The paperwork never ends The Archives
Loved Ones - July, 2002 Archive Index CHFpatients.com

Kelly S' 7-8 reply to Rita's 6-28     it can be very hard
 
Anita S' 7-8 reply to Rita's 6-28     it's tough but you can cope
 
Mike W's 7-8 reply to Rita's 6-28     acceptance comes
 
David A's 7-8 reply to Donna K's 6-29     potassium experience
 
Allyson 7-8     seeking some encouragement
 
Karen S' 7-8 reply to Rita's 6-29     similar experience & more
 
Judy's 7-8 reply to Jan's 6-12     it was methotrexate & more
 
Judy's 7-8 reply to Rita's 6-28     questions - being too hot, shoulders & arms hurting
 
Roseanne S' 7-8 reply to Donna K's 6-29     maybe this is why
 
Suzy Coulter's 7-8 reply to Rita's 6-28     coping with impending death
 
Tracie 7-8     high cyclosporine levels question
 
Jon's 7-8 reply to Tracie's 7-8     I hope someone else has an idea
 
Brenda M 7-8     seek advice on post-transplant problems
 
Jon's 7-8 reply to Brenda M's 7-8     post-transplant problems
 
Dawn's 7-9 reply to Rita's 6-28     thanks to caregivers, smoking & more
 
Jill 7-9     seek EECP experiences
 
Maureen 7-9     how to lower blood pressure?
 
Jon's 7-9 reply to Maureen's 7-9     one way to lower blood pressure
 
Roseanne S 7-10     update on my husband post-transplant
 
Roseanne S 7-10     DNR orders and 911 tip
 
Kelly's 7-11 reply to Allyson' 7-8     changing life style is hard but possible
 
Kelly's 7-11 reply to Roseanne S' 7-10     congratulations
 
Milly 7-11     please explain EF (ejection fraction)
 
Donna K 7-12     seek Imdur experiences
 
Jon's 7-12 reply to Donna K's 7-12     I have not taken Imdur
 
Sandy 7-13     a good news update
 
Donna K's 7-15 reply to Sandy's 7-13     that's great news!
 
Susan B's 7-15 reply to Sandy's 7-13     that's great news!
 
Denise 7-15     I could sure use some help
 
Vonda 7-16     any words of encouragement or advice?
 
Jon's 7-16 reply to Vonda's 7-16     from a CHFer's point of view
 
Anita S' 7-17 reply to Vonda's 7-16     coping and caregiving
 
Lisa Z's 7-18 reply to Vonda's 7-16     coping and caregiving
 
Bette 7-18     how do I resolve this in my mind?
 
Davida S' 7-18 reply to Denise's 7-15     restricting dietary salt can help & more
 
Davida S' 7-18 reply to Vonda's 7-16     hang in there
 
Susan B's 7-18 reply to Denise's 7-15     restricting dietary salt can help & more
 
Vonda 7-19     anyone feel they neglect their immediate family?
 
Davida S' 7-19 reply to Vonda's 7-19     families do this and it's a good thing
 
Kelly S' 7-20 reply to Sandy's 7-13     that's great news
 
Kelly S' 7-20 reply to Bette's 7-18     condolences
 
Kelly S 7-20     checking in, been busy lately
 
Elle R 7-20     writing a PPCM book - could use your help
 
Roseanne S' 7-22 reply to Vonda's 7-19     coping with caregiving
 
Vonda 7-23     newfound answers - thank you
 
Donna H 7-26     does this sound right to you?
 
Jon's 7-26 reply to Donna H's 7-26     no it does not & more;
 
Judy'd 7-26 reply to Jon's 7-26     Coumadin can be very important & more
 
Donna H's 7-27 reply to Jon's 7-26     update
 
Kelly S' 7-27 reply to Donna H's 7-26     questions should be welcomed
 
Kelly S 7-27     a hubby update
 
Vonda 7-27     need help making my mom feel better
 
Jon's 7-27 reply to Vonda's 7-27     some tips
 
Brenda M 7-29     mental aberrations after heart transplant
 
Jon's 7-29 reply to Brenda M's 7-29     mental aberrations after heart surgery
 
Roseanne S' 7-29 reply to Vonda's 7-27     calling docs for help, taking meds
 
Jon's 7-29 reply to Roseanne S' 7-29     staggering meds
 


Kelly S' July 8 reply to Rita's June 28, 2002 - Hi, I lost my dad to emphysema almost 9 years ago. It's definitely difficult to watch and even harder when they're still smoking and hurting themselves even more. My father never signed a DNR so the last time he was taken in via ambulance they had to rescusitate him and put in on a ventilator. He was on the ventilator for a month and removed from it on his 78th birthday. He lasted less than a month. He did quit smoking when he found out he had it but by then the major damage had been done. All we could do was make him as comfortable as possible. My prayers are with you and your family. larkel@locl.net


Anita S' July 8 reply to Rita's June 28, 2002 - Hello Rita, I am sorry to hear about your dad's failing health. One of the hardest things to cope with is the loss of someone you love. My 52 year old brother had lung cancer and in just a few months went from a healthy-looking man to not being able to walk because of the metatastic cancer tumors on his spine and the lack of oxygen. He was also put on a ventilator for about a week and when he was taken off of it, he signed a DNR order. This is sometimes hard for the family to accept and we told him how we felt, but it was his decision.
     Is your dad in a hospice program? My brother was and he was able to die at home. I was able to be there along with a lot of his friends and other family, and especially his wife and children. He was given enough pain killers to help him "cross over" as easily as the process could be made. A nurse was there to help us. If your family can handle this experience, then it can make things easier than waiting in a hospital room when his time comes. Of course, some people prefer being in a hospital and if that is how you feel, then that is certainly okay.
     When the time comes, you will be able to cope. Feel free to vent here anytime and if you have any questions, please feel free to e-mail me. You are in my thoughts and prayers. Take care, Anita. dreamersila@netscape.net


Mike W's July 8 reply to Rita's June 28, 2002 - Hi Rita, You sound so frightened and freaked out and overwhelmed and sad. Those are perfectly normal (and horribly painful) things to feel right now. I hope I don't sound cavalier, but in your father's dying there might be something good to be had for you and your father. There might be enough time for you to say things to, and learn things from, your dad that will be important to you and to your dad.
     The usual impulse is to withdraw from the fear and the pain. I'm only suggesting that since your dad's death does sound imminent that perhaps you might try the hardest thing in the world: to embrace your dad (and therefore his dying). I mean that literally and metaphorically. You might find that there may be important things for you to get from him and give to him in this most painful of times. There is a large risk here for you, of course. Your father may be too scared, too angry, too tormented to respond.
     This happened to me with my father's death and I'm really not brave at all, or "strong" and I realize fully that a big part of my experience was pure luck and coincidence, but it was (and still is) an incredibly meaningful and powerful experience for me. Most of all, I wish you acceptance. Peace, Mike Wafkowski. mikeyw@sohogurus.net


David A's July 8 reply to Donna K's June 29, 2002 - Hello Donna, This is David from the CHF side of things. I recognize the symptoms mentioned in your post because I have and continue to experience the same situation if I am not careful.
     To help minimize this situation a readjustment of medications and diet may be in order. What he is experiencing now is hyperkalemia (too much potassium). Most people on medication tend towards hypokalemia (too little potassium) and need to take a potassium supplement. In my case, my body seems to be a potassium retainer and a supplement is certainly not required. Taking Lasix will not drop my level as it does in most people. Also, zestril (an ACE inhibitor) may cause potassium levels in some individuals to increase.
     As far as diet goes he may need to adjust his diet and monitor his potassium intake. I use a book called "Vitamin and Mineral Counts" by Corinne T. Netzer (Dell Books) as my potassium guide. This book will help you from a dietary standpoint. Also, it is necessary to monitor the food package labels for potassium content. Of course, tomatoes are loaded in potassium so their consumption will need to be limited as I have tried to do.
     The doctors and I have continued to play around with my Lasix dose frequency. If I take it every day, sure enough, my potassium goes up as well as my BUN (dehydration). I now monitor my need for Lasix and take it only when needed for bloating, swelling, or breathing problems. Also, at one time I took zestril, but I now take a combination of hydralazine and isosorbide in its place. I have also been taking an ARB as well, in place of the zestril. Again, potassium may flare up unless you monitor your sphere of food and medicine dosages.
     The bottom line is that medicines, food, and fluid consumption are important to monitor and find what amounts are best for the individual while taking medications that are required for our conditions. Regards, David A. DEZEN@worldnet.att.net


Allyson, July 8, 2002 - Hi, I am only 24 years old. My husband is 33 and was recently diagnosed with malignant hypertension, congestive heart failure, and chronic renal (kidney) failure due to the high blood pressure. His doctors all say he is stable now and he has modified his life style, including diet and exercise. Still, I'm terrified that this is a death sentence. If anyone has any words of hope about living with this condition, please, please let me know. allyson_m@hotmail.com


Karen S' July 8 reply to Donna K's June 29, 2002 - Hi Donna, My husband's doctor has called before to tell him to quit taking one of his diuretics (zaroxolyn) because his kidneys were being adversely affected. He did, and the next blood work results were better. Please let us know what the doctor said about your husband. I hope all is well - as well as it can be - with both of you, Karen S. gstilley@hotmail.com


Karen S' July 8 reply to Rita's June 28, 2002 - Hi Rita, I'm sorry your dad is doing so poorly. I lost my dad to CHF when he was 47 years old. Now my husband (age 55) has it. I really wasn't aware that one could decline so quickly, so I have learned something from your experience. My dad was really sick like yours when he died. He was ready to go, and in a small way that made it easier for me to accept. It's been 25 years and I still miss my dad, but it was very hard to see him suffer. The good thing is that I know he isn't suffering in Heaven. Take care, Karen S. gstilley@hotmail.com


Judy's July 8 reply to Jan's June 12, 2002 - Hi Jan, I believe that it was methotrexate Jim was taking for his rheumatoid arthritis, and after about 3 years he COPD really got worse and he ended up on oxygen 24/7. jmiles@mhtc.net


Judy's July 8 reply to Rita's June 28, 2002 - Hi, Rita told of her dad being short of breath and so hot. Jim also has periods of extreme heat. Can anyone tell me what causes this? Is it the lungs? heart? He also complains often of his shoulders and upper arms hurting. Any ideas? Thanks for all your help. jmiles@mhtc.net


Roseanne S' July 8 reply to Donna K's June 29, 2002 - Hi Donna, I believe it is called CYA (cover your ass). The doctor may have wanted a witness to be able to say you were told to call him. Extremely high potassium can cause death, the same as extremely low potassium. Good luck, Roseanne. rschurick@hillcrest-gcc.com


Suzy Coulter's July 8 reply to Rita's June 28, 2002 - Hello everyone, I hope your holiday is terrific. I wander through here regularly and sometimes post. Rita, there is no way to anticipate the time for our loved ones to leave us. I have been there many times with my husband, and it's 14 years later. I have made some peace and realize neither of us have any control over when, just how. We are proactive and make sure everything is done, and spend time on the quality of life, just enjoying each day and each other. My husband has been on oxygen 100% for almost 2 years. He has difficulty walking and can even be exhausted by eating but he is positive and upbeat, and we count our blessings daily. We are praying for all of you, especially you Jon, for your continuing mission here to God's work. Suzy. sskbc@optonline.net


Tracie, July 8, 2002 - Hi, I was wondering if you had any info on reasons why cycloporine levels would keep going high even when the meds are constantly being lowered. My daughter had a heart transplant 8 years ago. About 2 months ago her cyclosporine levels started going high. It started out at 1.0 and they lowered it to 0.75, still high and so on. Today it's still high and lowered to 0.35. Have you heard of this before? The doctors can't figure out what is going on. I am just trying to research it myself. Thanks, Tracie. hmdmom2@hotmail.com


Jon's July 8 reply to Tracie's July 8, 2002 - Hi Tracie, I know you have probably already checked these things but I thought I'd mention them anyway: Vitamin E? It can raise levels significantly. Drug interactions? There are a lot of drugs that may alter cyclosporine levels if taken at the same time. Grapefruit juice? Also, some herbs can affect cyclosporine levels but as far as I know, the result is usually a lower cyclosporine level, not higher. I'm sorry I am not much help. Maybe someone else has an idea. Jon.


Brenda M, July 8, 2002 - Hi, My brother-in-law had a heart transplant in May. I am looking for any info from people who may have had this procedure and had problems. Nothing has gone right since the transplant. There doesn't seem to be any problem with the heart but everything else seems to be causing him problems. His heart team has run every test they can think of and not been able to find the problem. We don't know where to turn. Any suggestions? Thanks, Brenda. bmolton@yesconnect.net


Jon's July 8 reply to Brenda M's July 8, 2002 - Hi Brenda, Can you give more specifics about the actual problems or complications he is having? Heart transplant is exchanging one set of problems for another set of problems. The trick is to manage the new problems as well as possible. I don't know if we can help, but if you post some more specific info about what is going on, we'll try. Jon.


Dawn's July 9 reply to Rita's June 28, 2002 - Hi everyone, I'm from the other side and the first thing I want to say is thank you. Without all of you, we (the patients) wouldn't survive. I had a transplant December of 2000. I know that my family was having a hard time wanting to help but not being able to do anything. Just knowing that they were there helped more than any medicine. I hope you are able to quit smoking, not an easy task, I smoked for 20 years. The best thing about this site is you can vent and everyone understands. May God be with you. gdbeckford@sympatico.ca


Nancy S' July 9 reply to Ann S' July 8, 2002 - Hi Ann, I used to have upper back pain too, just between my shoulder blades. I don't know what caused it for sure but I think it was probably strain from fluid retention. Also, my heart was dilated to 7 1/4, so that may have been putting more pressure on it. Once I got on the proper medications it resolved itself. Another thing I got was muscle spasms, especially in the muscles in my lower back (the ones on the sides). I hope you have some relief soon, Nancy. ns1@alltel.net


Jill, July 9, 2002 - Hi, My husband is 59 and was diagnosed with CHF over 6 years ago. He continued working up till last April when he ended up in the hospital. I need to back up here. He had quadruple bypass in 1984, a heart attack afterward, a major heart attack in 1996 with another quadruple bypass, and this is when the CHF was diagnosed. He is still out on disability and has a difficult time with everyday living. The doctor has suggested he go for EECP treatment - enhanced external counterpulsation. Has anyone gone through this therapy? Any feedback would be appreciated. bnjschuelke@msn.com
 
Jon's note: There is an EECP forum on Yahoo here


Maureen, July 9, 2002 - Hi, My mom has CM and CHF. She is 71 years old. She went into "complete" heart failure due to Graves disease (hyperthyroidism) about 12 years ago. Her CM and CHF went untreated and undiagnosed for at least 10 years. Last year it was finally diagnosed and she has been on various medications since.
     My question is, she has been taking Coreg for 3 months and they increased it again last week. I believe she is at the highest recommended dose for her weight, but her blood pressure is extremely high, at 150/97. We've seen the bottom number go up to as much as 110. From everything I've read, low blood pressure on Coreg is a greater concern. Shouldn't the Coreg be lowering her blood pressure? She's having a tough time with the side effects and her doctors are now considering IV therapy. Thank you Jon, for this site, it has been a tremendous help, Mo. thenegotiator123@aol.com


Jon's July 9 reply to Maureen's July 9, 2002 - Hi Maureen, Coreg should lower her blood pressure. I don't know what Coreg-related side effects she is having trouble with but would suggest looking into hydralazine or hydralazine with isosorbide dinitrate if she has serious high blood pressure that doesn't want to come down with Coreg. This was the main CHF treatment before ACE inhibitors were introduced and really lowers blood pressure. Heart failure patients should not take calcium channel blockers (they increase risk of death), which are the other prime choice. I hope it helps - your mom is an exception. ;-) Jon.


Roseanne S, July 10, 2002 - Hi, Just an update on my husband. He had his heart transplant 11/15/01 and walked in a 5K on 7/4/02 in 90 degree weather and finished the 5K. rschurick@hillcrest-gcc.com


Roseanne S, July 10, 2002 - Hi, Just a note from my experience with DNR orders and 911. When my father was losing his battle with cancer and CHF, we were told by hospice not to call 911. 911 is required by law to resuscitate no matter what, even against DNR orders. rschurick@hillcrest-gcc.com


Kelly's July 11 reply to Allyson's July 8, 2002 - Hi, CHF is not a death sentence, just a warning that life style changes are needed. It sounds like your husband and you are on the right track. My husband was diagnosed when he was in his early 30s and his hardest struggles have been with change in diet and inability to perform tasks he used to be able to do. God bless and good luck to both of you. larkel@locl.net


Kelly's July 11 reply to Roseanne S' July 10, 2002 - Wahoo! That's great news. Tell your hubby major congrats and keep on walking. ;-) larkel@locl.net


Millie, July 11, 2002 - Hi everyone, I have a question. Dave went for a check up this past week and the doctor told us that his EF was very low at 30%. Can anyone explain exactly what an EF is and is 30 really that low? I believe it to be the ejection fraction, but I don't really understand that and the doctor seemed a little rushed this time. I'd appreciate any info. Thanks, Millie. mandrews@choiceonemail.com
 
Jon's note: See the link I put in your post


Donna K, July 12, 2002 - Hi everyone, I hope everyone is A-okay. Well, we went to the clinic today. We get to be tested, if that's what you call it, for sleep apeana, and have to have a sonogram to make sure he has no blockage in his kidneys. We also have 2 new meds: hydralazine and Imdur. Does anyone know about these? Good luck and God bless, Donna. kenyonclan@eartlink.net


Jon's July 12 reply to Donna K's July 12, 2002 - Hi Donna, I take hydralazine 3 times a day. It is very good for lowering blood pressure, among other things. One nice thing is that it has no rebound effect so if you ever have to stop taking it, you can just stop without tapering off the dose. Jon.


Sandy, July 13, 2002 - Hi, I just thought I'd post some good news for a change! Hubby had his echo and according to that, his EF has gone from 15% to 45% in three months. Of course that also involved a handful of meds 3 times a day and a triple bypass, but who's complaining? It's the best news we've had in months. Thanks to all of you for the support! :-) Sandy. sandy4014@aol.com


Donna K's July 15 reply to Sandy's July 13, 2002 - Hi Sandy, I'm very happy to here about your hubby! Lots of luck in the future. God bless, Donna. kenyonclan@earthlink.net


Susan B's July 15 reply to Sandy's July 13, 2002 - Dear Sandy, What wonderful news! I am so happy for you and your husband. Best wishes, Susan B. gbratcher@kc.rr.com


Denise, July 15, 2002 - Hi, My 67 year old mother just got out of the hospital for CHF. She had a triple bypass in 1999 and breast cancer surgery in 2001. They have her on 80mg Lasix twice a day, Lopressor twice a day, and Cozaar twice a day. Her breathing seemed to be better before she left the hospital but seemed to get worse when she came home, especially at night.
     They did pulmonary function tests on her and the lung doctor said that she wasn't taking deep breaths. He gave her combivent inhaler only because I insisted on something to try. They also did a bronchoscopy on her because of two nodes showing on CT scan of her lungs, near her bronchial tubes if I understand correctly. They said her lung lining was fragile and the areas were very inflamed. Washings and biopsies came back showing no tumors or infections.
     Now what to do to help her breathe? They just keep telling us it will resolve, but I want to know what about breathing now. We never add salt to any cooking we do and try to stay away from salty food, so I want to know what caused this and they can't seem to answer me.
     During the last 6 months she has been on at least 2 to 4 meds that have caused her trouble. Actos caused swelling so we had to stop it. Zoloft caused swelling and bronchial spasms so we stopped this one about 2 weeks before her hospital stay. Norvasc caused swelling and coughing. Couldn't all this help send her into CHF?
     I forgot to say that they did an echo that showed her EF as 55%. I don't know if I believe that about her heart. They did an echo one month before her open heart surgery and told us it was fine and then she had a heart attack and cath, and I was told that she had 2 monthes to live and that no surgery would help. Luckily another doctor sent her for surgery and that was almost 3 years ago. I don't know who or what to believe. I just want to help her be as comfortable as possible. jdenisep@msn.com


Vonda, July 16, 2002 - Hi, My mom is 57 years old and has CHF. She stays sick a lot. Her EF is 13%. I lost my dad to heart disease almost 4 years ago. I am willing to do anything to help my mom's life be as easy as possible. I am here to pray for her, sit with her, take care of her, whatever it takes to make up for all that she has ever done for me. I would appreciate any comforting words from any of you. jmgandme@aol.com


Jon's July 16 reply to Vonda's July 16, 2002 - Hi Vonda, Speaking as a CHFer, I can say that what you describe is the best thing you can do. When I am really sick, it's the constant presence of my loving family that makes me feel better than the drugs. Jon.


Anita S' July 17 reply to Vonda's July 16, 2002 - Hello Vonda, I agree with Jon that the best thing you can do is be there for your mom whenever she needs you. It sounds like you are the best daughter that a mother could ask for and I'm sure she appreciates that. Read The Manual and learn all you can about CHF and if anything happens, you will be comforted by the fact that you did everything you could have done to help your mom. CHFers can live a long time with this disease so try not to worry too much, and if you need help, just ask us. We care about you and are here if you need us. Take care, Anita. dreamersila@netscape.net


Lisa Z's July 18 reply to Vonda's July 16, 2002 - Hi Vonda, I can tell that you are a daughter that cares - a lot! I am an only child and my dad is 72. He has DCM, CHF, type 2 diabetes, and an ICD. Our road has been rough. We almost lost him in January, 2001.
     Right now, he is having a "good spell," thank God. He was diagnosed with DCM about 7 years ago and has outlived the text book odds. All I can tell you is that I am there for him and my mom as much as I can be. I love them more than I could ever express. We try to do fun things, and spend quality time together, even if it is just watching some tv.
     Just keep doing what you are doing, stay educated, and stay on top of your mom's doctors. I really monitor my dad's diet, and if anything is out of sync, I call his doctors. It is hard, and I get very scared sometimes, but I just try to cherish every single day. I was always blessed with my parent's unconditional love and you see so little of that these days. I am just trying to be there and be as supportive as I can.
     I wish you the very best. Keep visiting here - it is so helpful and Jon is truly a blessing. We are here to support you. Remember to take care of yourself too, so you can stay strong for your mom. Hang in there! zeigler@zbzoom.net


Bette, July 18, 2002 - Hi, In the past few years whenever I got anxious about my dad's CHF I would come to this board and receive comfort. It helped me tremendously one sad Christmas when I had to admit him to the hospital. One of my concerns was that he would not suffer at the end with CHF as I had heard all different kinds of stories.
     On Tuesday night he started vomiting and was put on an IV and oxygen, and sent to the ER in Knoxville at 6:30 PM. He died within an hour of arriving. I (by his request) had a DNR on him. He was 88.
     I guess what is really starting to bother me is - does the ER staff make them comfortable at the end? I talked with the doctor briefly and he said he would have had to make extraordinary measures to save him. However, I failed to ask him if they gave him morphine or continued him on the oxygen. Is there a procedure they follow for CHF patients? It makes me sad to think that he was all alone and left in a cubicle to die. How can I resolve this in my mind? wsh3rd@aol.com


Davida S' July 18 reply to Denise's July 15, 2002 - First, hello to everyone and sorry so long since I have posted. I have been in school since May and not coming in till after 10:00 PM. I had a much needed vacation in Disney World and am now planning my next summer vacation. I have just been very busy.
     Denise, it sounds like your mom has CHF very badly at the moment. The troubles at night may be caused by the excessive amount of fluid she has on her. The doctors are right when they say it will resolve itself to an extent. If the Lasix reduces the fluid, her heart will get stronger. Go for "no" salt, not "low"salt, and no processed foods. If it comes in a box, don't open it! Veggies should be canned no-salt-added type or frozen. Breakfast should be oatmeal or eggs and fruit. If she could manage a no-salt diet for a week or two you should see improvement. The goal in her case is to reduce the fluid and thus reduce the work load of her heart. cavalier_1@msn.com


Davida S' July 18 reply to Vonda's July 16, 2002 - Hi Vonda, Hang in there. My prayers go out to you and your mom. I pray that you receive the strength and guidance you need to continue to love and take care of your mom. Moms are very special people and this is a great site to get information and encouragement. Lots of information here will assist you in providing and getting the best care possible for your mom. Take care. cavalier_1@msn.com


Susan B's July 18 reply to Denise's July 15, 2002 - Hello Denise, How mixed up everything sounds in your world. Stop and take a deep breath or two. It seems like you need to stop the world for a moment and catch your breath. Do this so that you can think clearly.
     You need a plan of attack. First, get a clear understanding of where you are with your mother's doctors. Does your mom understand what is going on? You say that you don't know who to believe, is your mom in the same boat? Have the doctor met with you both to get a clear understanding of the doctor's treatment and the plan.
     After that, I would likely get a second opinion. Get with a doctor that your mom can trust. The Block Cancer Center might help with names of cancer docs (the center is in Kansas City, Missouri). Jon has a list of heart docs. Get one off his list if you can, or ask around and find someone you can trust. Doctors are people too. They make mistakes and they don't always do everything correctly, but your mom needs to have doctor(s) that she can trust and work with.
     Second, after you find the "right" doc(s), get a plan - a treatment plan that your mom can live with.
     Third, learn all you can. I believe this site has saved my husband's life and some days, my life too. So, start learning. You cannot depend on anyone else to ask the right questions. You need info so that you can work with the doc(s).
     "Salt" is in many foods you may not expect to see it in. So while not salting the food is good, your mom may need much more. You need to read all the food labels. Look at ice cream for how much "sodium" is in it. Food need not taste salty to be filled with sodium (salt). My husband's biggy is soft drinks. They have sodium in them too. I hope this helps. Good luck. I am praying for you and your mother. Susan B. gbratcher@kc.rr.com


Vonda, July 19, 2002 - Hi, I am so blessed to have found this site. I think all of you are going to help me and give me hope. Just this week my mom and I went to the CHF clinic and met with her nurse practitioner for the first time. She is a wonderful person and has done so much in just 2 visits. We have seen so many doctors who haven't really helped but this lady, I think, is an angel. She taught me exactly how to look for fluid on momma, how to check the extension of the vessel in her neck, and best of all I can call her 24-7 if we have any problems.
     Today I feel hopeful and thank all of you so much. By the way, is anyone out there stressed by taking care of your own family and home, yet have a loved one that you desire to be with? Not that I think my girls or husband resent my helping my mom but I feel as though I've neglected them. My 16 year old stays with my mom most of the time when I'm not there. I do, by the way, have siblings but it's on me! I have a working husband, a teenage daughter, 10 year old daughter and a 5 year old about to start school. God bless each of you for your time, Vonda. jmgandme@aol.com


Davida S' July 19 reply to Vonda's July 19, 2002 - Hi Vonda, This is what families that love each other do for each other. You are teaching your children very valuable life lessons. This could be them or even their own parents. It is not forever, it's just for now, is my philosophy. Do your best to show them you still can be a mom and a wife and a daughter. Some people have more roles than that and 2 jobs. I know you feel like you are being pulled in all directions, but mom is sick and it's all hands on deck. Make sure you give out lots of hugs and kisses to everybody involved, including your mom. That reassures everyone of your love for them. cavalier_1@msn.com


Kelly S' July 20 reply to Sandy's July 13, 2002 - Hi, That's wonderful news, Sandy. Here's hoping everything continues to improve. larkel@locl.net


Kelly S' July 20 reply to Bette's July 18, 2002 - Hi Bette, I am sorry for the loss of your father. I lost my dad almost 9 years ago after a long struggle with emphysema. The last month was very difficult. My dad was too scared to sign a DNR and was removed from the ventilator on his 78th birthday. We lost him on April 6th. It was a bright sunny morning and he was in a deep coma.
     Even though I miss him daily, I know he's no longer suffering and I thank God for that. Bette, my prayers go out to you. It's never easy to lose a loved one, but be thankful that he's no longer suffering and is at peace. larkel@locl.net


Kelly S, July 20, 2002 - Hi, I've been busy with work at work and at home, and haven't posted lately. Here's hoping this finds everyone doing well. Larry still has up and down days, but it seems lately they've been more on the up side. As always, I enjoy reading everyone's posts and it seems that each time I visit I learn something new. Jon, thanks again for such a great site. larkel@locl.net


Elle R, July 20, 2002 - Hello everyone, I am writing a book about women living with peripartum cardiomyopathy (PPCM Survivors). This book will bring awareness to PPCM. I need your help! If I could please ask your participation in this, I would greatly appreciate it. As this is a book about bringing PPCM "awareness" I would like to feature your expertise as well - your experiences and stories and opinions.
     The book will be truthful and honest about our experiences, good and bad. Most of all, it will let everyone know that we are survivors no matter what challenges we encounter in life, especially living with PPCM. If you are a female living with DCM or CHF (not necessarily PPCM) and raising children, please feel free to participate. All input would be extremely helpful.
     Please e-mail me at CHFaith02@aol.com to participate by filling out a questionnaire. I look forward to working with you on this project! God bless. CHFaith02@aol.com


Roseanne S' July 22 reply to Vonda's July 19, 2002 - Hi Vonda, Everyone feels stressed, way beyond anything they have ever felt in their life. Wanting to do what is right for everyone leaves you feeling like you aren't making anyone happy. There is only one of you and you are doing the best you can, and everyone will just have to accept that.
     The best thing you can do for yourself and your family is to try and come out of this with no regrets. No "I wish I had" or "I should have" - just know you have done your best. Even though every day may feel like forever, someday you will look back on this time and it will seem like no time at all.
     When my husband was very ill and I was trying to be with him every day and work full-time, there were days I woke up crying, wondering how I was going to manage to keep going even one more day, while I was on my way to the shower doing what I had to do and praying to God to give me the strength to do what had to be done. I have no idea how I would have managed if I had children at home.
     You have found a wonderful site to receive information, advice, and a place to safely vent. You and your children will come out of this knowing that you can handle anything! Rememeber to take some time for yourself. You are important too. Take care of yourself, Roseanne S. rschurick@seidata.com


Vonda, July 23, 2002 - Hi, I printed The Manual (9 printed pages) and took it to my mom's tonight. We read and discussed all topics. She looks at me and says, "We finally have answers. This person has been through it himself." My mom and I have been through so many unanswered questions. I have surfed the Internet, we have been to lung doctors, gastroenterologists, our family doctor, and cardiologists. You and our newfound clinic has been a life saver, literally. I pray the Lord will bless you! jmgandme@aol.com


Donna H, July 26, 2002 - Hi Jon, Thank you so much for maintaining this wonderful site. Everytime I come here, I learn something new. My husband is in the hospital again since last Tuesday. The last time he was in the hospital was January and we had taken him to an emergency room at the hospital we were nearest to at the time. They kept him for 4 days then and changed his meds around, adding Coreg.
     Unfortunately, they started him on 50mg per day. By coming to this forum, I realized the dosage was too high and our local doctor cut it to 25mg per day. From January to June, his EF went from 30 to 35%, to 40 to 45% and he was feeling much better. Then he started getting tired, having incidents of not being able to breathe and finally on Monday, he blacked out momentarily.
     He is very stubborn so it was Tuesday before I got him to the ER. I am 3 1/2 hours away, working and taking care of a teenager but am very frustrated by some of the things I hear from him when I call. The doctors are wanting to take him off both digoxin (Lanoxin) and Coreg completely, and Coumadin (warfarin) for awhile. They want him to come home on remote telemetry until they decide whether he needs to have his heart shocked or a pacemaker. Though they mention a pacemaker, a defibrillator (ICD) has never been talked about. He is always in a-fib but when I asked about that, the doctor said it isn't really a problem. It seems his heart is stopping for about 2 seconds at a time and that is why he is so tired and feeling so bad.
     I hate to see him off Coreg (they stopped Coreg, digoxin and Coumadin on Tuesday) because it was the med that seemed to finally make him feel better. I also am scared to have him home without the meds. I spent Wednesday at the hospital but always seemed to miss the doctors. I am going back down tomorrow to see what I can find out and (hopefully) bring him home.
     Would I be out of line to ask why no mention has been made of a defibrillator and if taking him off Coreg and digoxin so suddenly can cause problems? herdrich@grm.net


Jon's July 26 reply to Donna H's July 26, 2002 - Hi Donna, Thanks for the kind words. I am sorry your husband has been beat up by the medical crowd like this. You are absolutely proper and correct to ask these questions and more!
     Health care professionals are paid consultants - they are not your mommy and they are not your boss. If they think they are, you need to change doctors immediately. Any questions you have should be welcomed by your doctors. My own CHF doc has never, ever made me feel silly or like I am wasting his time when I ask questions - and I have asked some lulus, let me tell you!
     If it were me, I would be worried about stopping 3 heart meds at once. It is unusual because you cannot tell which drug was causing a problem when you stop more than one at a time. My doc is also very big on this idea, and I agree with him. On top of that, stopping beta-blockers suddenly is even dumber that starting them at full dose, so your husband is getting somewhat abused by his doctors, in my opinion. I would fire them, based on what you have said, although I know a situation is always more complex than it seems online. See this study: www.chfpatients.com/coreg.htm#stoppingbetas.
     A lot of this depends on why he passed out - for sure - and why his heart rhythm is not correct - exactly. These two things need to be discovered and quickly, so that treatment decisions are not made helter-skelter or in a broad, general fashion. Treatment changes should be as small as possible whenever possible to keep track of what each change really accomplishes in the way of benefit to your husband's life. Theory is not as important as visible results. Maybe an EPS is in order, maybe an event monitor like the one they are giving him, maybe something else.
     Coumadin is a good idea in someone with chronic a-fib. Again, I see no reason to stop it and lots of reasons to keep it going. I would strongly question this also. A-fib can cause a small pool of blood to stay in heart chambers. If it stays pooled too long - which is very possible - it can clot. If that clot moves, it can block a blood vessel and cause a stroke - not something to take lightly, and then some. So, a "blood thinner" like Coumadin is in my opinion, necessary for anyone in chronic a-fib.
     If it were me - and I am not a doctor - I would keep the meds going as is for now, and let the event monitor do its thing, then see what happens. For whatever it's worth, Jon.


Judy's July 26 reply to Jon's July 26, 2002 - Hi Jon, I wholeheartedly agree with you about stopping Coumadin. Some people like my husband are born clotters, I swear. Even allowing his INR (PT) to be too low will cause him to begin stroking. I have found that our doctors don't always know all there is to know about Coumadin and often don't take into consideration the specific person.
     Donna, again, if you don't feel right about what they are doing, refuse to take him home. You have to live with him and be responsible for him - not the doctors. jmiles@mhtc.net


Donna H's July 27 reply to Jon's July 26, 2002 - Hi Jon, As you said, things are always more complicated than they seem. Today I called until I got in touch with a doctor, and was pleasantly surprised by all that has been going on. She told me that the reason they stopped all his heart meds was to see what his heart would do without medication and the reason they stopped the Coumadin was because his blood was too thin and they are planning on doing surgery.
     Without the meds, they found that he had both tachycardia and bradycardia and that his heart is stopping for 2 to 3 seconds at a time. The meds aren't controlling it and seem to be making things worse. They have him scheduled for surgery Monday morning to put in a pacemaker. The doctor called me several times over the course of the day to tell me what was going on. My husband was wanting to come home for the weekend but she said the only way he could go was if he signed a statement releasing her from responsibility. When she told me that, I was convinced that she has his best interests at heart.
     At his best he is a somewhat difficult patient but when he isn't getting sufficient oxygen, he can be a real bear! I almost felt sorry for the poor doctor. <g> I am on my way back to the hospital now and am feeling much better about the situation. By nature I am not a very forceful person so often it is my own fault that I don't get the information I need. I am working on that though and your support has been invaluable. herdrich@grm.net


Kelly S' July 27 reply to Donna H's July 26, 2002 - Hi, I'm sorry to hear your hubby's having a rough time. Ask questions and if you don't understand, then let them know. Sometimes they forget we're lay people and they use big terms that we don't understand. We happen to have a wonderful CHF team and they've never, ever made us to feel that our questions were unnecessary.
     Here's hoping things get better and they are able to get your hubby on the proper meds so he's able to come home, and you're able to feel that having him home is a good thing. I'm glad you were able to talk to the doctors and get some answers. larkel@locl.net


Kelly S, July 27, 2002 - Hi, Larry went to his diabetes doctor yesterday and everything is looking good. They aren't changing his insulin and he seems to be pretty stabilized for now. I'm thinking either in August or September he will be going in to see the CHF doctor. He's still carrying a lot of extra weight and that's been bothering him. I am trying to get him out walking, but he's not much of a walker. Also, this week it's been much too humid here to be outside. larkel@locl.net


Vonda, July 27, 2002 - Hi, I have a question for anyone out there who can help. After finding a wonderful heart clinic and finally feeling like we were on our way to feeling better, I think my mom and I have done something wrong this week. She is feeling nauseated again and is back to coughing.
     We are due back at the clinic Wednesday for routine checkup but I want her to be doing better before then. Last time we went, they gave her a med. I don't have the name of it with me but it is the one that gathers all the fluid to help the Lasix release it. She took it for 2 days and after losing 8 lbs of fluid, they told her to take it every other day. If she were to take it a couple of days in a row, would it make her better again?
     Do you think I let her eat something with too much sodium? Or is there something else? She's not to the point of feeling like exercising yet, but I think she should at least do a little. It's like she'll feel good a couple of days and then get back to feeling yucky. Help, please. Thanks, Vonda. jmgandme@aol.com


Jon's July 27 reply to Vonda's July 27, 2002 - Hi Vonda, If you are talking about zaroxolyn, taking it 2 days in a row will not help nausea or coughing. A couple of things hit me here. First, you have to remember that CHFers have bad days, bad weeks, even bad months. We also have good days and weeks too, most of us.
     Second, when a certain med helps or hurts, it is tricky making sure exactly which med or which interaction between meds is doing it - or if it is actually her illness doing it, just cycling through good and bad.
     Try to understand - and everyone has trouble accepting this - that some things can just be coincidence. In other words, a meds change may fit the timing of a change in her condition, but that does not automatically mean that one is related to the other. It's a hard thing to remember because our human tendency is to immediately pin effect on the first possible cause we see.
     Try to be patient and keep a written log of her meds, when she takes them, the doses, which ones she takes together, and how she feels. Log every incident: dizziness, nausea, pain, shortness of breath, etc. This gives you and the doctors a real good shot at figuring out how to make her feel better both short-term and long-term.
     I hope it helps. Jon.


Brenda M, July 29, 2002 - Hi, The problems my brother-in-law is having are mostly mental now. The doctors say all the tests are coming back normal. Rick received the Heartmate pump in April of 2001. He did well and was able to come home in July, 2001. Tests showed some infection and he was admitted into the hospital for treatment of the infection. The doctors got the infection under control and decided to release him but the evening before he was to come home the pump quit with no warning, it just quit.
     He was placed on another pump that ran through the Heartmate but required him to stay in the hospital from November 27 of 2001 until the call came on May 17, 2002. His new heart was on its way. After the transplant we had the problems we where expecting with lungs and kidneys, but we didn't expect the mental side effects he is having.
     He doesn't know where he is most of the time, he talks to people who aren't there, and becomes very upset when we correct him. He refuses to do anything he needs to do to get better. It has been over 2 months since the transplant. The only thing the doctors can tell us is his Co2 level may be too high. We don't know how to care for him now. bmolton@yesconnect.net


Jon's July 29 reply to Brenda M's July 29, 2002 - Hi Brenda, I am very sorry things have gotten so difficult. I have no answers. A small but significant percentage of heart surgery patients suffer this, especially in heart bypass surgery. It is usually temporary but in some cases it never improves. It is a known side effect of heart surgery but doctors rarely - if ever - warn their patients about it as far as I know. See this article for more (let it load). Jon.


Roseanne S' July 29 reply to Vonda's July 27, 2002 - Hi Vonda, CHFers will have good days, weeks, and even months, then bam, you are reminded they are sick. If you have concerns about your mother's health between clinic visits, call them and talk to a nurse. They should be there to reassure you and help 24/7.
     One of the hardest things about all of this is knowing when you should be concerned and when it is nothing. I was blessed to be able to form a bond with our PCP's nurse. She never made me feel like I was bothering her, the same with the doctor. He told me to call 24/7. After we got into the CHF clinic, they provided the same service.
     If you are concerned and your mother is having problems, you should not have to wait for the next appointment. One other note, doctors seem to get really unhappy if you adjust meds without them telling you to, so I would avoid that one. However, you can try not taking all of the pills at that same time. It may not have been real, but hy husband was convinced it made a difference. Roseanne S. rschurick@hillcrest-gcc.com


Jon's July 29 reply to Roseanne S' July 29, 2002 - Hi Roseanne, He is right. It's even in The Manual that "staggering" your meds can help symptoms. :-) Jon.


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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