working, energetic people I've known. Of course, I may be biased.
     Anyway, he's 62 now and just retired, and this is really affecting him. He's very stubborn, hates hospitals, and only when he finally admitted to himself that his condition was serious did he go to a doctor. He normally goes by himself and doesn't share much info with me or my mother and siblings. All I knew until a couple of days ago was that he was taking what seemed to me to be a lot of drugs, none of which appeared to be helping. A couple of days ago I insisted on going to the doctor with him and what I basically got out of it was that it was very serious. He also has an abnormal heartbeat. I have a couple of questions hopefully somebody can help me out with.
     Does anybody know a competent, friendly CHF specialist in the Boston area? Boston, as I'm sure y'all are aware, has no shortage of superstar medical personnel; Too many, perhaps. I'm just looking for somebody who knows what he's doing and can convey findings honestly.
    My dad's on the following medications: amoxicillin, captopril, tussionex pennkinetic suspension, furosemide, prednisone, and albuterol. According to its stated purposes, each seems to have a function but it still seems like a lot to take. Is this normal? I'd like to have him try supplements like vitamins and CoQ10 as well, but they would add to the confusion, I would think.
     The scariest episode so far was about a year ago, well before his CHF was diagnosed. My dad woke up and he couldn't control his speech or its patterns. His voice was several pitches higher and he couldn't make a coherent sentence. He was conscious and aware that he had a problem. He did convey things like, "What's happening to me?" He struggled to speak, and when he did it was with a heavy, barely discernable accent. I don't believe he was on medication of any kind then, maybe just cough suppressants. He rested most of the day and my mother applied some oriental medicine like ginger. The next day he regained his speech but it's never been the same since. Once his speech was vibrant, now it is soft and deliberate. I believe it was from this day on that his energy was lost. I read on this site that memory can be affected but I don't know. Has anybody else experienced this? Was this an early symptom of CHF? I appreciate everybody's help. Again, thank you Jon, for putting this very helpful site up. bobbyk@onebox.com


Bill D's January 21 reply to Bobby K's January 21, 2000 - Hi Bobby, I'm in sympathy with your Dad's problems. I have a Mayo Pharmacist CD and thought I'd look up those medicines to guess all the things that are wrong with him. I didn't get very far. The Tussionex is a sort of super cough medicine that can be mixed with hundreds of things. One is Phenylpropanolamine, another is codeine or hydrocodone. That gets you a narcotic cough medicine that might be addictive. Prednisone is a steroid to fight inflammation but one of it's side effects may lower your ability to fight new infections. Amoxcillin is a penicillin to fight off those new infections. <g> Albuterol is to open his bronchial tubes to help him breath. Finally, Captopril is an ACE inhibitor that is the only primary med for CHF.
     Is he being seen by a cardiologist? His shortness of breath and swelling around the ankles is probably being caused by holding water in his tissues. I think you'll see that many of us were treated for the wrong disease, some of us for many years! Most of us take water pills to get rid of the water and we are on a strict low sodium diet. The part about his losing the ability to speak sounds like he had a stroke. To find a good cardiologist, preferrably in a CHF clinic, maybe you should call "Ask a Nurse" in your telephone book. Bill D. billdog@gate.net


Karen Edge's January 22 reply to Bobby K's January 21, 2000 - Hi, To Bobby, hang in there with your Dad. It sounds like you are one of his strongest allies. Remember there will be good days and bad days. kredge@hotmail.com


Virginia R's January 23 reply to Bobby K's January 21, 2000 - Hi, I agree with Bill and Karen, completely. It does sound like maybe your Dad had a stroke. I would definitely look for a Congestive Heart Failure Clinic that specializes in just that! They will be very knowledgeable, usually have a limited patient number so they can give good, concentrated care. It has been a life saver for my father. My dad just turned 60. He had to resign at the height of his career and that was very difficult for him. My father also takes diuretics to help with the swelling in his abdomen. It usually doesn't affect his legs very much. His quality of life is much better now that he sees a CHF specialist. I'll say a prayer for you all. giniroberts@hotmail.com


Becky C, January 23, 2000 - Hi, I have a question. My husband was diagnosed with CHF last May. He's only 29. Since then he has developed type 2 diabetes and now they think he has lupus. Does anyone else suffer from either of these? Let me know. Becky. smilesandhugs@hotmail.com


Rick, January 24, 2000 - Hi, Thank you for the information. I have a close relative who recently was diagnosed with CHF and I needed to find some information about it. I can't talk to the doctor since I live outside of the country. Thanks for your honest and informative descriptions. ricktruscott@yahoo.com


Pat B's January 24 reply to Jon's January 17, 2000 - Hi Jon, I got the list of medicines my mother is on from my sister. Here goes: Deponit - 0.4 nitro patch, 240mg Cardizem CD, 0.125mg Lanoxin, Diabeta, 80mg Lasix, 20mEq K-Dur, 25mg Atenolol, 500mg Ecotrin, and 125mg Vancocin HCl. When she went to the hospital last week, they determined after 4 uncomfortable x-rays that she didn't have enough fluid buildup to remove it. She just recently had the medicines introduced through a chest tube that were to "scar" the tissues so that when they heal, the cavity would be eliminated between the chest and lungs. This is supposed to reduce fluid buildup. This procedure is what I'm interested in finding out how successful this has been with others. My mother still has the usual difficulty in breathing as she always has had. Thanks for your help. Pat B.


Jon's January 24 reply to Pat B's January 24, 2000 - Hi Pat, It sounds like she is on standard CHF drug therapy. I am surprised that she takes oral vancomycin. It doesn't absorb well through the stomach (when taken by mouth) and only works for bacterial infections of the intestines. Honestly, I have never heard of any procedure even remotely similar to the one you describe. Not knowing its name and finding nothing about such a procedure in any of my CHF research, I can only point you to another forum where cardiologists answer questions. Try this site. Jon.


Marti H, January 24, 2000 - Hi, I'm new here. My 82 year old mother is in the hospital with CHF. She has had CAD for some time and had a heart attack 9 years ago and 4 angioplasties since then. In the last few months she has become weaker and less energetic. Then she got the flu! She had a flu shot but got the miserable stuff anyway. She wasn't doing well and Saturday before last, I took her to the hospital. She was admitted and did ok for about 6 hours. Then she had another heart attack. Her echo shows an EF of 25 and an angiogram shows 2 new lesions. Her kidneys weren't working for a while but now are much better. They moved her out of the CCU yesterday, and she is now on a telemetry unit.
     She won't eat any of the low sodium diet they are trying to give her and is very weak. She is very stubborn and insists she can't eat anything that tastes so bland. Her doctor says she is too weak to come home right away after she gets booted out of the acute care bed and will have to go to a SNF for awhile. She's so weak right now that she can't even stand up by herself, much less walk. She lives with me and I work all day. I truly don't know how I am going to take care of her. I love her very much and don't want to spend the time I have left with her fighting about what she eats and drinks. All suggestions on how to get her to eat a low sodium diet will be greatly appreciated, and any suggestions about anything relating to her care would be helpful. Thank you. beagle_mom@hotmail.com


Kathryn, January 27, 2000 - Hi, Just yesterday my son had to come home from work. He was feeling really tired, short of breath and a little dizzy. He has CHF and is being titrated up on Coreg. Every 2 weeks they add another 3.25mg twice a day. His latest titration was Tuesday and this incident happened Wednesday, when he went to work at 1:00 PM. He is up to 9.75mg Coreg twice a day now. One other thing; at work he was hanging up movie posters so he was stretching his arms overhead. I've heard that this can put an added load on the heart. He came home and called the doctor. His cardiologist is out of town for 2 weeks, so he got the run around at the cardiologist's and they had him call his primary care doc.
     To make a long story short, by the time we got through all the ropes on the telephone, his symptoms had subsided and he just went to bed and slept for 5 hours. My question is this: would reaching overhead and working with your arms up in the air cause a symptom flare up with CHF? Also, Coreg seems to be such a tricky drug to get on, ad I read a lot of "war" stories here and in the other section. Why do all the docs seem to think Coreg is so wonderful? Kathryncole@hotmail.com


Jon's January 27 reply to Kathryn's January 27, 2000 - Hi Kathryn, Yes, any time a CHFer keeps his arms up for awhile, it catches up with him later. When I do my stomach crunches every day with my hands behind my head, by the time I finish, both my arms have gone numb. Coreg is a life-saver, and that's why doctors are very "into it" for CHFers. Please read the Coreg page to see why they are so determined to get your son on it. Jon.


Jon's January 27 reply to Marti H's January 24, 2000 - Hi Marti, A low sodium diet will seem more bland at first, but there are many ways to make it tasty enough to avoid hassling your mom about it. Low sodium food does not have to taste anything like hospital food! <g> It does take extra effort because to keep the sodium down and the flavor up requires more fresh ingredients, but if you can find the time, she can eat very low sodium and still like her food. Please see Kitchen Corner for a start and then visit the Links page for other Web sites with low sodium info and mail order goods.
     The number one thing you can do for your mom is help her be compliant - take all her meds at the right times in the right doses without missing any. You'd be amazed at how easy it is to make mistakes when you take a so many different pills every day. I still make occasional mistakes myself. I usually use a pill planner and if I don't fill it on time and I get out the pill bottles to get my daily meds, I'm certain to mess it up. Please lay out her pills in a pill planner/organizer every week, so she can just empty the pills in the proper compartment (they are dated) into her hand and take them without fuss.
     You can find most of the helpful tips around this site pretty easily if you look but I'll add this: you should try to coax her into getting up and around whenever possible. Make it fun - anything from playing a board game to going for a ride to the park and just walking. The more active she is, even if she is really tired, the better she will feel both physically and emotionally. Jon.


Ben B's January 27 reply to Kathryn's January 27, 2000 - Hi, I think all of us tend to read the posts and interpret them based on our own feelings. If a person tends to think that their loved one is taking too much medicine, they are going to focus on the negative posts about Coreg. Some people do have rough side effects but I think there are far more people who credit dramatic rises in EF to this medication. Even people who have bad side effects try to tough it out, or get on another beta-blocker, because they know how great these medications are.
     Ultimately, it was the raw statistical data from the Coreg page at this site, plus other reading and word of mouth that caused me to press my doctor until I finally got on it. I don't know if it improved my EF or not, but I guess I'm one of the lucky ones who has had no side effects and actually feels better since taking it. I hope your son sticks with it.
     On a side note, this Coreg info and other information I've gotten here is why I think this site has actually helped to save my life. At least for the time being. <g> I don't think amazon.com could make a claim like that! bdbrinkman@ieee.org


Karen E's January 28 reply to Marti H's January 24, 2000 - Hi Marti, I have also found it very helpful if you can type and have a printer at home to make a list of all the meds and the dosages and then put such a list beside the meds so they can check them off. I always categorize the meds by the time of day; morning, breakfast, lunch, dinner, bedtime, and then list them at the appropriate times. Also, at the top I have made a space for vital signs for the day like heart rate, blood pressure, weight, things such as that. By making sure you list the dosages along with the name of the med, if you have to make an emergency run to the hospital all you have to do is grab the book. That way hospital personnel know what meds your mom is on and what she's taken that day and the proper dosages. It saves a lot of time. Hang in there. My dad was a big salt eater. Now if we don't put his "special" salt on the table, he asks for it. Love in Christ, Karen. kedge@ispchannel.com


Ellen, January 30, 2000 - Hi Jon and everyone else, First of all, I want to tell you Jon what a blessing this Web page is. I check into it every few days but it has been awhile since I have posted. I get a lot of information from the posts I read. I don't know of another place on the Web to get info for CHF. I have a question which I hope someone can help me with. My husband was diagnosed with CHF and cardiomyopathy almost 18 months ago. He told me he has been having palpitations almost daily, several times a day for the past month. I am really concerned; he refuses to let his doctor know. So my question is, is this something to be concerned about? Or is this normal for this condition? My husband wants to play it off, although he says it is scary and uncomfortable but I don't know what to think. He takes a lot of different medications: Lanoxin, Vasotec, potassium, Lasix, Coumadin, prilosec, folic acid. How common are heart palpitations in relation to CHF? ESmith2673@aol.com


Mary, January 30, 2000 - Hi, My husband has CHF. I've been trying to find information on Coreg, so I can ask my husband's doctor on it. My husband is going to a CHF clinic having dobutamine one day a week, 6 hours at a visit. He also has had 2 strokes and 2 heart attacks. He has a blockage of 75%. He has renal failure and is taking dialysis at home. Most of this is new to us. He can't have a heart transplant because of his kidneys and can't have a kidney transplant because of his heart. He is so weak he can hardly get out of his chair. He's on oxygen. They tell us we've got to just take one day at a time but I'm not ready to lose him so I'm trying to find all the information on any kind of help we can get. My husband is only 60. I want him here another 20 years or so. Please somebody, if you can give me any kind of information, I would really appreciate it. Thank you. Mary. msgranny@springcom.com


Jon's January 30 reply to Mary's January 30, 2000 - Hi Mary, There's a page full of information about Coreg here. Be sure to read my site index to find all the info that is available. Is your husband on a low sodium diet? That is very important! If he is being seen by a heart failure clinic, they may have a reason not to already have him on a beta-blocker like Coreg, although I couldn't tell you why. Be sure to print out the Coreg info and take it with you to show the doctor there. Jon.


Gus R's January 31 reply to Ellen's January 30, 2000 - Hi Ellen, I told my dox much more that they wanted to hear about my palpitations, and I advise your husband to do the same; Not because they are something that one should panic about, but because they are unpleasant at best and can sometimes be lessened or even eliminated if the doc is aware of them. I'm not sure how common palpitations are for CHFers but they certainly are not rare. At one time, mine came often enough and severe enough that they almost drove me crazy, but after a bunch of med changing (mostly for different reasons) I very seldom have them any more. Best wishes to all, Gus R. gus13@net66.com


Jon's January 31 reply to Ellen's January 30, 2000 - Hi Ellen, As usual, Gus is right on the money. I had severe palpitations for awhile. My CHF doctor hospitalized me for one day to be sure they weren't dangerous (my EKG went nuts), and then just said not to worry about them; Easy for him to say! I discovered that magnesium supplements available at any health food store, taken for a few months made my palpitations and my slight arrhythmia go away and I have not had them since. Your husband really needs to have his doctor check them out though, just to be sure they aren't a symptom of something more serious. By the way, so many CHFers get palpitations that I put it in The Manual! Jon.


Jill, January 31, 2000 - Hi, I'm so glad I found this site. Maybe someone out there can help me. I am caring for my 87 year old dad, who has CHF. He's had this condition for a long time but now it is worsening and he is getting really down. He is a retired pastor and has a deep faith but I can see that depression is causing him to give in and give up. My questions are: How do we both deal with the depression? How can I find out more info on the symptoms of CHF so that I know what is actually taking place physically to him? Thanks for the help. dlsmith2@hotmail.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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