The paperwork never ends The Archives
Loved Ones - April, 2004 Archive Index

Jon 4-6     I'm back, sort of
Sheri 4-6     seek CHF doc in Delaware or Philadelphia
Arlene 4-6     seek info on prednisone
Valerie 4-6     I need some moral support
Walter K's 4-7 reply to Sheri's 4-6     CHF doc recommendation
Glenda 4-9     seek words of wisdom
Joanne 4-10     I don't know what to do
Lorie's 4-10 reply to Glenda's 4-9     coping
Katie M 4-12     I want my life back
Chelsie 4-12     rheumatic heart disease at age 14
Jon's 4-12 reply to Chelsie's 4-12     valve replacement question
Chelsie's 4-16 reply to Jon's 4-12     the whys and why nots
Jon's 4-16 reply to Chelsie's 4-16     the whys and why nots
Renee 4-20     seek info on CRT pacers and ICDs
Cathy D's 4-22 reply to Katie M's 4-12     focus on important things
Cathy D 4-22     intro
Kris' 4-29 reply to Renee's 4-20     biventricular pacemakers
Kris 4-29     getting better CRT from BiV pacers
Jesse 4-29     my father died and more

Jon, March 6, 2004 - Hi everyone, Well, having the flu bites. I am a bit behind now. <g> I will get caught up as I am able. Jon.

Sheri, March 6, 2004 - Hi, My mother-in-law needs a good CHF specialist and electrophysiologist in the Wilmington, Delaware area or Philadelphia area. She is also in need of a pulmonary specialist knowledgeable in pulmonary fibrosis, thanks to amiodarone. Can anyone recommend a patient, competent, caring doctor in that area? I did look on the CHF Specialist Directory (thank you Jon, for all the wonderful resources that you have made available) and I saw a number of specialists listed at the University of Pennsylvania, but I would really like a referral.

Arlene, March 6, 2004 - Hi, My mom (77 years old) has CHF and dilated cardiomyopathy. She also has a pacemaker for atrial fib. Her meds are Coreg, digoxin, nitro patch, and Cozaar. I'm constantly worried about her. She was recently on vacation in Florida and had to be hospitalized because her breathing wasn't right. The doctors found that she had a lung infection and put her on prednisone and an antiobotic as well. Now that she's home, her ankles have swelled and looked bruised. I was doing research on prednisone and it stated that people who take Coumadin (another of her meds) and digoxin should not take prednisone. She only took it for 7 days. How long does it stay in your system? Thanks for any replies.

Valerie, March 6, 2004 - Hi, My dad (60 years old) has had 2 heart surgeries and has been on milrinone 3 times a week through his pic line for 2 years. He has recently gotten worse and I am scared to death. He is not eating, skin color bad, sleeping 22 hours a day, very weak, difficulty swallowing. I am just wondering is anyone else here going through this or know someone that is? How do you cope? I am a Daddy's girl.
     I just found this site and trying to look for some insight on CHF. I am not familiar with this. Thanks ever so much. Valerie.

Walter K's April 7 reply to Sheri's March 6, 2004 - Hi Sheri, I use Dr. Susan Brozena, who is listed in Jon's CHF specialist directory. Her primary office is in Philadelphia but she has an office in Radnor also, and is there on Mondays (not sure if it is every Monday or not). Radnor is about as far from Wilmington as Philly is, but it is a lot less stressful getting there and easier to park. She is quite experienced, good, and caring. I suspect the other doctors in her group are good also but have no experience with them. The whole setup is excellent; if I call with a question I always get a call back the same day, an experience I have not had with any other doctor's office. The nurses there are great and very knowledgeable also. Good luck.

Glenda, April 9, 2004 - Hi everyone, My husband CJ is 60 years old and was diagnosed with CHF at the end of last July. He is on Coreg, Cozaar, a diuretic, and potassium. His heart is very enlarged - "enormous" I think his electrician said - and scarred. CJ has no CAD but that means we have no idea where the CHF came from. He had a biventricular pacemaker and ICD implanted in January.
     Today he returned from his second Vo2max test. His score on the first one was 15, this time it was 14.2, although he was able to go longer. His EF is around 25 to 30%, I think.
     At his doctors' urging and mine, he is going for a sleep study next week to see if he has sleep apnea. He has slept very poorly for years. He is so tired all the time and sleeps so much. Sometimes I feel like a single mom, with our two girls (ages 7 and 9). It is so hard to internalize how sick he is. Any words of wisdom out there?

Joanne, April 10, 2004 - Hi, My 14 year old daughter, who has been healthy until this fall and winter, was diagnosed with rheumatic fever March 10th. She started having problems at the end of October when I took her and her little sister to the doctor. The doctor treated the little one for strep and my 14 year old for a sinus infection. By the end of the week we were back at the doctor with joint pains.
     Anyway, we spent the winter running back and forth to the doctor and were even referred to a rheumatologist. By the time it was diagnosed as rheumatic fever, significant damage had been done to her mitral and aortic valves. She is being treated for chronic heart failure. She is on Lasix, digoxin, and Vasotec. Her EF was 48% when she left the hospital. She had been pretty much symptom-free except for being tired before they found out what was going on. Since we have been home she has gotten a little more tired.
     Last Sunday we ended up sitting in the ER because of chest pain. Nothing showed up on any of the tests. We were referred back to our PCP for follow up. She said to ask the cardiologist at our appointment on April 28 if this is to be expected. She has also been complaining of dizziness and nausea. I have called the pediatric cardiologist who refers us back to our PCP about the dizziness and nausea. Our PCP tells us to ask the cardiologist at our next appointment. I seem to be just going in circles. I am not sure what is going on.
     I lost a son at 18 months due to congenital heart disease; he was evalutated for a heart-lung transplant and ended up going into kidney failure and died. I never had problems with his doctors being up front with what was happening or giving me a runaround when I had questions. I know rheumatic fever is caused by untreated strep. I did not just sit home with a sick kid and not take her to the doctor. They never did a strep culture on her even though her sister had strep when all this started.
     I do not want to lose another child and do not know how I would cope if I did. I lived in Maryland when my son was born but live in North Carolina now so going to the doctors that treated my son is not an option. Because I never had this problem before I am not sure what I should do.
Jon's note: You may need new doctors, including a heart failure specialist. In the meantime, explain your needs to the cardiologist, that you need him to treat her symptoms as you report them (take you seriously and not bounce you back to the PCP). His job really is her quality of life. It's easy for doctors to get mired down in their narrow specialty area. Sometimes a reminder that patients are people and not just a heart or a pair of kidneys, helps a doctor's perspective. To get my CHF doc to take my insomnia seriously enough to treat it, I had to tell him it was either he treated the insomnia or I started quitting heart meds until I discovered what caused my insomnia. Just be ready to get a new doctor before going this route. Some doctors are incapable of viewing us as people. They shouldn't be doctors.

Lorie's April 10 reply to Glenda's April 9, 2004 - Hello Glenda, I am not sure that I have any words of wisdom for you. However, I can totally relate to how you are feeling. My husband experienced sudden cardiac death last May 26th at age 47. Our newborn baby was 5 weeks old and just came home from the hospital two days earlier when it happened.
     I imagine that having a newborn baby is difficult enough when you have two fully functioning parents. It is even more challenging when one of those parents is trying to recover from a life altering event. My husband too is exhausted all the time. He has grown tired of being tired.
     I can appreciate when you said that you feel like a single mom. I often struggle with feelings of guilt because I feel angry that he is not more available to us. Then I have to remember that he is really doing the best he can. He struggles with depression still, exhaustion, pain, medication, insomnia, diet changes, stress at work, and paying the bills. All of this while trying to be the best daddy he can be.
     Hopefully, he will continue to improve and someday soon my husband will be back again. Until then, the truth of the matter is that our friendship will have to sustain us through these hard times. Like I said earlier, no real words of wisdom but at least you know that you are not alone in your feelings. Peace.

Katie M, April 12, 2004 - Hi, My husband is 29 years old and was diagnosed with cardiomyopathy last year. He had an ejection fraction of about 40 at the time and they were happy with that. They sent him to cardiac rehab and put him on an ACE inhibitor and another drug, but no digoxin because he has kidney disease. His his right heart cath showed low pressures. They said he was dehydrated (he has chronic diarrhea) and that the dehydration may have caused the heart problem. He was told to drink a lot and exercise. He improved clinically and felt great until a few weeks ago.
     He got what he thought was bronchitis but when it didn't respond to treatment he ended up at the ER in congestive heart failure. His ejection fraction is down to 10 to 15%. He was evaluated at the University of Florida last week for heart transplant. We meet with a cardiologist up there on the 29th to see what their recommendation is, whether more meds or transplant. He has trouble tolerating beta-blockers. He kept fainting when they put him on it, even at a very low dose. They may take him off one of the other drugs in order to get him on the beta-blocker. He no longer has fluid in his lungs and 2 weeks after being hospitalized for CHF his right heart cath again showed low pressure, that he was hypovolemic.
     They cut his Lasix dose in half and increased his fluids some; no salt of course. Now we are just waiting. I turned 28 yesterday and we have an almost 5 year old son. We had planned on trying to get pregnant again this month but now we don't know if he will live long enough to have more children. Plus, he is on disability at his job because the job involves lifting. We may lose our home or at the least have to rent it out and move in with my parents, if he is out of work long-term. I home school my son and I don't want to have to put him in school with all the other changes in his life. I have to watch out that he isn't absorbing too much of this. I just want my life back!

Chelsie, April 12, 2004 - Hi, I have Rheumatic Heart Disease and I am taking Lasix, digoxin, and Vasotec. I am 14 years old. I have been really tired lately. I have no idea how to cope with this, because it is so hard to believe that it is happening to me. I have major damage done to my mitral and aortic valves and will eventually have to get them replaced and I am very worried about getting the replacements. Do you have any ideas on how to cope with Rheumatic Heart Disease?

Jon's April 12 reply to Chelsie's April 12, 2004 - Hi Chelsie, I don't know too much about rheumatic heart disease but wonder why your doctors are not scheduling you for immediate valve replacement. It seems to me - although I could be wrong - that the sooner you have your heart valves repaired or replaced, the less damage your heart muscle will suffer, the less damage your other organs will suffer, and the sooner you will feel better. Did the doctor give you a specific reason why he wants you to wait for your valve replacements? Jon.

Chelsie's April 16 reply to Jon's April 12, 2004 - Hi, I really don't know why they won't go ahead and replace the valves! All I know is that they don't want to replace my valves yet. I wish that they would go ahead and replace them for me and maybe I won't be as tired! Chelsie.

Jon's April 16 reply to Chelsie's April 16, 2004 - Hi Chelsie, One thing to keep in mind is that doctors get paid the big bucks to explain your options as well as to help implement them. Always ask, "Why?" over and over until you understand both what your options are, and what they mean if you do them and if you don't.
     Doctors work for you! They are not your mommy and they are not your boss. You can fire a doctor any time you choose and if they want to control your treatment rather than partner with you in your treatment, you have the wrong doctor.
     I strongly suggest that you get a second opinion from a heart failure specialist who is not affiliated with your current cardiologist's practice. If you wait too long to have your valves repaired, your heart muscle could suffer long-term damage. I am not a doctor and I don't know your exact situation but please, get that second opinion, and soon. Jon.

Renee, April 20, 2004 - Hi, The cardiologist has referred my husband to an electrophysiologist. He says that he needs a biventricular pacemaker with an ICD. He says that this type of pacemaker can help the ventricles shrink. He says Frankie's heart can stop at any time and this device will be essential. Does anyone know anything about these devices?

Cathy D's April 22 reply to Katie M's April 12, 2004 - Hi Katie, I sympathize with you. It is so not fair. I think all of us have been in your shoes, and maybe still are. Sudden disability hurts the whole family. None of us ever planned on being here, at this age or any age.
     I have no magic words for you, but let me encourage you to put your marriage first, above everything else. My hubby and I have been married 23 years, but we didn't get it right until 3 years ago when he was diagnosed with a brain tumor. Overnight our lives were re-prioritized. Don't waste time wishing for your old reality - it's not coming back. Instead, find ways to enjoy each other and fall in love again, with no strings attached, no regret, fully and madly in love.
     Try not to include your child in everything, especially private, worried conversations. They absorb so much. I have home schooled my 3 kids for the last 12 years, but finally had to realize that someone else could do that job. My husband needed me more. They have thrived, in part because they aren't so exposed to all the crisis and worry.
     Our marriage has ultimately been strengthened amidst the chaos that is our life now. Whether he lives or whether he dies, help him live his life with joy! Hang in there, sister. Cathy.

Cathy D, April 22, 2004 - Hi, Well, since I jumped in there and offered advice, I guess I'd better introduce myself. My hubby and I are both age 47 and have 3 kids. Last summer, my hubby was treated for suspected atypical pneumonia. As he became sicker, a lung biopsy revealed sarcoidosis, an auto-immune disoder which causes severe scarring of the lungs. It took over 5 months for him to stabilize but with the help of meds, prayer, and lung rehab he was able to return to work in February. He worked exactly 14 days.
     On a Friday night he developed a low-grade fever. Saturday morning we went to the ER to get an x-ray since he has been on prednisone for months. By the time we got there he was shocky and quickly went into full blown septic shock. It soon became evident that he was in heart failure. His cath revealed high lung pressures, weak ventricles, class 3 CHF and a non-functioning sino-atrial node. A biventricular pacemaker was implanted. His cardiac team believes the sarcoid tissue has invaded his heart. His risk for sudden death remains high.
     The hardest part for me has been taking on so much of the parenting load.Our 17 year old made a suicide attempt 3 weeks before this heart event. He was on Zoloft. Our 9 year old is severely mentally handicapped and autistic, and he requires close attention and constant hands-on care. My 11 year old is experiencing learning problems that threaten to fail her in 5th grade.
     At first I thought, well, I'll just work more and he'll be Mr. Mom, but it doesn't work that way. He is too fragile and too overwhelmed. So my job (I'm a registered nurse) has been reduced drastically. However, I find as time goes on, that we all adjust. We can't change the past and we can't control the future. We just thought we could. Our lives will never be the same, ever.
     Every day I try to find something fun to see or do for him, like reading jokes out of the Reader's Digest or digging a hole so my hubby can plant his tomatoes, or lying in the hammock together and trying to guess what kind of plane that is in the sky. Mostly, he just wants me all to himself for a few hours every day, and who wouldn't want that?!
     I love this site and get a lot of encouragement from it, so y'all hang in there, pull your hats down low, and keep walking one step at a time. Cathy.

Kris' April 29 reply to Renee's April 20, 2004 - Hi, A biventricular pacemaker is one that sends an electrical impulse to the right and left ventricles of the heart. Historically, pacemakers have only sent electrical impulses to the right side of the heart, but due to recent advances in technology and a greater understanding of the relationship between the electrical and mechanical function of the heart, many cardiologists and electrophysiologists (EPs) are recommending the implantation of a BiV pacer.
     In a normal heart, the two lower chambers (those responsible for pumping blood to the lungs and extremities) contract nearly simultaneously. To do that, the electrical signal travels through specialized cells capable of conducting that electrical impulse very rapidly to both sides of the heart.
     A normal (right-sided) pacemaker cannot be connected to those specialized cells, hence the contraction of the ventricles does not occur simultaneously. In a biventricular pacer, stimulation occurs from two distant points on the bottom chambers of the heart, which helps speed the time it takes for the heart to contract both chambers.
     Not only does it help do that because of the points from which it stimulates, the programmability of the pacemaker is such that clinicians can program the optimal amount of time that the left chamber should be stimulated before the right chamber. Timing is critical within the heart and a well-timed electrical impulse can mean a better mechanical contraction, causing more blood to be ejected from the heart and greater amounts of blood to reach the vital organs.
     I hope this is thorough enough without being too deep. Please reply with any questions.

Kris, April 29, 2004 - Hi, To those of you who have received or who have loved ones who have received biventricular pacemakers for CHF, I have been in several parts of the country where a procedure called atrioventricular optimization (AV Op for short) has been done to improve the mechanical function of the heart. I have heard from cardiologists who do not believe in its efficacy, and I have heard from doctors and patents who say they have seen minor miracles worked by the procedure.
     It involves adjusting the timing interval between the atria and the ventricles using echocardiography and a pacemaker programmer. The principle behind the practice is that in order to pump blood, there must be a delay between the contraction of the atria and the contraction of the ventricles. Each person's body and condition are slightly different and no one delay suits every person. Using echo and a programmer, this delay can be adjusted to find the point at which the heart achieves the greatest stroke volume (the amount of blood ejected from the heart with each contraction). Greater stroke volume can mean better circulation and better use of a biventricular pacing system.
     Currently this procedure is only being used for patients with 3-lead biventricular pacing systems.

Jesse, April 29, 2004 - Hi, My father passed away on Thursday, April 22, 2004. He had CHF for only 2 years before his heart gave out in his sleep. We frequented this page for information and inspiration and I want to say thanks.
     I also want to say: Don't fight with your loved ones about whether they are drinking too much liquid, not eating right, etc. Just love them while you can. My father and I had a great relationship and I will miss him dearly. I get to know that we were best friends when he passed. We weren't "not talking" because we were mad at each other.
     Anyway, I am rambling. All I am saying is love them and cut them some slack. Having heart issues is something someone with a good heart will never understand until it is too late.

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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