The paperwork never ends The Archives
Loved Ones - September, 2002 Archive Index

Donna H's 9-2 reply to Michelle's 8-30     it can sure be a whirlwind & more
Sandra's 9-2 reply to Michelle's 8-30     coping, questions
Yvonne 9-2     seek CHF death watch experiences
Jane 9-3     really need some ideas
Jon's 9-3 reply to Jane's 9-3     about the pinched nerve
Michelle's 9-3 reply to Sandra's 9-2     thanks, ICDs, changed lives & more
Sandy's 9-3 reply to Jane's 9-3     I would call his doc now & more
Donna H's 9-5 reply to Jane's 9-3     alternative therapy for pinched nerve
Carol 9-5     how do you cope with this behavior?
Vonda 9-6     update, sore muscles concern me
Jon's 9-6 reply to Vonda's 9-6     sore muscle possibilities
Annie G's 9-6 reply to Carol's 9-5     we can't do it for them
Roseanne S' 9-6 reply to Carol's 9-5     we can't do it for them
Susan B's 9-6 reply to Carol's 9-5     we can't do it for them
Sheryl's 9-7 reply to Carol's 9-5     low sodium diet
Kelly S 9-7     Larry had a seizure
Kelly S' 9-7 reply to Carol's 9-5     coping with being the loved one
Carol 9-9     update, thanks & more
Lisa Z 9-9     thank you
Deb F 9-9     I could sure use some advice and support, venting too
Donna H's 9-10 reply to Deb F's 9-9     coping & more
Carole K 9-10     update, prayer request
Jon's 9-10 reply to Carole K's 9-10     prayer requests & more
Anne 9-11     update, you must have a CHF doc & more
Kelly S' 9-11 reply to Carole K's 9-10     prayers for you
Kelly S' 9-11 reply to Deb F's 9-9     prayers, coping & best wishes
Kelly S' 9-12 reply to Anne's 9-11     prayers coming your way
Kelly S 9-12     Men!
Carol S' 9-13 reply to Anne's 9-11     intro, husbands with heart failure
Carol S' 9-13 reply to Kelly's 9-12     husbands, memory question
Carol S 9-13     creatinine question
Carol S 9-13     my prayers for all
Donna H's 9-16 reply to Carol S' 9-13     husbands!
Joe 9-16     appreciate my care giver
Deb F 9-16     thanks, update & more
Carol's 9-17 reply to Donna H's 9-16     just gotta keep praying
Walter K's 9-19 reply to Carol's 9-17     sodium versus salt
Judy H 9-19     Aldactone and potassium level question
Lisa Z 9-19     to all who take blood thinners
Irene 9-20     my dad died
Susan B's 9-21 reply to Irene's 9-20     condolences, prayers & more
Kelly S' 9-21 reply to Carole S' 9-13     hubbies and meds
Kelly S' 9-21 reply to Donna H's 9-13     hubbies
Kelly S' 9-21 reply to Joe's 9-16     a little goes a long way
Kelly S' 9-21 reply to Deb F's 9-16     that's good news, best wishes
Kelly S' 9-21 reply to Carol's 9-17     salt cravings
Kelly S' 9-21 reply to Lisa Z's 9-19     hoping for a recovery
Kelly S' 9-21 reply to Irene's 9-20     condolences & more
Kelly S 9-21     request prayers for Judy
Kelly S 9-21     thanks for this board
Roger Hughs 9-21     prayers on the way
Ginny 9-23     seek heart recipients
Jon's 9-23 reply to Ginny's 9-23     seeking heart recipients
Lisa Z's 9-23 reply to Irene's 9-20     sincere condolences
Lisa Z 9-23     update on my dad and more
Susan B's 9-24 reply to Lisa Z's 9-23     we all need some help
Irene 9-25     thank you all
Kelly S' 9-25 reply to Lisa Z's 9-23     hoping things get better & more
Lisa 9-25     seek personal experiences for study & to Jon
Jon's 9-25 reply to Lisa's 9-25     content use policy & end-stage CHF issues
Lisa Z's 9-25 reply to Susan B's 9-24     coping
Carole K's 9-25 reply to Jon's 9-25     end-stage disease care
Lois B 9-25     end-stage disease care
Jon's 9-25 reply to Lois B's 9-25     end-stage disease care
Suzy C 9-25     update, CHF affecting the mind & more
Annie G's 9-25 reply to Lisa L's 9-25     education is critical & more
Susan B's 9-25 reply to Lisa Z's 9-25     delegating helps, education helps & more
Christine F 9-25     gotta vent - not good news
Nancy Anand 9-28     can his heart size improve even more?
Jennifer 9-28     sulfur and diuretics - need help
Donna H 9-28     update, docs, prayers & more
Judy 9-28     end-stage CHF experience

Donna's September 2 reply to Michelle's August 30, 2002 - Hi, I understand how you feel Michelle, because I often feel the same way. My husband was diagnosed 2 years ago and we thought that once we knew what was wrong, it could be "fixed" and we could go back to our regular lives. Since that time he has had 4 hospitalizations, too many emergency room visits to count, and an ICD put in last month. Just like you said, things just get settled down and something else happens and we are in a whirl again. Sometimes I cope with it better than other times.
     We thought the ICD was going to fix it all, yet he went into heart failure again last Monday and we spent the night in the emergency room. I went to work the next day, like I am sure you have many times, wondering and worrying how he was going to manage. He is slowly improving since then but because of another increase in Coreg, is feeling tired and bad.
     It is very hard for our friends to understand that he can look fine one day and then suddenly go into failure. Since they can't understand, it is difficult to talk to them about his illness and it is wonderful to be able to come here and know that other people understand.
     Our lives will never be the same but in some ways they may be better, as his illness has forced us to communicate more and on a deeper level. Though my husband was 10 years older than yours when diagnosed, we too have a daughter at home. I hate that she has to face his illness but this is our life and we just do what we can to make it the best we can. Hang in there and good luck!

Sandra's September 2 reply to Michelle's August 30, 2002 - Oh Michelle, I know exactly what you are going through. My husband is 46 and was diagnosed with CHF in March. I have 3 teenagers and I understand how hard it is not to dwell on if your husband will get to see them graduate, marry, have children, etc.
     I also understand the need to be on guard for the next emergency, crisis, doctor visit. It begins to feel like being in a constant state of disaster preparation mode and it is exhausting. Just when I was beginning to feel I could cope with all of this and my husband seemed to be stable if not improving, we found out that he has all kinds of arrhythmia going on and is at high risk for cardiac arrest.
     After he was diagnosed with CHF, everyone thought I was being over anxious when I had a hard time letting him out of my sight for fear he would go down and I wouldn't be there. I know CPR, but I don't know if someone near him will know it if he goes into arrest away from me. You said your husband had an ICD put in, how is it working out? My husband's doctor is talking about that as a possible option. I hope and pray that things will improve for your husband and you. God bless you, both, Sandra.

Yvonne, September 2, 2002 - Hello All, My father died in March of congestive heart failure. The experience was incredibly painful for me and my family. We had hospice come in way too late and they were little help with understanding the dying process.
     I would like to know if any of you have watched a loved one die of congestive heart failure. What I really want to know is - did my father know what was happening to him? He seemed to be sleeping most of the time but I could wake him with some prodding. The last 3 days he didn't seem to be conscious, but I just wonder how much he was aware of.
     It is agonizing to me to think that he suffered. I tried my best to make his final days comfortable. I just know that if he heard the gurgling when he breathed, it must have scared him. Anyway, I don't want to upset anyone here. I just wondered if anyone had any knowledge about this. Thanks, Yvonne.

Jane, September 3, 2002 - Hi to all caregivers and hugs as well, My husband has had 3 cardiac events, 3 angioplasties, 3 stents implanted, the last one on August 6. It all started at the end of January of this year. Last week his employer gave him the axe and all weekend he's spent holed up in our bedroom. He's had a pinched nerve in his shoulder since before the last event and the pain is controlling him. He can't have an MRI and they're treating him with head meds, oxycontin, I think.
     Since he's only 46 and both our children are at home, his current depressed state has me extremely worried. I will call his doctor but I'm not exactly sure that's the right move. His mother died of CHF at age 50 and I'm worried that he may have suicidal ideations. I'm a spry 42 with no health ailments (knock on wood) but I'm scared and feel like there's nowhere to turn. Any direction anyone can give will be most appreciated.

Jon's September 3 reply to Jane's September 3, 2002 - Hi Jane, I am not a caregiver so I will leave the advice to others. However, pain wears a person down. I know because I had an injury from working in a lumber mill that laid me up for 10 straight months and kept me in pain longer than that. About the pinched nerve, has he seen a chiropractor who uses only manipulation? My chiropractor saved me a great deal of pain and kept my need for pain meds way down.
     MDs often have very little grasp of musculoskeletal problems unless something is torn clear in half. They almost never actually treat a non-tear problem - they only treat the symptom - pain. That never gets rid of the actual cause of the pain. I would suggest he seek more opinions on the shoulder problem first. Improvement in pain and no need for pain meds can only help his attitude. Jon.

Michelle's September 3 reply to Sandra's September 2, 2002 - Hi, Thank you to everyone that responded to me. It's great to know there are so many people out there who care and who can relate to what you're going through. I do agree with Sandra that it makes you communicate at a deeper level. I feel like we've really drawn closer to each other and have stopped the petty squabbling. We don't want a quarrel to be our last memory together and things that used to seem like such a big deal just don't matter anymore in the scheme of things.
     It's been a big relief for both of us to have the ICD. I feel like it's one less thing to worry about. His defibrillator has never gone off, but it's great to know that it will if he needs it to. The recovery time was pretty good. Bill had his put in on a Friday, spent the night in the ICU as a precaution, and was able to leave the hospital on Sunday afternoon.
     Bill is going to be having a biventricular pacemaker put in on September 17th. They will be putting in a 3 in 1 unit. We're hoping that it will improve his quality of life.

Sandy's September 3 reply to Jane's September 3, 2002 - Hi Jane, Is your hubby on an antidepressant? If you think he may be suicidal, the question is not whether to call your doc or not, that answer is yes! If the question is when to call the doc, the answer is now! It does not matter if it is after hours or on a weekend, call now! He is crying out for help, and your call to the doc may be his only help!
     It is not easy being the spouse in these times, but we all promised to be there in sickness and in health. In this time of sickness, you must act so that you can again enjoy some of the joys of the "health" part! Please call his doc with your concerns. My hubby takes 20mg Paxil once per day, not because he wants to, but because I talked to the doc and told him that he needs it. It works wonders for him. Sandy.

Donna H's September 5 reply to Jane's September 3, 2002 - Hi Jane, I don't know how willing your husband would be to try an alternative, but my husband has had extremely good luck with acupuncture for a pinched nerve. He was in an accident and was told by several MDs that pain meds and surgery were his only recourse. Someone recommended acupuncture and after 5 years of pain, he was pain-free. He also believes that acupuncture helps his mental state.

Carol, September 5, 2002 - Hi, My husband John was first diagnosed with CHF a day before his triple bypass in February of 1997. Since then he has had mostly just swollen ankles but in the last year or so, he has had a couple of nights unable to breathe.
     Last week though, he went to the emergency room at the hospital for treatment. It was not a really bad bout, but I think it is time to realize finally how serious this is. The problem is that he is determined to do it "his way" and that means cutting down, not cutting out, the salt. He says he will stop using sodium-loaded commercial products, but he must have salt on his food or it won't taste good.
     How can I deal with this? We are arguing all the time because he thinks I am trying to run his life. John had his first heart attack in 1989 shortly after being diagnosed as a type II diabetic. He is 66 years old. How do you cope? Carol.

Vonda, September 6, 2002 - Hi, I have a question. My mom has been doing really good for 3 weeks, cooking, shopping, and doing a little housework. She even drove for the first time in months. However, for the past few days she has complained about being sore all over. Is this a symptom of CHF? I called the clinic to be on the safe side but the nurse practioner says the antibiotic that she has been on for bronchitis could have caused this. We are due to go back next week, but I am a very nervous daughter who worries a lot. Should I take her on in? Thanks, Vonda.

Jon's September 6 reply to Vonda's September 6, 2002 - Hi Vonda, If she takes a cholesterol-lowering drug, take her to the doctor's immediately. There is a dangerous but very rare side effect of statin drugs like Zocor that affects the muscles. If she is not on a cholesterol-lowering drug but takes Coreg, that could be the culprit. Of course, don't forget that becoming active after a period of no activity can also just make the muscles sore from unaccustomed use. ;-) Jon.

Annie G's September 6 reply to Carol's September 5, 2002 - Hi Carol, How do you cope? I keep reassuring myself. You can't make him eat properly; you can provide him with the information or make sure he has the clear information available. He needs to understand why the low sodium diet is so important. He also needs to know that after a while food will taste good again but he is right, it'll taste like cardboard until he gets rid of his "salt tooth" (kind of like the sweet tooth some of us have). Get rid of all high sodium products, cook low sodium, and then if he still heavily salts his food, keep quiet.
     It's not easy to do. We can't save our loved ones, they have to want to save themselves. We don't want to become the police or wardens. We need to remain their support system, not their jailers. They will make their own choices and sometimes if they think it is a choice and not a command, they will sometimes make the right decision; not always though, mine went back to smoking! However, I don't harp or wring my hands. I can't make him quit or quit for him. I mention that should he need a heart transplant, they won't give it to him if he still smokes and I'd rather not be a widow, and then I let the matter drop. I try to mention it about every 4 to 5 months once only. However, we don't fight about it because he's an adult. Good luck. You can't do it for him, and it's not your fault. Annie. annieg129@cogeco.caw

Roseanne S' September 6 reply to Carol's September 5, 2002 - Hi Carol, First you close your eyes, take a deep breath, and accept that your husband is going to do it his way. There is nothing you can do to change that. If he feels bad enough, makes enough trips to the ER, has a bad CHF epsoide, decides he wants to live more than he wants salt, he might decide to cut it out. You are wasting your time, energy, and breath arguing with him.
     My best advice to you is to find a safe place to vent. Don't buy anything sodium-loaded. If he wants to eat it, make him buy it. I threw out the salt shaker, buy no salt, and season nothing I cook. If my husband wants salt added, he is going to have to go to the store himself and so far that has been too much effort. When my husband had to make changes to his diet, I made the changes to mine too.
     Pray a lot, turn it all over to God. It takes me a lot of tries to turn things over to God, but when I do I can feel the weight lift off my shoulders. Good luck, Roseanne.

Susan B's September 6 reply to Carol's September 5, 2002 - Dear Carol, I echo the other responses. You cannot do it for him. My husband does not want to give up the soda pop and I cannot get him to do it. I just bite my lips and try to support him as much as possible. He is doing everything else - walking, taking his meds, weighing with a chart every morning, and cutting down on the other salt. George drinks about 62 oz of pop a day, and he has not been able to give it up. I try to pat him on the back for everything that he is doing on-program.
     Hopefully, your husband has things that he is doing correctly. Maybe you can reinforce those changes and that may encourage him to make other changes too. However, life is too short to spend much time becoming the salt police. Good luck and my prayers to all, Susan B.

Sheryl's September 7 reply to Carol's September 5, 2002 - Hi, As the one who has the CHF, I can understand your husband's cravings for salt. The salt was harder for me to give up than my cigs. The taste of food without salt does improve with time but there are certain foods that need salt, so avoid them, like potatoes and pasta. Try a baked sweet potato with pepper and nutmeg. There are lots of low sodium recipes available online. Try them!
     Learn to cook using more spices. Use a lot of lemon and tarragon. Hot spices also work well. Serve food with strong flavors. Food really does taste like cardboard for awhile. Some meds make food taste funny also, so explore that. Good luck ladies! Sheryl.

Kelly S, September 7, 2002 - Hi, This has been a stressful week! We went out to eat Thursday evening and Larry had an episode at the restaurant. We were halfway through the meal. He said he was tired and then his hands started to tremor and he slumped to his left side. I couldn't get him to respond. I had the restaurant call 911. By the time the pump arrived he'd come around and refused to go to the hospital. One of the firemen informed him that he'd had some sort of seizure.
     He didn't want me to call his doctor but I did anyway. They wanted him in Friday to have a monitor placed and take some blood work. She said it could've been a TIA or possibly an arrhythymia. Needless to say, he's mad at me but so be it. I am hoping that the monitor and blood work will give us some insight into what might have caused this. This is the second time this has happened. Here's hoping all of you are having a great weekend and I'll post more when I know.

Kelly S' September 7 reply to Carol's September 5, 2002 - Hi Carol, My husband was a lot younger when he was diagnosed, but has struggled with a lot of the same things your husband is going through. Larry did the same thing. He's come to the realization that he feels better when he eats right and takes his meds as directed. We can't force them to do the right thing, they have to want to.
     I've got great family and friends who allow me to vent quite frequently. I also have my cross stitch, which is a great way to relax and enjoy myself, also allowing me to be creative. I've learned to enjoy the good days. Try to work through the bad ones and make the most of every one. Keeping you in my prayers and thoughts.

Carol, September 9, 2002 - Hi, Thank you all for your good advice and encouragement. It really helps to have a place like this to vent. I guess I have a tendency to want to control John's behaviour, and I see I cannot. Unfortunately, he is the grocery shopper and the cook, since he is retired and I am not. That makes it harder to stop having salt in the house.
     There is some good news, though. He seems to react more to commercial products than the salt itself, and he is willing to give those a pass. He is also talking about making more homemade things like bread, muffins, etc. Although butter isn't the best for him, his cholesterol is in better shape than mine so we compromised on unsalted butter for him instead of margarine with sodium in it. Thanks again to everyone for the advice and prayers. At least I don't feel so alone in trying to cope. Carol.
Jon's note: Interesting note - professional chefs use unsalted butter

Lisa Z, September 9, 2002 - Hi Jon, I just want to thank you, My dad got a "surprise" shipment of Coenzyme Q10 in the mail and was just tickled. He spent half the day trying to figure out how he got it, before I had a chance to tell him! Please thank your reader for us too - we are most appreciative. My mom will be sending him a little thank-you card. I just wanted to say thanks to you. I hope you are feeling well and having a great day!

Deb F, September 9, 2002 - Hi, We had a bad day today. This is my second post, the first being when my mom, who has CHF, was starting EECP treatments. Well, that was 4 weeks ago. Today she was starting over with treatment one, and after 34 minutes had wet sounds and congestion was starting. She is not going to be able to take the EECP due to her congestion; it's too risky.
     The past month has been bad. I feel like she's pedaling downhill backwards and will never be better again. I guess I'm going to vent here. Read on if you want.
     Her first heart attack happened in August of 1993. She was also found out to be a type II diabetic. She is now 65 years old. She's had at least 10 heart attacks, a double bypass, a valve replacement 5 years ago due to endocarditis, several stents, multiple angioplasties, has a pacemaker, angina, CHF, and numerous nonrelated heart problems such as internal bleeding and GERD.
     This past month has been rough. She started EECP August 13th for angina. She had 3 treatments and by Friday had congestion and heart pain, which led to admission to the hospital. She was 16 days in the hospital for the water on her lungs and then also had internal bleeding with blood transfusions, which also put her in CHF. She has had several scopes and they cauterize and she has good a few days, but then her stools are black again. She needs sugery but her heart can't tolerate surgery. She was last in the ER Friday and with Lasix and some other meds improved and went home.
     Today after 34 minutes of EECP she had congestion, her oxygen levels dropped to 89 and it was decided that she was too sick for the treatments. We met with one of her cardiologists and she's on 2 Lasix pills twice a day for the next few days along with a half pill of something else, plus triple dose potassium. Thursday she will see the cardiologist again and have her potassium and hemoglobin checked and see how her swelling and congestion is doing.
     She is so tired of this, it's been almost 10 years. Her father died of CHF years ago and it seems like this may be getting close for her. I feel badly for her. She is depressed and worn out. Spending 9 hours on the road and the heart institute today wore her out. Have any of you wished it would end?
     I believe God only gives us what we can handle, but her load is getting very heavy. I try to get to doctor visits when I can, to help her out. My dad is 11 years older with emphysema, so he's no help. I also am married with 2 teens. I feel guilty for wishing my kids would have been older before my parents health changed, because I'm not as available due to helping my folks out. I'll probably be dealing with funeral and graduation this year. Help!
     How do you all handle the stresses? I know that people don't realize how my day can change abruptly. I don't like to make too many plans because I don't know when she'll be in the hospital next.
     Thanks for letting me vent. I will now starting checking into this web site often to see if I can help someone else out or to catch some advice and words of wisdom. I read back a few posts and know I am not alone here. Thanks in advance and feel free to e-mail me. I really need to talk with someone going through this like me. Thanks, Deb.

Donna H's September 10 reply to Deb F's September 9, 2002 - Hi Deb, I went through much of the same thing when my mother was hospitalized 7 years ago. I had a high school senior as well as a grade school child. I am self-employed so when I had to close my office I had no income, so I would work a day or two then go back and forth to the hospital. It left little time for my family and I was often overwhelmed with guilt. Then one day a dear friend sat me down and told me that I was teaching my children life lessons that would prove invaluable as they grew older. They saw that when someone you love is ill you do what you can to take care of them.
     I think they have learned those lessons well as now we are going through my husbands CHF and my youngest is now a Senior. She has seen me be with her father through his many hospitalizations the last two years and she knows that this is all part of life. It isn't easy but we manage because we have no other choice.
     Both my husband and I had an acupuncture treatment last night and the stress relief is unbelieveable. It was the first time I have tried it but I know I will go back again!

Carole K, September 10, 2002 - Hello All, Here's an update on my mother (not good). I will be meeting with hospice this afternoon. According to her doctor and I quote, "Her last echo was just terrible." We talked about hospice and he thought the time had come, and then we talked about mother as his patient for many years and then he left the room with tears in his eyes. I don't want to offend anyone but if you pray, please pray for my mother and me. Thanks.

Jon's September 10 reply to Carole K's September 10, 2002 - Hi Carole, Prayers you need, prayers you got. This heart forum and web site were built on prayer and you are always free to request them. Please keep us updated about your mom. Jon.

Anne, September 11, 2002 - Hi, I have been a lurker for a year or more. I haven't posted before but read the posts almost daily. My husband is currently in Club Med. I just wanted to pass on how very true it is to have a doc who knows how to treat CHF. We went to the ER Friday night and if my hubby agrees to go to the ER, he is in really bad shape.
     We happened to run into his CHF doc leaving as we were pulling up to the ER. He was headed home, but told us to tell the ER doc to admit my husband and start him on Primacor. After 4 hours of sitting and waiting, the ER doc came in and told us that his lungs were clear and his heart might be a little big, and he really didn't see any reason to admit him since he wasn't severe.
     Having learned from reading posts here over time, I repeated again what the CHF doc had said and got a bit pushy. The ER doc finally agreeded to call the cardiologist on call for the CHF doc, and low and behold, 4 days later he is still there. Jon, thanks for a wonderful site. It has provided much info, a reality that there are others out there in the same boat.

Kelly S' September 11 reply to Carole K's September 10, 2002 - Hi Carole K, My prayers go out to you and your mom. I'll be keeping you in my thoughts.

Kelly S' September 11 reply to Deb F's September 9, 2002 - Hi Deb, My prayers go out to you and your family. I also believe that God only gives us what we can handle. Sometimes it may feel like way more than that, but in the end we ususally find a way to cope. Here's hoping that your mom is able to resume her treatments soon.

Kelly S' September 12 reply to Anne's September 11, 2002 - Hi, Here's hoping your husband's doing better. Prayers and thoughts go out to you.

Kelly S, September 12, 2002 - Hi, My husband went to the CHF clinic yesterday to follow-up on his episode last Thursday. The monitor showed nothing, blood work shows his magnesium is a little low, but not low enough to have caused anything like this. Come to find out, he'd been out of his Lisinopril for a week and hadn't bothered to tell me! The nurse practitioner said when he restarted this medication it could've bottomed out his blood pressure. They've still referred him to a neurologist for a consult. So far no further attacks. Thanks for allowing me to vent.
Jon's note: Kick him in the shin once for me! <g>

Carole S' September 13 reply to Anne's September 11, 2002 - Hi, I am new to this forum and had a chuckle to see "Club Med." Every time my husband goes to the Ottawa Heart Institute, he tells the staff it is his favourite resort. I am so glad to have such a great place nearby for John. I can understand that it takes a lot to get these guys to go to the ER. While John was having his last heart attack, he thought he should just go get the car serviced first! I hope your hubby is home soon, and it's good to be a little pushy sometimes.

Carole S' September 13 reply to Kelly's September 12, 2002 - Hi, I don't understand men either. My husband John went to the hospital a couple of weeks ago with congestion. He had not been able to breathe all night. So, what did he do? He didn't take his Lasix the following morning, and didn't put on his nitro patch either! Usually he is so good about his meds. Does CHF also affect the memory or thinking process? I cannot understand what was going on in his mind. I hope your husband continues to be attack-free.

Carole S, September 13, 2002 - Hi, What is creatinine and what is the significance of the levels of creatinine? How does it affect the CHF patient? Any info?

Carole S, September 13, 2002 - Hi, This is my last post for now. I just wanted to send my prayers for everyone going through such tough times.

Donna H's September 13 reply to Carole S' September 13, 2002 - Hi Carole, When people are in heart failure, their brain isn't getting sufficient oxygen so they often have trouble thinking clearly. My husband knows that but it doesn't seem to matter, he still wants to make his own decisions and reasoning does no good.
     He had a pacemaker put in in August and they took him off most of his meds. They represcribed some, but not all, when he got out of the hospital. They increased his Coreg to 37.5mg from 25mg but didn't put him back on Lasix. We thought he had pneumonia because he was coughing blood so I took him to the emergency room. He refused to go to the nearest hospital so it meant a 3 1/2 hour drive. An hour from home, he insists we stop and eat dinner.
     I tried to reason with him but he wouldn't listen so after dinner we proceed to the hospital and find out he is failure. The doctor was upset with me for not making him go to the nearest emergency room and for not making him go in an ambulance. If your husband is like mine, you know why I didn't!
     Now he is dizzy and feeling faint and they suspect that a lead has pulled loose. He refuses to go to the hospital even though I called and made arrangements. I don't know what the answer is but it is frustrating to watch someone you love and be so helpless. Sorry this isn't much help, I just want you to know that other spouses are going through the same thing. I will keep you in my prayers.

Joe, September 16, 2002 - Hi, I want to state that those of us who have heart failure are very thankful of our caregivers. My wife has been beside me all the way and has been such a nurturing person. She makes the fight worth it.

Deb F, September 16, 2002 - Hi, Thanks for all the support received on this site and e-mails too. They really helped. I'm a little more rational and not feeling as low this weekend. Thanks, you all helped me out.
     My mom is feeling better day by day. She is finally taking a turn for the better and not the worst. She went to the cardiologist Thursday and her lungs were clear and her hemoglobin was up. She needs to keep taking double the Lasix for awhile. She's lost several pounds and commented last night that she saw veins in her ankles she hadn't seen for a long time. My prayers go out to all of you and your loved ones going through this. I hope you have a good week.

Carol's September 17 reply to Donna H's September 16, 2002 - Hi, Thanks for sharing. I suspect your husband and mine are very similar, and yes I can certainly see why you didn't (couldn't!) take him by ambulance. John is still being very stubborn about salt. He keeps saying he will leave the sodium alone but that he needs a little salt to keep his system in balance. I try to tell him it is the other way round, that a little sodium is needed but not the salt. His answer is always the same - that food needs it to taste the right way. I guess we just need to say a prayer and leave it to our Higher Power. Carol.

Walter K's September 19 reply to Carol's September 17, 2002 - Hi Carol, Your post suggests confusion about sodium and table salt. It is the sodium that is bad because it "clings" to water, thus causing fluid retention. Table salt (sodium chloride) is bad because it contains almost 40% sodium by weight. Your husband's comment that he "will leave sodium alone but needs a little salt" and yours that a "little sodium is needed but not the salt" are what makes me think there is confusion someplace. Since it is so high in sodium and is so common, salt is mentioned most when people discuss sodium restrictions, although the sodium content of any food counts towards total daily sodium intake.

Judy H, September 19, 2002 - Hi again, Has anyone had any experiences with high levels of potassium associated with using Aldactone (spironolactone)? My husband Bob had routine blood work done at the VA clinic Tuesday morning to establish a baseline record with them. That's where he gets his meds.
     Tuesday night we got a phone call to have Bob go immediately to a hospital to get his potassium checked because it's 7.1. We went to the ER, where it was checked again and Bob was give IV sodium chloride, insulin, glucose, and sodium bicarbonate to break the potassium down, which it does. He then got to go home after drinking some keyexolate or something.
     Bob follows up with his PCP on Wednesday and has more blood work done. The blood work shows no metabolic acidosis and no kidney failure but still a somewhat elevated level (6) of potassium. The doc thinks the Aldactone that Bob started on at the end of April may be the culprit so he's going to get blood tests daily if needed. Bob also has to stop taking the Aldactone, start taking his Lasix (40 mg a day), which he hasn't done in quite awhile because he's had no edema and no breathing problems, but he has had diarrhea on and off.
     His EF is 15%, he's got an ICD, and his valves are bad. This is our first experience with this, so I would appreciate any feedback anyone might have. Thanks again, Judy.

Lisa Z, September 19, 2002 - Hi, I have posted here before many times. I am sending this as a warning more than anything. Please, please, please, if you or your loved ones are taking a blood thinner, don't ever miss your dose! My dad has DCM, CHF, an ICD, and type II diabetes. He missed 3 days of his Coumadin (warfarin) over the weekend, and suffered a small stroke Monday. Now, he has a small bleed in his brain and will not be able to go back on a blood thinner at all, which puts him at an even greater risk for another stroke.
     It has been the most difficult thing to see, and could possibly have been avoided. I just wanted to share and ask all of you to keep my dad and my family in your prayers. It is a rough time and he had been doing so well. Now he is in Club Med ICU and will probably have some residual effects from this stroke forever. We just pray they can stop the bleeding and that he doesn't have another, bigger stroke. I am beyond strung out and am trying to stay as positive as possible - that's why I am here. Thank you, Jon.

Irene, September 20, 2002 - Dear Friends, I just wanted to say goodbye. Much to my sorrow, my caregiving role has ended. My beloved father died on September 6. He passed away in my home under hospice care, and I miss him so! The last days were really hard and I guess I'll always wonder if I made all the right decisions. I hope I will have peace about that someday. I know I was new to this board but it really helped to read your messages and to post questions as I struggled to help my father. Thanks to all of you. With love and best wishes, Irene.

Susan B's September 21 reply to Irene's September 20, 2002 - Dear Irene, I am sorry for your loss. Please come back and visit us. It will take time, but then one day you might feel up to visiting us again. It is clear that you are a very caring person. Your words may help someone else with their loved one. My prayers are with you and your family. Thank you for being here with us. I read these posts every day and it helps me get through the day. You are not alone and that is the best thing about the posts - we all have people praying and hoping for us and our loved ones. Jon, thank you for your hard work. Susan B.

Kelly S' September 21 reply to Carole S' September 13, 2002 - Hi, I think in my hubby's case it's just plain stubbornness! Two of his nurse practitioners gave him what for regarding his decisions. I don't think he'll be skipping his meds for quite awhile. Again, I think sometimes people that take meds daily for long periods of time just get plain tired of taking them and try to regulate their own regimen and sometimes this is foolish. A good rule of thumb is don't mess with your meds, but talk to your medical professionals.

Kelly S' September 21 reply to Donna H's September 13, 2002 - Hi Donna, Very well put, but remember you can't force another adult if they are of sound mind. Had Larry still been unresponsive when that ambulance showed up, he would've been enroute to the ER, but since he was alert and oriented he chose not to go. My prayers go out to you. I know it's hard dealing with a stubborn spouse.

Kelly S' September 21 reply to Joe's September 16, 2002 - Hi, Sometimes this is just what is needed. A simple thank you and a hug does wonders on my end. :-)

Kelly S' September 21 reply to Deb F's September 16, 2002 - Hi, I'm glad to hear you mom's feeling better and hoping she continues to improve.

Kelly S' September 21 reply to Carol's September 17, 2002 - Hi Carol, We've tried several of the Mrs. Dash's and also have found some other herbs and spices. Larry still adds some salt to fries but doesn't have them very often. Maybe your husband could come up with a blend of spices and herbs to replace the salt. Good luck to you. I know this is a hard hurdle. I think part of it is that knowing you can't have something makes you want it all the more!

Kelly S' September 21 reply to Lisa Z's September 19, 2002 - Hi Lisa, I'm sending prayers your way. It is so sad that something as simple as following his medicine could've possibly prevented this. Here's hoping that your father recovers and is able to get back on his feet.

Kelly S' September 21 reply to Irene's September 20, 2002 - Hi, I am so very sorry about the loss of your father. It's never easy to lose a loved one, no matter how ill they've been. My prayers and thoughts go out to you. I'm sure your father appreciated all that you did for him. It sounds like he was lucky to have a daughter like you.

Kelly S, September 21, 2002 - Hi, A lady named Judy that I met through this board lost her husband Shorty on Thursday. I'm sure Judy would appreciate everyone's prayers during this time. I'm sure she'll miss Shorty greatly. Thanks.

Kelly S, September 21, 2002 - Hi Jon, I just wanted to again express my gratitude for this board. Once again today I've learned some new things and some days this board is what lifts my spirits and gives me renewed hope and energy to keep on keeping on. Here's hoping that everyone has a nice weekend.

Roger Hughs, September 21, 2002 - Hi Jon, You are in my prayers often and I know many will pray as you have asked. Thank you and may God continue to bless you.

Ginny, September 23, 2002 - Hi, Are there any heart transplant recipients spouses visiting this message board. My husband is 33 and received his heart in 12/00. I really could use someone to talk to about the problems we are facing.

Jon's September 23 reply to Ginny's September 23, 2002 - Hi Ginny, Don't foget to e-mail people who have received hearts at Me Too and the transplant section. Jon.

Lisa Z's September 23 reply to Irene's September 20, 2002 - Hi Irene, You have my deepest sympathy regarding the loss of your father. You seem to be very loving and I am sure that you did all that you could for him. It is heartbreaking to be a caregiver, and watch a loved one go through so much. My thoughts and prayers are with you.

Lisa Z, September 23, 2002 - Hi everyone, This is an update on my dad. He is still in the hospital and I am still requesting your good thoughts and prayers. It has been a long, difficult week, but he is improving slightly. Hopefully, he will not have any lasting physical effects from the stroke. He does, however, still have some bleeding on his brain, so he is being monitored very closely. The doctors tell us that the bleed is only the size of a pea. Does anyone out there have any experience with this kind of thing?
     He can't go back on a blood thinner because of the bleed, but he needs blood thinners to prevent another stroke, kind of a Catch 22. His confusion has lessened and he was actually able to get up and take a shower this morning. He is eating well and generally has pretty good spirits.
     I, on the other hand, am such a worrywart, and I am having a hard time. I am trying to be strong for him and for my mom (I have no brothers or sisters), but I am petrified that something else is going to happen. I love him so much and I am so close to him. I realize I can't control it, but I am still scared. I am also trying to do my job, take care of my dad's jewelry business, spend some time with my husband, and I am the chairwoman of a large event for homeless animals this coming Saturday! So, I guess I am kind of venting and here for support. Any good advice out there, let me know. Thanks.

Susan B's September 24 reply to Lisa Z's September 23, 2002 - Dear Lisa, You have my prayers. Of course you are afraid, that is normal. Hearing that it is normal helps me and I hope it does you too.
     Ask for help. I know this is hard to do. I am self-employed with over 700 clients. I was surprised at how many friends I have to help me when I need it. On my husband's bad days, I get help - I ask and it all works out. I just hired some more help and one of the people who is young and healthy keeps saying, "I don't know how you did it, all this work by yourself."
     I wasn't just by myself because I had help: First, God to listen to me; Second, friends and others helped me cover all the court dates (I'm a bankruptcy attorney). My husband's family and mine and our friends will be here to help with just a phone call. And here - this is some of the best help you could ever ask for. Thank you all and Jon, I would not be about to do my work without this place and the info you have shared with us. I never knew that there are so many people who cared about us. One of the good side effects of my husband's illness is that I get to see the good side of people in a different light.
     I started being honest with myself. I can't do it all. I must have support, so I went out and found out who I could count on. Different people are helpful at different things. I stopped feeling bad that I could not do it all. So, you might try to let yourself off the hook and see what help you have.
     You can plan for the worst and expect the best. Be sure that you ask questions and learn all you can about his condition and get to know his doctors. Only God knows what is next. You might want to take a step back and see just what you really need to be doing. We all have limits and we have to work within them. You sound like a very busy person, and a "do gooder." Great! You are likely to have some really good friends. You need to let them know what you need in the way of help and ask for it.
     I hope this helps. Good luck with it all. My prayers are with you, Susan.

Irene, September 25, 2002 - Hi, Hugs to all of you who posted notes or sent me condolence e-mails. They were a lot of comfort to me. I miss my daddy so very much! I am keeping you all in my prayers. Again, thank you very much! Best wishes to all of you, Irene.

Kelly S' September 25 reply to Lisa Z's September 23, 2002 - Hi, It sounds like you and Susan have a lot on your plates. I'm sending prayers both your ways and hoping you won't let things get too stressful. Make sure each day to do something for yourself, that's very important. Lisa, good luck with your event for homeless animals, it sounds like a great project. Susan, Being a bankruptcy lawyer is stressful enough! Here's hoping that things continue to improve for both of you.

Lisa, September 25, 2002 - Dear All, This is a slightly different kind of post. I am writing this as a health professional. Although I experienced the death of my own father from heart failure almost 5 years ago, my discovery of this site was for another reason. Having experienced this personal loss and caring for patients with CHF over the years, I have been studying towards a PhD to understand how patients with CHF and their caregivers can be better supported and whether the model of care for supporting patients with cancer (hospice, palliative care) would also be suitable for those with CHF.
     I have been collecting data in the form of interviews with patients and carers for over a year now and the analysis points to some interesting findings, some of which have been echoed on this site. My initial question is one of ethics and directed to Jon in the first instance. Can I quote some of your thoughts anonymously in support of my findings?
     Secondly, there seem to be so many of you who are willing and able to talk about your experiences, I wondered whether you might also like to share any thoughts more directly. All data that I collect is reported anonymously and in confidence. Although I am a cardiac nurse and would not be able to give any professional advice here, I can share my personal experiences of having lost a loved one to CHF. Thank you, Lisa, from London, UK.

Jon's September 25 reply to Lisa's September 25, 2002 - Hi Lisa, My corporate guidelines for content use are here. If you need more specific permissions, please e-mail me.
     As to palliative care for heart failure patients, I think this is an area where both patients and healthcare professionals frequently wander way off course. First, using cancer as a baseline, even unconsciously, is a wrong and weird attitude that is established like a religion in healthcare professionals' minds. Very unlike cancer, CHF treatment that relieves symptoms and improves quality of remaining life need not always shorten life span.
     In fact, many of the CHF treatments that improve life and comfort for CHFers also attack the disease process, resulting in possible improvement, rather than just making death comfortable. LVADs, aggressive drug treatment and pacemakers are all cases in point.
     The two goals - comfort and improvement - are not incompatible in many CHFers. Unfortunately, this obsession with cancer, especially in hospice, affects the way those of us without cancer are looked at and treated, possibly to our detriment.
     Inotropes may shorten life but almost every other treatment for end-stage CHF actually brings improvement if any improvement is possible in that individual. Even morphine is a potent venodilator and in those who truly cannot improve, may give anxiety relief, pain relief, and improved breathing all at once. Yet how many doctors use morphine in end-stage heart failure patients despite its obvious benefit?
     One big problem is that doctors refuse to commit themselves to a time frame for CHF patients. I don't know why since they do it for cancer patients even though they are usually wrong, according to the literature. This refusal to guess (which is all such a declaration is for any illness) denies heart failure patients hospice care completely in many cases. I'd like to get some doctors who won't commit on this in a closed room with me for a few minutes. I think they would leave that room ashamed.
     PS. A last initial really helps keep confusion to a minimum. See top of page. Jon.

Lisa Z's September 25 reply to Susan B's September 24, 2002 - Hi Susan, Thank you for your advice and kind words. I know that I cannot "do it all" and I do have a wonderful circle of friends that support me. It's weird but did you ever feel like they just won't watch as closely, ask as many questions, or take care of your loved one the same way? It's not that I don't trust them, I guess I am just too much of a perfectionist and that is why I try to do everything.
     I am trying to brace myself for the day I do lose my dad but I don't think you can ever totally prepare. Of course, that is the absolute last thing I want to happen and I am hoping for the very best, and am remaining as positive as possible. Even though I have a wonderful support system, I just don't feel as though anyone really understands how I feel - until I come to this board and commiserate and vent with all of you. I guess I have to get to that point where I don't feel so bad if I can't do it all.
     This place has been a total Godsend for me, eased many a fear, and raised questions that I may not have thought of otherwise. I truly appreciate people like you that take the time to share your experiences and advice with me. I am only 33 and am an only child. I have a full-time job as a Marketing Director for a community bank. I am also coming up on my sixth wedding anniversary and we have an 11 night cruise planned for the beginning of December. I want to go and need to go, but I am scared to go so far away.
     Of course, my parents say go - live your life - and quit worrying so much. However, twice now I am the one who has saved my father's life, once when he was in cardiac arrest and this last time with the stroke. Boy, I really started to ramble. Take care of you and your husband, and thanks again for caring and your prayers.
Jon's note: Rambling can sometimes be a good thing! ;-)

Carole K's September 25 reply to Jon's September 25, 2002 - Hi Jon, I totally agree with you. It took me weeks of trying to discuss with my mother's doctor to place her in hospice care. The first thing he said to me was that he didn't want her given morphine "just because her feet and legs were swollen." My answer was, "Why not?!" If it will help her!
     Mother is 87 years old with end-stage disease and her last echo was "terrible" according to her doctor. Pulmonary edema had become evident. So why not give her anything and everything possible to improve her quality of life?
     I must admit that since her admission into hospice care she looks better, her appetite and breathing have improved, and she is being monitored more closely than a once a month visit to the doctor. I can understand that eveything should be done to help CHFers, even aggressive measures if it will help, but I think hospice is the answer when the person you love is not a candidate for those measures.

Lois B, September 25, 2002 - Hi Jon, I do not understand why caregivers are not given more information about end-stage CHF. The more we understand, the easier it is for us to deal with it. We are on dobutamine along with Lasix infusion (IV) 4 days a week done by a nurse. We have reached the stage of head pressure whenever he walks or eats. Most of the time he sleeps in his lay-back chair. The defibrillator went off last week 3 times. It was atrial but the ER only kept him for 2 hours since there is nothing anyone can do. The stress is great, but one day at a time could be even easier if we had more information.

Jon's September 25 reply to Lois B's September 25, 2002 - Hi Lois, This is one of the top issues on the table at my meeting with the cardiology practice reps tomorrow - how I can get detailed and accurate information presented on a number of topics from medical professionals, with your topic near the top of the list. If we wind up working together, this will be answered by at least one web page for that topic alone.
     I have often wished a caregiver would start a web site devoted to care giving for CHF but it's Catch-22. You have to be a caregiver to make a good site about it and if you are one, you have no time and no energy to do so. Jon.

Suzy C, September 25, 2002 - Hi Everyone, I have not posted here for a long time, but read your notes very often. My husband is still in the quandary of heart versus lung. His continued inability to process air through his lungs and heart have weakened him, and his pulse oxygenation runs around 78 to 80 on O2. Much of the time his color is blue. His left leg is now permanently half again as large as his right leg. His feet and legs are always edematous, and his right eye is frequently swollen with fluid under it. He takes his Lasix regularly and it helps.
     In the past 6 months he has had an overnight sleep study, which he was unable to tolerate; a ventilation perfusion test which he was also unable to tolerate; a CAT scan of his lung which shows no signs of nodes or disease; a vascular doppler of his left leg which shows no clotting or vein obstruction; a cardiac echo which shows a normal heart with an EF of 50 to 65%. So even though we can't see anything, he is still very ill.
     He drinks his soda and eats whatever salt he wants. He still goes to work for a few hours a day, but has stopped going shopping. He can't tolerate standing or walking for more than a few minutes. With oxygen 24/7 he is always oxygen depleted. Last night he began to have some nosebleeds.
     Someone asked about whether CHF affected your mind. I say yes, as does the lack of oxygen. I find his memory is poor and his hearing is fading. I see my husband losing a little ground every day, after 8 years of CHF and COPD. On the upside, we find each day a gift. A new grandchild is coming next week! My prayers go out to all of you. Thank you again Jon, for this wonderful place to shout out loud about our frustrations and our joys. Suzy.

Annie G's September 25 reply to Lisa L's September 25, 2002 - Dear Lisa, I came to this site almost 4 years ago when my 46 year old husband developed DCM with an EF of 13% after one month of lack of treatment. My background was of a telemetry and ER nurse who dealt with CHF patients on a regular basis.
     I honestly believe that what CHF patients and their families really need is good solid education. I had thought myself fairly knowledgable, but I truly wasn't. I regularly encountered patients who didn't even know that one of their diagnoses was CHF. CHF patients were seen as repeaters who didn't really follow their diets or med regimes. When I spoke to them, they had no idea of the importance of their fluid restrictions or what really constituted a low sodium diet. Some didn't even realise that they should be on them.
     These patients were frequently seriously undertreated and undereducated by their cardiologists. The second thing people with CHF need is a CHF specialist and cardiologists don't often tell you to get one. This web site is the best thing that has happened to my husband and I. I know that the knowledge that I have gained from this excellent resource, Jon's time and effort, has improved and lengthened my husband's life. Thanks Jon.
     Good luck, Lisa. Don't miss some of the obvious improvements needed, like education and the time to educate. Annie G.
Jon's note: I rarely reply to such "praise" but believe me, I hear it, and it makes the effort much easier to face the next day.

Susan B's September 25 reply to Lisa Z's September 25, 2002 - Dear Lisa, When my husband was first sick, he was a little blue. I sent him to the doctor by himself. He told me that he was okay but might need some oxygen. When I talked to the nurse the next day, I discovered that his oxygen level was 81% walking. They also told me that he might just drop dead. Well, I asked, "Are you trying to tell me that he might just drop dead?" and they said, "Oh, we don't like to say things like that over the phone." I said, "You just did."
     I had to fight to get him on oxygen for 2 days; then I stopped working on my practice and worked on him. He is much better and does not need oxygen at this time. This summer, I had to miss one of my husband's doctor's appointments. My mother-in-law had to get notes to "pass the quiz." She knew that I need more information than she did and I ask a lot of questions. Thank goodness that we have Dr. Porter (yes, Jon's doctor) and he gives us notes.
     I worked hard to learn everything I can about CHF and it is even on my husband's chart that I read this site (so is that I am an attorney). I push to get all the information and I am by his side to watch out for him at the doctor's office. I watch him to see the little signs when he is not feeling good and he knows it and jokes about it.
     Of course you are good at watching over him, but you need to see what you can delegate - not everything, but a part. How many times has the caregiver been outlived by the person they were taking care of? You need to take care of yourself too and that means don't do it all. Try to delegate just one thing and it will help. Take your trip!
     Thank you everyone for your prayers, you all are in mine as well. As always thank you, Jon. Susan B.
Jon's note: Everybody keeps thanking me and my head will swell even more. My wife says that's unacceptable. <g>

Christine F, September 25, 2002 - Hi, Well, I don't really know how to start. Today I was dealt a big blow regarding my mom. She is 52 and had a heart attack one year ago this month, 3 weeks after the death of her husband of 17 years, my stepdad Gene, from CHF at 71. He previously had a heart attack and a triple bypass in 1982. He fought for 9 years, spending 8 hours a day 4 days a week as an outpatient on IV Primacor for 9 months; then 18 months at home on a Primacor pump 24 hours per day. He also had an ICD and pacemaker. Eventually, although he put up a courageous fight, he died a sudden death (thankfully) after a few weeks in hospice. While of course I'm very upset that he is no longer with us, I know he is no longer suffering.
     For the last 6 years my mom stayed at home with him as his full-time caregiver. She was thankful for the time she got to spend with him but was also very stressed out. She had her heart attack in Canada while visiting her mother, whom she hadn't seen in 2 years due to her inability to leave Gene. She ended up going to an ER in Vermont, where she was transported to Dartmouth Medical Center in New Hampshire.
     There she had a cath performed which showed 2 blockages. They were able to put in 2 stents to open her arteries back up. In October she was back here in Virginia. We made a trip to the ER about 4 weeks after her heart attack. They performed another to cath to make sure everything was still clear and it was; they were very impressed by the handiwork of the docs in New Hampshire.
     From then, mom made various trips to Canada and New York. Eventually she decided to make a try for the Big Apple to go live with my sister and refresh her computer skills. The idea was to get her life back on track after the death of my stepdad and health problems. Well, mom has finished her schooling and is back in town this week. Due to insurance reasons, she hasn't been able to set herself up with docs up north.
     She had a stress test last week since she had not been feeling too well. She had been breathless on exertion and tiring easily for the last month or so. The stress test showed a problem - where I don't know since I wasn't at the appointment. Today she had another cath, assuming she had another blockage. The "good news" was that everything was clear once again and her stents were fine.
     Unfortunately, her EF had fallen from 40 to 45% last October to 35 to 40% today. Also, the damaged area of her left ventricle has increased in size, meaning more dead tissue. The doctor pretty much bluntly said that she is in class 2 heart failure. Now in addition to the Coreg she was already on, he's starting her on Lasix and Zestril. He couldn't remember why they had stopped her ACE inhibitor last year - really helpful, huh?! We know she has a regular blood pressure of 110/70 and we think the ACE inhibitor made it too low.
     Now it seems that for every step forward, she takes 2 steps back. Being 52, she is supposed to have a good 20 years to enjoy her life. Now it seems she's following the path of her husband, with even the same cardiologists, nurses, and hospital. The doc told her he didn't know where she'd be in 5 years, better, the same or worse. Of course, she heard that as a death sentence. I am trying to encourage her and tell her that it's not the same as when Gene was sick.
     We all have questions: where should she live, can she even work, what will happen to her health insurance (they can deny her coverage up in New York), etc,...? It upsets me that she devoted herself so lovingly to her husband and still she is dealt more blows. I don't know what else to say right now. It's just all really confusing. The last thing we needed to hear was CHF today.
     I thank anyone who read this long-winded post. I really needed to vent this all out!

Nancy Anand, September 28, 2002 - Hi, My husband was diagnosed with cardiotoxic cardiomyopathy 3 years back and his EF was 14%. Since then his EF has really not improved. His last test was in November of 2001 but he has gained muscles and is back to working full-time. His heart size has shrunk (CAT scan results). He is on Coreg, digoxin (Lanoxin), and Lasix. Is there a chance of the heart size getting even better?

Jennifer, September 28, 2002 - Hi, I'm a caregiver for my mom (age 75) who was diagnosed 3 weeks ago with CHF. She has considerable swelling in her feet, ankles, and abdomen. She takes Diovan, Norvasc and nitro patches. She is not on diuretics because she is allergic to sulfonamides (or sulfur drugs). According to our research, pharmacists, and several docs, all diuretics have sulfur in them. Does anyone know of a case like this and/or a diuretic without sulfur? Any info would be helpful. Thanks!

Donna H, September 28, 2002 - Hi, I hope your head doesn't get too big Jon, but I had to tell you that the last two times I have printed out an article and shown it to the doctors, they have commended me for keeping up to date with my husband's CHF. That wasn't the response I expected. I was worried they would think I was trying to second guess them. Instead they were glad to know that we are working as a team.
     I feel for all spouses who are having a hard time getting their loved one to watch salt and diet. Luckily my husband found out quickly that too much salt meant more time in Club Med. He is very good about never salting his food and we only cook with herbal salt substitutes.
     Sometimes he gets very discouraged though, like today when they decided to bump up his digoxin again. He thought they would raise the Coreg but they didn't. The doctor explained that additional Coreg would lower his already low blood pressure in addition to slowing his heart. After he understood, he felt better. She also explained to him that his confusion, forgetfulness and trouble thinking would ease once his medications are better regulated. That was very reassuring to him. I had not realized that he was worried about the fuzzy thinking being permanent.
     It is very difficult for me to go to his appointments since I am self-employed but it helps us both so much that it is worth the loss of income. Now if only my customers would be a little more understanding! <g> Suzy, Susan, Christine, Annie, Lois, Irene, Ginny, and others - you are all in my (very crowded) prayers.

Judy, September 28, 2002 - Hi, I am a caregiver who just last week lost her husband to end-stage CHF. Shorty (Jim) had been in the hospice program since 6/3/02. He was end-stage for the past 1 1/2 years. Our hospice nurses were just wonderful. Yes, they are used to cancer patients and it took awhile to learn more about CHF, but they did, and they were great.
     The nurse was the one to get morphine the last week of Shorty's life. He also had COPD and was on oxygen 24/7. However, death probably was due to a burst blood clot that destroyed his lungs. His oxygen was 52 the day after he took sick and 66 the day before death, even though his oxygen was up to 4 and 5 liters. End-stage is not necessarily an immediate death sentence but each episode may be the last. I've learned a lot. I would be glad to share if you want.

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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