The paperwork never ends The Archives
Loved Ones - September, 2001 Archive Index CHFpatients.com

Davida S' 9-1 reply to Deborah L's 8-27     my low sodium cooking
 
Tia 9-4     need someone to talk to
 
Kat R 9-4     questions about my husband's situation
 
Roy's 9-5 reply to Tia's 9-4     you are not alone & more
 
Susan B's 9-5 reply to Kat R's 9-4     coping with husband's CHF
 
Kat R 9-5     update, more questions
 
Roy 9-7     sodium restriction questions
 
Suzy Coulter's 9-7 reply to Kat R's 9-5     dealing with serious illness
 
Wendy's 9-7 reply to Tia's 9-4     hope to hear from you
 
Carolyn N 9-7     scared about mom's CHF
 
Davida S' 9-8 reply to Roy's 9-7     low sodium diet, salt intake suggestions
 
Karen D's 9-8 reply to Roy's 9-7     low sodium diet, salt intake suggestions
 
Carolyn N 9-8     exercise question
 
Karen D 9-8     thanks for Url
 
Susan B's 9-10 reply to Roy's 9-7     tracking weight
 
Susan B's 9-10 reply to Carolyn N's 9-8     cardiac rehab might help & more
 
David H 9-10     PPCM question & more
 
Kat R 9-10     not knowing drives me nuts
 
Carolyn N 9-10     thanks and a question
 
Ben B's 9-11 reply to Carolyn N's 9-10     spotlight web site
 
Roseanne S' 9-11 reply to Kat R's 9-10     long ICU stay experiences
 
Davida S 9-12     salad dressing tip
 
Kat R 9-13     update - good news so far
 
Kat R 9-14     update
 
Roy 9-14     thank you
 
Jon9-29     where is everybody?!


Davida S' September 1 reply to Deborah L's August 27, 2001 - Hi Deborah, If your boyfriend is outside sweating he should replace his fluids. Usually taking small sips while sweating helps more than taking in a large amount suddenly. My husband's doctors say he should take a little extra if he is sweating a lot. My husband gets 64 oz a day with 10 to 12 oz more on sweaty days. Basically, he allows himself four 16 oz glasses a day. He has a 16 oz glass that he drinks from all day to insure he is within limits.
     As far as salt intake, you can make most of the meals you made before but without salt. Take into consideration all the ingredients, though. We use only no salt added canned vegetables. I use cream of chicken and mushroom in stews. The Healthy Choice lines have less salt than others may have. I also use salad as fillers to help get fullness. As an example, if I was to use Hamburger Helper, I would first boil about 2 servings of regular noodles and add them to the Hamburger Helper. This is what I call stretching the salt. I do the same with Rice-a-Roni. I get more servings and less salt per serving. Make the same meals with low salt ingredients. When I make chili the only salt comes from the can of tomatoes. No sodium is awful and almost impossible but low sodium is manageable. cavalier_1@msn.com


Tia, September 4, 2001 - Hi, I am a 22 year old female whose husband has CHF. He is also 22 years old. He had a heart transplant when he was 14 years old. I am looking for some support or just someone to talk to about this. My husband is very sick and the doctors are saying that they cannot do anything else for him but another transplant. Please, I just want someone to talk to! Thanks, Tia. hippiechick_29@hotmail.com


Kat R, September 4, 2001 - Hi, What a weekend! My fella has not been feeling well lately an is taking a lot of nitro pills. Sunday morning he called and said that the pains in his chest and left arm were finally gone but he still had a heavy feeling in his chest. I found out that he had a gurgling sound in his chest. I told him to get to the hospital and after a few minutes back and forth I convinced him to go. He called that night saying that they had admitted him and he had many tests done. He has a great doctor, the same one my deceased husband had, so I trust him completely. His EF was very low when he arrived and he was told that the pain stopped because the artery on the back of his heart became completely blocked.
     He is still having problems with his breathing and has a dry, hacking cough. He has elected not to have the surgery and will have his medications adjusted. He had 4 quarts of fluid drained and is feeling better. He was told that because work was important to him, he could return to work and just modify his schedule. I am concerned about his health and previously (when first diagnosed) he suffered from panic attacks and refused to venture far from home. He is being put on Lasix and other meds are being adjusted.
     What can I do to help him? What does all of this mean? Can a person still lead a fairly normal life after an episode like this? Any reassuring help or insight would be greatly appreciated. Thanks so much for all your help, Kat R. krohrer@jacobsmarketing.com


Roy's September 5 reply to Tia's September 4, 2001 - Hi Tia, My mum was diagnosed with CHF recently. The news sent my life into turmoil. I am slowly starting to understand more about this condition, but still feel constantly confused and overwhelmed. Please don't feel that you are alone. I have received encouragment, guidance and support from Jon's Place. I will sincerely provide as much support as I am able to give. Thank you to Jon and everyone out there for making making a life a little more bearable, Roy. roy_karia@hotmail.com


Susan B's September 5 reply to Kat R's September 4, 2001 - Dear Kat, Start with what the doctor is telling you. How is your fella doing? Have you read The Manual? I have friends with a 40% EF and they are living a full life. Rehab can make a big difference in quality of life. My husband has an EF of 15 to 20% and his oxygen was down to 81% when walking, and now he is much better after the drugs and rehab. His Vo2max was over 17.
     His mind can also play a big role in how he does. My husband told me he would be one of the people who get much better in the first year and he is. I also believe in the power of prayer. My clients, friends, and family all prayed for his health. I thank God for their prayers and his answer.
     Read everything you can about his illness; this web site is a great place to start. I also like the links and the videos (click "Healthology" at the top left of this page). Continue to ask questions. Knowledge is power. I think doctors forget that we don't have the knowledge and training they have, and forget to tell us important information.
     Ask him what he wants you to do. My husband forgets to take his pills sometimes for a few hours. He has asked me to remind him so that he does not have to take them just before he goes to bed. I will pray for you and yours. Good luck, Susan. Gbratcher@kc.rr.com


Kat R, September 5, 2001 - Hi, Just to update you on my fella: He found out that the artery on the back of his heart closed off. He had bypass about 12 years ago and they did 3 or 4 then. They prepped him for possible emergency surgery last night. This morning I called the hospital and they informed me that he was now in CICU, which is an indication that he truly did have some kind of surgery. The surgeon said the artery that closed off was the one that helped him breathe. I am not sure what all this means. Does anyone have a clue as to what might be going on? We live in different cities so I cannot be there with him at the present. I sure could use some support and some answers. Has anyone else had a loved one go through something like this? Does anyone know what I can expect for a lifestyle for him after all of this? I cannot talk to the surgeon to get the answers. Thanks, Kat R. krohrer@jacobsmarketing.com


Roy, September 7, 2001 - Hi everyone, My mum has been diagnosed with CHF. The doctors have classed it as "very serious." We live in England. None of the nurses, doctors, consultants or specialists have mentioned anything about the importance of her restricting her salt intake. I only know why it's so important because of the info provided on this site (thank you, Jon). I've convinced her to cut down her intake but not drastically.
     Since coming out of hospital, her weight has fluctuated. She gains a couple of pounds, then loses a couple, but generally it's risen. Do you think this could be the beginnings of fluid build-up again or is this natural because home cooking is tastier then hospital food? I am starting to get a bit concerned but I don't want to worry her unnecessarily. I read somewhere that daily allowance should be 4 grams. How could I measure this from all the different foods she eats? Any advice would be gratefully appreciated. Thanks for listening, and peace and best wishes to all, Roy. roy_karia@hotmail.com


Suzy Coulter's September 7 reply to Kat R's September 5, 2001 - Hi to all, Blessings and peace to you. I also read this site every day, every word. Kat, our situation is a little different but I have watched my husband survive lung cancer when he was told it was hopeless. I have watched him come from class 3 CHF with a 24% EF all the way back. He now has COPD with one remaining lung very diseased. He uses oxygen 24/7 but the last couple of weeks keeps walking around without it, and is still breathing okay. A great deal of our healing power is within ourselves. Tell your fella to stay positive, lots of people are praying for him. Thanks again Jon, for this site. I am greatly encouraged and enriched by your special ministry, Suzy. sskbc@optonline.net


Wendy's September 7 reply to Tia's September 4, 2001 - Hi Tia, I e-mailed you separately and I hope to hear from you. God bless, Wendy. Pittfarm@aol.com


Carolyn N, September 7, 2001 - Hi, I don't really know where to begin. Two days ago my mom went into the hospital and it was the first I had heard of CHF. I am still in the process of going over all the incredible information on this site. However, the more I read, the more scared I get. Anyway, I wanted to thank Jon for this site so that we have a place to go. :-) in1978@aol.com


Davida S' September 8 reply to Roy's September 7, 2001 - Hi Roy, If the doctor classified your mum as serious, throw away the salt shaker. Any weight fluctuation should be a concern in heart failure patients, especially if you see a 2 pound or more gain in a day or so. Her heart is in recovery and unless it regains strength, it doesn't need to be overworking due to fluid retention from salt. Salt and heart failure is a bad, bad combination. Her goal is no salt to minimum salt for now.
     Read labels! Try and have no salt meals such as boiled eggs and juice for breakfast, or oatmeal. Everything that is bought in a can or box needs to be checked for sodium (salt) content. The daily salt intake maximum for CHF patients is 2 grams (2000 mg). When cooking at home, add no salt and use "No Salt Added" canned veggies or fresh or frozen. Search this site for posts that include low-salt suggestions.
     Here in America, CHF patients are told to call their doctor if they gain a couple of pounds over a one to two day period. The goal is to weigh at the same time in the same clothes (none) every day. My husband was so obsessed with his weight that he weighed day and night for almost 6 months. Keep a journal of daily weights and food intake if possible. My husband did this and noticed certain gains with certain foods when we ate out. Once again, aim for no salt to low salt with each meal. It is possible. Take care. cavalier_1@msn.com


Karen D's September 8 reply to Roy's September 7, 2001 - Hi Roy, I'm glad to hear that your mom has been released from the hospital and is at home now. However, most CHF patients are restricted to no more than 2 grams (2000 mg) of sodium per day, and are also restricted to no more than 2 liters of fluid per day. You are are right to be concerned that her weight gain may possibly be from fluid build-up.
     In the USA, all foods that we purchase (with the exception of fresh fruits and vegetables) have a nutrition label, listing the amount of sodium, fat, cholesterol, etc,..., in each serving. The label also tells you how many servings are contained in the box or can. For example, a can of Campbell's Condensed Cream of Mushroom soup contains about 2 1/2 servings, and each serving contains almost 900mg of sodium (almost half the daily allowance for a CHF patient). So my husband does not eat any canned soups anymore.
     Once you know how much sodium is in the raw ingredients, you can keep a chart of the total amount of sodium your mom has had. It sounds hard but really isn't, once you do it for a couple of weeks.
     If the UK does not have such a labeling system, there may be books available through your library or even through the doctor's office or hospital nutritionist. I bought a little booklet that listed a lot of common foods and the amount of fat, cholesterol, and sodium in each one. That has been a terrific help, since even unprocessed foods can contain sodium. I also thought that I had seen something on this site setting out sodium content of foods - but I can't find it now. Maybe Jon will post it for you (Jon - see the link you just passed). Good luck to you and your mom. bdeit@cfl.rr.com


Carolyn N, September 8, 2001 - Hi, Does anyone have any suggestions about exercise? How does one exercise without overstraining the heart? Thanks! in1978@aol.com


Karen D, September 8, 2001 - Thanks Jon, for the link to the sodium content of foods. I knew I had seen it here, but for some reason just couldn't find it again. Now I've bookmarked it. I know it will be helpful to Roy and his mom, Karen. bdeit@cfl.rr.com


Susan B's September 10 reply to Roy's September 7, 2001 - Dear Roy, It may be useful to you and your mum to have the weight chart from the heartfailureonline web site. My husband has the chart hanging up on the back of his bathroom door. The chart has a place to list the weight and notes. This way you can watch for weight gain over 2 or 3 days. It is difficult for my husband to remember just what his weight is from day to day. This chart allows him to keep one less piece of information in his head. It sounds like you are doing a great job learning about CHF! I am so glad that you have been able to take some time to gain the information you need to know to help your mum. I will keep you and your mum in my prayers, Susan. gbratcher@kc.rr.com


Susan B's September 10 reply to Carolyn N's September 8, 2001 - Dear Carolyn, Have you asked the doctor about rehab for your mom? It is wonderful. I was surprised at what a difference it made for my husband. I had to ask several times for cardiac rehab before the doctors sent him. I also suggest calling your mom's insurance company to see what rehab they pay for. Our insurance company has assigned a nurse to supervise my husband's care because of his condition. The nurse has been very helpful, which was a big surprise to me. She has suggested other things that might be helpful to us as well, such as suggesting that the doctor prescribe a blood pressure machine so that they could pay for it.
     I agree with you that Jon's site is a Godsend. I would have been lost without it myself. Again, thank you Jon, for this site. The service you are providing is so valuable to so many people. I give the web site out at least once a day to my clients, friends, and even people in line at stores. Carolyn, I will keep you and your mom in my prayers, Susan. gbratcher@kc.rr.com


David H, September 10, 2001 - Hi, My wife was diagnosed with peripartum cardiomyopathy or PPCM, in March of this year. I have been told about a site that deals with this specifically but have been unable to find it. Any help would be great. For others in the same boat, I submit the following.
     The day she went to the ER for shortness of breath, the ER doc was on top of things. He recognized that she was in serious need of immediate care after one look at her chest x-rays. A cardiologist was brought in and ran several tests, which showed an EF of about 10% the day she was admitted. After a 4-day stay in the cardiac unit, she was released with several meds that I can hardly keep up with, including Altace, Lasix, and digoxin. Now 6 months later, she has an EF of 25% and is able to carry our 8 month old daughter around. She is also able to play games with our 6 year old son, and is on the slow, uphill road to as close to full recovery as can found. drunkbuster00@aol.com
 
Jon's note: Try these links


Kat R, September 10, 2001 - Hi, My fella called from the hospital last Tuesday night. As I have said, his artery blocked off, the one that helps with breathing. Something happened Tuesday night, I don't know what. I don't know if he has had surgery or if he has taken a downward turn. Not being immediate family, I have no right to know. I called this morning (Monday) and he is still in cardiac ICU.
     Has anyone else dealt with someone being in ICU for almost a week? Does anyone have any possibilities as to what may be going on? The nurse in cardiac ICU did say Saturday that he may be there for a few days yet. Could something drastic have gone wrong? Could he have had surgery and it was longer and more complicated than expected? Could he be dying? I am at my wit's end not knowing. Everyone says be patient, but that is hard. Any ideas? Thanks, Kat. krohrer@jacobsmarketing.com


Carolyn N, September 10, 2001 - Hi, Thanks to everyone for their suggestions. We will definitely look into cardiac rehab therapy and have already put a call in to my mother's doctor. I had my parents read The Manual, which was very helpful. I was also reading the heart material which is on www.spotlighthealth.com and was wondering what you all thought of it. in1978@aol.com


Ben B's September 11 reply to Carolyn N's September 10, 2001 - Hi, I see the five year nonsense statistic is featured prominently on the spotlight web site, leading me to completely question its value in anything else. I'd stick around here and forget that. I doubt you'll find any better, more complete, or more accurate information anywhere. In my initial diagnosis obsession, I looked everywhere. bdbrinkman@juno.com


Roseanne S' September 11 reply to Kat R's September 10, 2001 - Hi Kat, Being in ICU for a week does not mean your fella is dying. There are lots of reasons he could be in ICU that long. Until you can visit and get some information from him, you just won't know. You have to take it one day at a time. Sometimes progress is measured in baby steps. My husband was in ICU for 8 days following his heart attack. He was in ICU for 15 days the first time he had CHF. Currently we are into our 14th week of hospitalization. He was in ICU for 12 weeks this time (total of 3 hospitals): seven weeks before getting a Heartmate LVAD and 5 weeks after. He is still in a critical care unit after almost 3 weeks. We are hoping to go home next week to wait for a heart. We still have to to CPR and 3 outings before they will let us leave. Anyway Kat, you will not do yourself or your fella any good by getting upset before you have all the information. Prayers, Roseanne. rschurick@seidata.com


Davida S, September 12, 2001 - Hi everyone, I have a tip for salad dressing users that may help, since most of us like a heaping amount of dressing and it is loaded with salt. What I did for my husband was to take the standard serving and add olive oil (which is heart smart) or a flavored vinegar which has no salt. I mix everything in a small glass or shake it in a large med bottle. The olive oil made no significant difference in taste. cavalier_1@msn.com


Kat R, September 13, 2001 - Hi, Just a quick note to thank everyone for the hope-filled messages. I finally heard from my fella. He had emergency quadruple bypass the day after Labor Day. He says he is feeling great but still has a lot of tubes. I don't know how long he will be in the hospital yet but it must have been a little on the serious side. Thanks again for all the support and encouraging words; They have helped a lot, Kat. krohrer@jacobsmarketing.com


Kat R, September 14, 2001 - Hi, Just another update. I talked to my fella last night. He is doing well after the bypass but is coming along very slowly. He was told that he almost died after the surgery and it was a rough few days. All the tubes are now out and today is another big day. Today they are inserting a pacemaker/defibrillator. I know that this is fairly routine but it is still a worry considering all that has happened. He said the doctor said that the bypass and device are all that he can do. I'm not sure what he means but I am making a positive of it for now. Hopefully, he means that this is all that needs to be done medically and that the rest (diet, exercise, etc,...) are up to him. Again, thanks for all the thoughts and prayers, Kat. krohrer@jacobsmarketing.com


Roy, September 14, 2001 - Hi, I just wanted to say a sincere big thank you for the responses to my question. Wishing you all peace and good health. roy_karia@hotmail.com

Jon, September 29, 2001 - Yoo hoo, Is anyone out there? <g> 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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