Paul B 2-1 sodium restrictions & fatigue?
Jon's 2-1 reply to Paul B's 2-1 sodium & fatigue
Kathryn C 2-1 thank you to everyone
Jon's 2-1 reply to Jill's 1-31 CHF info & dealing with depression
Winston 2-2 seek insurance & longevity info
Gus R's 2-3 reply to Winston's 2-2 CHF - having & coping
Kathryn's 2-4 reply to Winston's 2-2 CHF & health plans
Winston 2-4 to Jeanette W
Diane Davis 2-5 seek reassurances regarding his CHF
Karen E's 2-6 reply to Diane Davis' 2-5 coping with anxiety
Clara 2-8 thx for help, more info
Jackie 2-9 my mom is in & out of the hospital
Jon's 2-9 reply to Jackie's 2-9 diet & meds are crucial
Jon 2's 2-10 reply to Jackie's 2-9 kidney failure possibilities
Jackie D's 2-10 reply to Jon's 2-9 diet & meds
Jon's 2-10 reply to Jackie D's 2-10 diet & meds
Lee B 2-10 CoQ10 & BP question, & more
Aganita 2-10 bad days & good days question
Jon's 2-10 reply to Aganita's 2-10 bad days & good days
Scott 2-10 seek CHF specialist in Michigan
Tonja W 2-11 need some questions dealt with
Kelly 2-11 really need some support & advice
Bill D's 2-11 reply to Jackie D's all those meds - consult a good idea
Anna Marie K's 2-11 reply to Tonja W's 2-11 dealing with doctors, meds & illness
Jon's 2-11 reply to Kelly's 2-11 for what it's worth
LeAnn 2-13 I don't know what to think or do
Linda Grant 2-13 questions about productive cough & more
Donna 2-13 what now?
Darlene 2-13 questions about my dad
Paul B's 2-14 reply to LeAnn's 2-13 coping with severe illness
Helen 2-14 very frustrated, seek general opinions
Tonja K's 2-15 reply to Anne Marie K's 2-11 thanks, hospital beds as an option
Jackie's 2-15 reply to Bill D's 2-11 thanks, some more questions - end stage?
Jon's 12-15 reply to Jackie's 2-15 end stage CHF
Jackie's 2-15 reply to Kelly's 2-11 end stage CHF
Bill D's 2-16 reply to Jackie's 2-15 diet, meds & more CHF info
Lisa 2-16 lost my dad to CHF, need to talk
Jim Spraker 2-16 doctor troubles, seek advice, help
Jon's 2-16 reply to Jim Spraker's 2-16 doctors are people too
Jim Spraker's 2-17 reply to Jon 2-16 tried that - another question
Jon's 2-17 reply to Jim Spraker's 2-17 technical difficulties - sorry
Jim Spraker's 2-18 reply to Jon's 2-17 I'll start looking, but,...
Jon's 2-18 reply to Jim Spraker's 2-18 the schedule right now
Jon 2, 2-19 hydralazine questions
Bill D's 2-20 reply to Jon 2's 2-19 hydralazine
Ann Marie K's 2-20 reply to Jon 2's 2-19 hydralazine
Debra K 2-21 update, dentist visit question
Kathryn's 2-21 reply to Debra K 2-21 dentist visit preparations
Cheryl 2-22 husband has CHF, cath & other questions
Mary F 2-22 what now? worried, with questions
Lesa M 2-22 seeking plain talk
Cheryl 2-23 lots of questions!
Jon's 2-23 reply to Cheryl's 2-23 some answers
Jon's 2-23 reply to Mary F's 2-22 some things you can do
Gail H 2-24 my mom won't see a doctor, what now?
Jon's 2-24 reply to Gail H's 2-24 for what it's worth
Darlene 2-24 how will Coreg affect Dad? & more
Gail H's 2-25 reply to Jon's 2-24 more info, more questions
Jon's 2-25 reply to Gail H's 2-25 about all I can say
Clara K 2-25 planning trip but,... have questions
Cheryl 2-25 pneumonia & CHF questions
Gus R's 2-25 reply to Cheryl's 2-25 CHFers & common "bugs"
Jon 2-25 adding to what Gus said
Cheryl 2-25 vasculitis & CHF?
Bill D's 2-25 reply to Clara K's 2-25 traveling with a CHFer
Clara K's 2-26 reply to Bill D's 2-25 update, traveling
Lesa M 2-26 do docs know what they're doing?
Annie G 2-28 update, planning a trip
Gus R's 2-28 reply to Lesa M's 2-26 possibilities
Kathryn 2-28 has anyone tried naturopathy?
Tina D 2-29 update on dad, coping & more
Kat 2-29 need advice
Karen D's 2-29 reply to Debra K's 2-21 getting info & support, coping & more
Paul B, February 1, 2000 - Hi all, I caught one of those medical reports on Pittsburgh television the other day that said some clinics are now treating Chronic Fatigue Syndrome with salt, as much as a person can stomach. Jon, I don't have any more information than that but it may be there's a link between limiting sodium intake and the fatigue that seems to be a big part of so many CHFers' lives. This is not a recommendation to start eating all the salty stuff again. My prayers to all of you. email@example.com
Jon's February 1 reply to Paul B's February 1, 2000 - Hi Paul, Naw, I don't buy it. CHFers are tired whether they eat a low sodium diet or not. Lots of CHFers don't eat low sodium and lots more don't even know they should eat low sodium. Eating an extremely high sodium diet would shoot your blood pressure sky-high which might offset fatigue, but would also land you in an early grave. Jon.
Kathryn C, February 1, 2000 - Hi, Thank you to everyone who responded to my last post about getting my son started on Coreg. He is still struggling and getting tired but I have to say a big thank you to this site for all the help and information you provide. Thank you Jon, for all your work. The information on the Coreg page was well worth the reading. Kathryncole@hotmail.com
Jon's February 1 reply to Jill's January 31, 2000 - Hi Jill, For CHF info, go to the top of this page and click on the words, "Site Index." For info on dealing with depression, be sure to read the current threads about it at the other side of The Beat Goes On. Jon.
Winston, February 2, 2000 - Hi, I'd like to thank Jon and everyone who contributed to this site. I found it very informative and a nice starting point for learning about CHF. My girlfriend may have CHF. Doctors are still doing tests, but based on the symptoms she's experiencing and what the doctors have told her, it seems likely that she does have CHF. I'm not giving up hope that her symptoms might not be caused by some other less serious medical condition, but at the same time, it's only prudent to learn as much as I can about CHF, just in case. Our situtation is complicated by the fact that she's currently living in Portland, Oregon and I'm in New York City. She plans to move back to NYC sometime this year. She had been living in NYC some time ago and only returned to Portland to help out her mom. This leads me to the first of 2 questions:
She's currently covered under OHP (Oregon Health Plan). If she moves back to New York, she'll probably need to change her health insurance. Does anyone have experience changing health plans after being diagnosed with CHF? I know it can be difficult if not impossible to get health insurance if you have a pre-existing condition. Any information or pointers would be appreciated.
She's also understandably afraid that if she is diagnosed with CHF, she will only have a few month left to live. While that is a possibility, it's not the only one. Unfortunately, I know of no one else who has CHF and so I can't say something like, "See: This person has the same problem you do and they've been going strong for X number of years." I think she's concentrating too much on the worst-case scenario, which is affecting her morale and mental health. If anyone is willing, I'd appreciate hearing how long people have been living with CHF. I believe it would help her and my own morale greatly to know that just because you're diagnosed with CHF, life can go on. Thanks in advance to everyone. Winston. firstname.lastname@example.org
Jon's note: Search in The Archives for "longevity" Winston. Be sure to also check out Who's Who
Gus R's February 3 reply to Winston's February 2, 2000 - Hi Winston, I don't know that you could say, "See, this person has the same problem you do and they've been going strong for X number of years" but I do have CHF and am still going after 7 years. First I would hope your friend does not have CHF. There are worse things to have, but it's not good. My wife developed irregular heart rhythms and palpitations while caring for her father but after some testing, the cardiologist said it was probably brought on by the stress and recommended she try Paxil, which ended those problems.
If your friend does have CHF, it's not the end of her life. Changes will be necessary but she could have many worthwhile years left. Jon is right in suggesting you read the old posts and the bios. You will see that most of us live far beyond the dox initial predictions. In my case, I was diagnosed as having CHF in the fall of 1992 and the doc said many things about how my life should change at once. This included immediate retirement and trying to get a transplant. I sold my small business, then had a hard talk with the doc. He said I had a 50% chance of living a year without a transplant, 30% for another year, and nothing beyond that was worth talking about. He was obviously wrong, and I've learned here that this is quite common. I don't know why, but suspect it is because of the big changes we have made in our lifestyles.
Ny the way, I did not have a transplant. I did go to a transplant center for evaluation but the condensed outcome of that is that since they had people who would never leave their facility alive without a transplant, someone who might have a year or so without one and who could enter and leave their facility under their own power was not eligible. Finally I would urge your friend to find a CHF specialist. Diane P's February 2, 2000 post on the other side and the link to Jon's take on the subject explain that very well. Best wishes, Gus R. email@example.com
Kathryn's February 4 reply to Winston's February 2, 2000 - Hi, I'm sorry to hear about her possible diagnosis. As you continue to read (this wonderful site especially), you will realize that you can live with CHF. I don't have an answer to the longevity question. It comes as a real shocker to learn that you have a serious life threatening disease like CHF. My son has it at age 26 and was diagnosed last August. He is sure doing a lot better now than before he was diagnosed.
We live in Portland, Oregon, and I know that the Oregon Health Plan is pretty limited in coverage. My son's employer just threw him a curve by announcing they were changing medical insurance coverage. I do not know what this will mean to him. I know that his primary care physician is covered but the new insurance company does not list any cardiologists. The documentation says that any outpatient cardiology care must be provided by one of their provider hospitals. We are waiting for the word on possible complications of coverage with his pre-existing condition. I wish you and your girlfriend well. I do know a good cardiologist in Portland but they do not take Oregon Health Plan patients. Cardiologists can be such snobs. <lol> It's nice to have a good High Falutin' Cardiologist when you need one to take care of a sick heart. Hang in there, Winston. Kathryncole@hotmail.com
Winston, February 4, 2000 - Hi, This is to Jeaneatte Walberger. I received your e-mail reply to my post and wanted to thank you for your message. I tried replying to your e-mail, but my reply bounced back. I was replying to JANDTUF@aol.com. Is this the correct address? I wanted to make sure you knew I appreciated your message and also to let you know there might be something wrong with your e-mail. Thanks again. Winston. firstname.lastname@example.org
Diane Davis, February 5, 2000 - Hello, I have been checking this site intermittently for awhile now and although I have good confidence in my husband's doctors, I am having more problems with myself. Three yerars ago I met the most wonderful man on earth. He swept me off my feet. I had been alone for 9 years andhave 3 children, and had not expected to meet anyone. This warm, sensitive person turned out to be my soul mate. He also had idiopathic cardiomyopathy from a viral infection. He works out almost every day as he has been an athlete his whole life, and it is probably what saved him this long, his doctor says; no free weights, just toning.
Since we have been together, he has had an embolic stroke. They now keep his Coumadin PT level at 3-3.5 and he is on atenolol, Vasotec, Lanoxin, Lasix, and potassium. He has had a cardiac arrest due to V-tach and has an ICD now. My problems are my own: anxiety, depression, insomnia. I have a constant fear of being left alone again. I find myself reacting to his movements or facial expressions with pangs of fear. He fell down in cardiac arrest in front of me. My dad died of end-stage CHF three weeks before Neil collapsed. I guess I seek reassurance that I will get over this. I am seeing a therapist. I am an RN myself, in physical medicine and rehabilatation, but a little knowledge can be bad, I guess. Neil is only just now turning 50 years old. He is retired. He has an EF of 36% and it has not changed in the last 3 years despite the arrest and stroke. He golfs and is in relatively good health, I think. Thanks for any reassurance you all can give. Di. Talldi3@aol.com
Karen E's February 6 reply to Diane Davis' February 5, 2000 - Hi all, Especially to Diane, Hang in there. Life is sometimes bad, sometimes good. I know you love your husband dearly. My husband suffers from mitral valve prolapse and we've only been married for almost 3 years, and I can't imagine my life without him. I was in an abusive marriage for almost 12 years and Jeff was the answer to many prayers. God will see you through, and it will take time but remember to take it one day at a time, and I have found that anxiety does tend to wax and wane. Y'all please remember to keep us in your prayers. Dad is doing okay for the moment but Mom had a very bad reaction to a steroid dose pack for bronchitis and the lab lost my blood work for my lupus testing. I just haven't had the nerve yet to go back and have them redraw the sample. On a lighter note, my Dad was unable to attend my niece's beauty pageant last year but we went tonight. She got Miss Congeniality and also First Runner-Up. Life does have its bright spots. Love in Christ, Karen Edge. email@example.com
Clara, February 8, 2000 - Thank you Jon, and everyone for being here. I've been reading for a while but have never posted. I am sorry this may be long but I have so much I'm worried about. My hubby is 69, with a history of major heart attack in 1988, followed by pulmonary emboli. He almost died at that time. He had angioplasty shortly thereafter. About the same time, he lost a kidney (necrotic - probably for 50 years) and sight in one eye, mostly detached retina. He wears an eye-patch, which makes him very distinguished looking, since there is some vision left and he has glaucoma in his remaining eye. He has been treated for high blood pressure and high cholesterol since before I knew him. We've only been married for 6 years. In October of 1998 he had another MI, 5-way bypass, another bout with embolisms, another smaller MI and has finally been diagnosed with CHF. I'm sure from what I read that it was there for a while.
Initially his EF was about 30-35% and we haven't heard anything different since. They did another echo but the doctor said things were unchanged, which may be true. Since reading here, that sounds great but he won't admit there is anything wrong even when I have to take him to the ER because he can't breathe; two ER visits, one because he couldn't breathe at all. In June, the doctor screwed up and took him off Coumadin. Three days later, we're in the ER with a series of TIAs (happy birthday to me). They managed to get things under control and immediately restarted his Coumadin. He's not had a repeat of that and he's not had any lasting major side effects.
His current loss of short term memory seems normal from what I read but it could be connected. My major questions concern what I should expect, since he refuses to consider sodium intake. He says he won't give up all his pleasures. I never use salt when cooking and he uses a salt substitute at the table but he won't give up "fast food" - major source of sodium, nor will he consider sodium content in his favorite snacks. His meds are:
Jackie, February 9, 2000 - Hello all, My name is Jackie. I'm from New York. My mother has CHF. She is 56 years old. She had a heart attack at age 49 and a triple bypass followed. She was doing okay for 4 years. Over the past 3 years, her health has declined rapidly. She's been a diabetic for 25 years. She's been in the hospital 6 times in the last 7 months - each time with CHF. It just kills me to see her health declining so badly. She rarely goes out anymore and it seems as if they put her in the hospital, get rid of the fluid, send her home and within 3 to 4 weeks it all starts again. I feel as if they should be doing more for her. Her kidneys are also starting to fail. She also lost complete vision in one eye because of diabetes. Thank you Jon and everyone else for being here and for listening. It helps so much to know I'm not alone. firstname.lastname@example.org
Jon's February 9 reply to Jackie's February 9, 2000 - Hi Jackie, Does your mom correctly control her diet? A low sodium diet is the primary way to avoid the hospital when you have heart failure. Since she is also diabetic, she really needs to be strict about what and when she eats and drinks. Unfortunately, people who do not write down everything they eat or drink in a day always think they are being better about it than they really are. This is no joke - diet and meds are the 2 things that must be right to keep her out of the hospital. Please let us know if you need help with a low sodium diet plan for her. You can start at Kitchen Corner. If you can send us a list of her meds, maybe we can offer subjects to discuss with her or her doctor about them, too. By the way, welcome to Jon's Place. ;-). Jon.
Jon 2's February 10 reply to Jackie's February 9, 2000 - Hello Jackie, My mom recently entered the hospital, this time for kidney failure. Her doctors said that her kidney function has decreased, perhaps due to the medications she was on. They now have her potassium levels reduced and are getting her other electrolytes in balance (they were life threatening). This all happened very quickly after getting some teeth pulled at the dentist. She is not out of the woods yet but is improving and I remain hopeful. Anyway, in searching the Net I have found lots of info on the long-term effects of ACE inhibitors on the kidneys, so that could be something to watch for if your mother's kidneys deteriorate further. Also recommended is a low-protein diet for people with kidney problems. email@example.com
Jackie D's February 10 reply to Jon's February 9, 2000 - Hi Jon, My mom was never strict about her diet until recently. So now she's paying for all those years of not watching what she ate. She says she does eat a very low sodium diet now. She's definitely overweight and doesn't exercise very often because she says she's always tired. Here's a list of all her meds:
They continuously change her meds around too. Thanks for all your insight. Jackie. firstname.lastname@example.org
Jon's February 10 reply to Jackie D's February 10, 2000 - Hi Jackie, I'm guessing from the combination of Imdur, atenolol, hydralazine and Cozaar that she has really high blood pressure but I have never heard of anyone with a need for all 4 of these meds at once. It sounds possibly dangerous to me and it certainly explains why she is tired. Even if her illnesses did not make her tired, this combination of drugs would wear her out like nobody's business! Have you thought about having a pharmacist do an official written consult? Medicare often pays for this and it might get her meds down to a more manageable number, as well as decreasing side effects. Hey Bill, what do you think (whip out that meds CD). Jon.
Lee B, February 10, 2000 - Greetings from Canada, On behalf of my husband I visit this site on an almost daily basis. Thank you Jon, for all the helpful information. I have a question. My husband has CHF, diabetes, hypertension, failing kidneys, etc,... Regardless of the number of diuretics, blood thinners, diabetes meds, heart and blood pressure pills the doctors prescribe, recently his blood pressure will not drop from the 170/90-180/95 range. About 9 months ago he started taking CoQ10 and has worked up to 180mg daily. He weighs just over 200 lbs. He watches his diet reasonably well. He appears to be under the care of a good internist. In fact, this doctor did wonders for him this time last year when his kidneys tried to shut down. Has any one experienced an increase in blood pressure as a result of taking CoQ10? Any other comments would be appreciated. By the way, for any of you living near the Canadian border, I am buying at Wal-Mart, CoQ10 30 each 60mg pills at $18.43 Canadian, including taxes. I was in the US in January and I didn't see any that inexpensive, especially when one does the math between our dollar and yours! It might be worth a trip across the line if you live close to the border. Take care. I look forward to hearing from some of you. Lee B. LeeB@Stewart-Greenslade.com
Aganita, February 10, 2000 - Hi, Here is a question I am sure you have answered many times, but I still don't quite understand the answer. My friend Eris, has congestive heart failure and has, all things considered, done well. However, she has many days when she is really exhausted and some where she feels relatively fine. Now I know Jon, you emphasize that this usually occurs. What I don't understand is why when she takes the same medications at relatively the same time day after day, her physical state isn't more consistent. Why the ups and downs? By the way, she just celebrated her 75th birthday on February 7th. email@example.com
Jon's February 10 reply to Aganita's February 10, 2000 - Hi Aganita, Good to hear from you again, it's been awhile. I'm going to go waaay out on a limb here and make some guesses about good days and bad days. Please remember that these are guesses and I have no medical evidence to support them.
I think one factor is hormones. As you know, these little goobers circulate in our blood stream and under certain circumstances organs may cause more hormones or different hormones than usual to scoot around and wreak havoc in our body. Some of our CHF meds depress or inhibit these hormones or the actions they can take. So, our bodies get confused at times by the contradictions - the body wants to make hormones to do plan A and we won't let them by taking meds that force plan B into effect.
Like others, I believe quite firmly that heart function varies from day to day and from hour to hour. I think our weakened hearts simply get tired and do less work some days than others. I realize this is a very over-simplified explanation but I think you get my drift. We also need to remember that we had bad days when we were healthy too: days when it was a lot harder to get out of bed even though we got enough sleep; days when we just couldn't get motivated even though we felt ok; and so on. Now, when we are weak physically all the time, those tendencies are more evident, is all.
I'm sure there are many other factors, including the fact that when you are physically tired, it is a lot easier to let down your "guard" and allow mental laziness to take over. <g> Anyway, no science here but maybe it helps your understanding a bit anyway. Jon.
Scott, February 10, 2000 - Hi, My father has been having heart problems for some time. He had 6 bypasses done a year ago. Recently he has been exhibiting all the symptoms of CHF. He has had his lung tapped 4 times in the last 6 months and they tapped it twice in the last 2 weeks, taking out almost 3 pints of fluid. He has a GP and a pulmonary doctor and a cardiologist. None of them seem to have any answers for us on his condition. He is on 20mg Lasix 3 times a day, Vasotec, Levoxyl, Lanoxin, K-Dur and aspirin. I am in desperate need of a CHF specialist in the Southeast Michigan area. We are approximately 40 miles north of Detroit. If anyone knows of one, please reply. Jon, thanks for this site. I've been praying on what to do and found this site yesterday. I'm reading everything you have here. It's great. May God bless you! Thanks, Scott. firstname.lastname@example.org
Tonja W, February 11, 2000 - Hi, I am posting this message with the hope that someone will lead me in the right direction. My grandmother has diabetes. Her health has deteriorated dramatically over the last six months. She is now just about completely blind, has gone into kidney failure and was just told that she is in heart failure. Her heart specialist pretty much told her not to lift anything over 10 pounds, don't take any stairs, and sent her on her merry way with a diuretic to take once a day.
When she went to her family doctor, he told her to take the diuretic only once a week. The fluid seems to be building up very quickly. Her legs are very swollen and she is gaining one to two pounds a week. She underwent surgery to have a shunt put in for dialysis about 3 weeks ago for the kidney failure. Would dialysis help reduce some of the fluid built up around her heart? She is having such a hard time breathing and when she sits down, she falls asleep. This just doesn't sound good to me.
The specialists seem to always be in conflict about her medications and in the past year she has had a mini-stroke and a couple of what they called mini-heart attacks. She has never been hospitalized, though. I really need someone to be honest with me. I know no one can predict how long someone has, but I am hoping my gut feeling is wrong. I lost my mother to a very long, drawn out battle with cancer 3 years ago. She was only 45. My grandmother is only 68. I have 3 children and she always wants them around, but I am so afraid it is wearing her out physically. She says that we are the best medicine she could possibly have. :-) She is so wonderful and has held our family together since my mom passed away.
I just need to know what can be done to help her at least be more comfortable. Any advice would be appreciated. One more thing before I go - she is allergic to a lot of medications, including ACE inhibitors. I have also heard that CHF can alter the results of BUN tests and Creatinine levels. Does anyone have any more information on that? Thank you so much, Tonja. email@example.com
Kelly, February 11, 2000 - Hey Jackie, I kind of know how you feel. My mom was just diagnosed with CHF today. She too is a diabetic and doesn't watch her diet. She also has high blood pressure and recently had an abnormal stroke. The doctors didn't know what happened, and I don't know what to do. I feel as though I should be doing more; almost a guilty feeling, but I can barely take care of myself. I haven't been to school since September of 1999 because I constantly worry about my mother. February 8, 2000, is when she got really sick and was having trouble walking and breathing. Her sight got worse, but what kills me is that one of my sisters who is 32 and lives in the same house as me and my mom, didn't do anything because she "didn't want to sit in the emergency room for 12 hours." I just cried what she said that.
I was in the hospital at the time she was rushed to a hospital herself. I just got out today, after 13 days in the hospital. I had a bone infection in my leg. I just feel like every day I'm going to lose her. My dad died 3 years and 2 days ago from a heart attack and may have had CHF also. Three years to the day, my mom is diagnosed with CHF. It's just too much for me to bear! Any support will be greatly appreciated.
Anyone who reads this please, e-mail me anything. I don't know what to do anymore and all 4 of my sisters are no help to me or my mother. They are all older then me (32, 31, 26, 21, and me I'm 15). I look foward to any support I can get. Thank you, Kelly. Bay41598@aol.com
Bill D's February 11 reply to Jackie D's February 11, 2000 - Hi Jackie, What Jon is talking about is my Mayo Pharmacist CD. It allows me to look up each medicine and see it's side effects, what other medicines are contraindicated and when you have a disease that it might effect adversly. Your Mom is a walking drugstore and really needs a Clinical Consulting Pharmacist to write his suggestions to her doctor. He will need to know what's wrong with her, what medicines she takes, the doses and when she takes them. It will be six pages of Greek to you but the doctor will understand it.
Pharmacists know a lot more about medicine than doctors do. About 85% of doctors welcome that consult and 15% are insulted. Those CCPs are employed by nursing homes and HMOs. They often reduce medicines from 15 to 7 and the patients are better off. You'll have to find one that does consults. The average pharmacist working for a chain doesn't have time.
Just in passing, Imdur is hard on kidney disease. The kidney can't process the nitroglycerin fast enough. Watch for signs of overdose, including blue lips, fingernails and palms. Atenolol is a beta-blocker and she can't stop taking it suddenly because of the risk of hypoglycemia. It is also contraindicated when she takes Clonidine. Hydralalzine is hard on diabetes. Cozaar is hard on the liver and can result in too much potassium. All medicines are a risk that sometimes patients have to take. Just after it says Clonidine is contraindicated with Atenolol, it goes on to say that if you're taking them together, don't stop either suddenly! I see a couple of CCPs online but I can't vouch for any of them. Call some and see. Bill D. firstname.lastname@example.org
Anna Marie K's February 11 reply to Tonja W's February 11, 2000 - Dear Tonja, I am probably like everyone else on this site, who will tell you to change doctors and find a CHF specialist. My 85 year old mother is alive today because of kidney dialysis; that was the only way they could remove the fluid on her body and it helped her kidneys tremedously. The Lasix had stopped working and now she is off dialysis and on Bumex, which is working very well at this point. My mom is doing well on hydralazine. She takes 25mg 3 times a day. This is an old fashioned medicine and inexpensive. The Bun and Creatine levels are not affected by CHF but by the medicines, especially Lasix. Please educate yourself on this site and be proactive with the doctors. My mom's doctor actually appreciates my knowledge of the condition and the medicines. She also had a kidney specialist. I am very aware of the power of prayer and know that my mom is an example of that. Your grandmother's quality of life can be improved with the right doctor - don't let them treat her as a statistic. Metaphlady@aol.com
Jon's February 11 reply to Kelly's February 11, 2000 - Hi Kelly, I cannot give you a magic wand to sweep away your troubles, but here are some thoughts for whatever they may be worth. You have nothing to feel fuilty about. Let's be up front on that. You did not make your mom sick and you are not making her worse. You are not failing to care for your mom just because she is getting less healthy instead of getting better.
Maybe you can talk your mother into standing up and getting better care for herself and maybe you can't. You need to remember that she loves you too, and she wants you to be well and happy. Get yourself back to school and don't let your mom down by losing all your joy in life on her account. I am sure that is not what she wants from you. She just wants your love, and it sounds like she has that already. ;-)
Read up about CHF around this site when you have the time, and print it out if you can, especially The Manual. Then, you can read it to your mom some evening and try to help her understand that she can feel better and possibly live longer (better, too) if she works at her diet, and level of care. That includes trying a new doctor on for size. But remember - as much as you want her to be well, she wants you to be happy. Give it a shot, what do you say? Jon.
LeAnn, February 13, 2000 - Hi, My name is LeAnn. My father is a 45 year old man in the end stages of heart failure. I have a 14 year old brother and he is having a really hard time with this, as are the rest of my family. My father had his first heart attack almost 7 years ago. He had 4 bypasses done at that time. We thought after the recovery that everything would get better but it didn't. Almost 4 years ago, his doctor sent him to have a heart transplant but he was turned down because diabetes had done so much damage to his legs and body, even though it was then under control.
My father and the rest of our family has been going through this for almost 7 years now. Right now is the hardest time yet. My father was in the hospital lst November. He had another hear atttack on January 15, and is still in the hospital. He had an aterogram done right after this and we were told that this was it and that he doesn't have much more time. I have always been very strong; I guess I get this from my father but I feel like I am losing my mind at this point. I used to pray that my father would be around to give me away at my wedding and he did so last year. Now I just pray that I get to tell him I love him one more time. I am a 22 year old girl and I am losing my father to a diease that has so many cures, but yet so many people still die from this diease every day. Why?
I ask myself this question every day and never get an answer. I have never been so scared in all my life and I don't know how to deal with this and at the same time be there for my mother and my brother, and be here for myself. I would appreciate any advice anyone has out there. Just knowing that other people are out there with the same problems makes me feel that I can find someone to talk to and someone can listen to me. Thank you for taking the time to read this. email@example.com
Linda Grant, February 13, 2000 - Hi, My husband has CHF and an aortic valve replacement. They also did a mitral valve repair. All this was done about 4 years ago. Now, for the past 3-4 months he has developed a chronic cough with sputum. He does not smoke. He takes an ACE inhibitor, a mild water pill, valium to sleep, and Coumadin. Last week I took him to the regular doctor and he said it was bronchitis because at one time he was having a problem with yellow sputum. It's scary that this cough is hanging on so long. His doctor does not take this CHF seriously. It's a pretty scary thing in my books. I have lots of medical text books so I can learn as much as I can about it. Next week I'm taking him back to the doctor and demand an x-ray of his chest. Any suggestions as to why the cough is hanging around so long? Any other helpful advice? It's very stressful looking after a loved one with CHF, especially when the caregiver has heart, diabetes, lung, and spine conditions. Still, I keep on truckin' thanks to Jon's great site. I hope you are all staying well. Linda G. firstname.lastname@example.org
Donna, February 13, 2000 - Hi, The patient in this case is not me but my 90 year old mother. Mom is bi-polar on Depakote and Klonopin. She is also S/P colon cancer with an iliostomy. Even with all these health concerns and old age to boot, she has been able to function well, having a room at our house and eating with us. Before Christmas, she developed a "cold" resulting in a dry hacking cough. She grew progressively weaker and fell, resulting in going to the hospital. After being in the hospital several days, her x-ray finally said she had pneumonia. After several days in the hospital she came home on a decreasing dose of prednisone. After the prednisone was finished, she began being weak again. This got so bad we had to take her back to the hospital again. This time her heart beat was erratic and she was diagnosed with CHF. After getting her heart beat stablized, they sent her home again, this time on a low salt diet and Betapace.
I guess that my question is: At her age, do you think the only thing we can do is keep her as comfortable as possible? It seems as though aggressive treatment just makes her more depressed and uncomfortable. email@example.com
Darlene, February 13, 2000 - Hi, Back in December my father was feeling ill. He had not been to the doc in at least 20 years but I finally got him to go. They started first with a diagnosis of lymphoma, which floored us because my mom passed away 1½ years ago from lung and brain cancer. They drained 1½ quarts of fluid from one of his lungs. Well, now they have decided that it is CHF and emphysema. He was admitted in January because he could hardly walk anymore and was kept a week. He is home now, on oxygen, Lasix, digoxin, Aldactone, Prinivil and of course potassuim and magnesium. The docs are really not that informative, so thank goodness for this page. I would think that he is class 4. They said his heart is very scarred and the possibility of surgery is very slight. I know that no one can tell "how long" but it sure would be nice to know what's going to happen when. He hasn't been doing much and that is not like him, even at age 71 he was still working full-time, alternating days and nights. It's very hard to see him just sit around and do nothing. The doc he is seeing is an internist. They told us that a cardiologist is only required if surgery is an option (and it could be insurance issues also). Any info or thoughts on my dad's condition would be greatly appreciated. Thanks so much for this site. It has helped explain a great more than the docs do. Darlene. firstname.lastname@example.org
Paul B's February 14 reply to LeAnn's February 13, 2000 - Hi LeAnn, I'm so sorry to hear about your father's condition. As loved ones, we have a tough job. We want so much for a miracle or a sudden turnaround that often times just isn't going to happen. That is almost as depressing as the actual illness is for those who have CHF. I lost my dad 16 months ago to CHF and I went through a lot of the same feelings you are going through now. One more of anything the way it used to be is certainly a nice wish for you and your father. Why, is a question without a good answer. Me? My faith held me together when I didn't get a good answer to why. Make every moment count with your father, and share your grief and frustration with your brother. Sometimes, to be our strongest, we have to show those who look to us that we're just as vulnerable as they are. email@example.com
Helen, February 14, 2000 - Hello everyone, My name is Helen. I am 28 years old. I have been reading this message board for a couple of months now and think it is absolutely fantastic. Thank you Jon, for creating it. My Father has CHF and will be 70 years old in a few days. He was diagnosed in January of 1996 and told he should stop working - which he didn't. My father and my brothers and sisters adopted the attitude, "If we ignore it, maybe it will go away." My mother and I, on the other hand, have slowly watched my father deteriorate. I am writing now for my Mother's sake. She is not sure what my father's state of health is or what phase he is in because he does not tell her everything the doctor says. In most cases with my father, it's in one ear and out the other. I think he has just refused to deal with it.
My Mom has had to piece together bits of information here and there from the doctors and my father. I think is also a matter of her not knowing the right questions to ask when she does have an opportunity to talk to my father's doctor. My Mother is worried about not being able to prepare my family in time when my father's time comes. There have been times when we thought he wouldn't make it through the weekend, he was so weak and breathless. He goes to work every day but he has days where he is dizzy, exhausted, has no appetite or eats everything in sight; sometimes he can't sleep, other times he sleeps for 16 hours straight. His memmories of past events are sometimes distorted, or he will walk out the front door to drive somewhere and forget where he was going.
The doctor told my mom that his heart was only "working at 7 to 10%." I'm not sure what that means. From what I gather, all of his valves are deformed and his heart is too weak for an operation. My mother took him to the hospital over Christmas because he couldn't breathe and they just turned him around, and sent him home and said there was nothing they could do for him. I am sorry to ramble on like this. I am just incredibly frustrated. No one seems to want to offer a prognosis. I just wish someone could give me their opinion on what they think I should expect for my father at this point. Sometimes I think he could die tomorrow and other times I just have no idea. Any thought and words are welcome, thank you. Helen. firstname.lastname@example.org
Tonja W's February 15 reply to Anne Marie K's February 11, 2000 - Thank you Anne Marie, for replying. Sometimes it just helps so much to get it all out. One more thing I want to add because I have seen so many posts suggesting that people have to use so many pillows. After 2 years, we finally talked my grandmother into asking her doctor for a prescription for a hospital bed to help alleviate her cough and to help her breathing at night. He had absolutely no problem with it and it has helped tremendously. She has an HMO and it covered all of it. I don't know about other insurances, but I just wanted to throw it out there as an option! email@example.com
Jackie's February 15 reply to Bill D's February 11, 2000 - Hi Bill, Thank you so much for your insight and suggestions on my mom's meds. I'm definitely going to consult a CCP and see if they can help my mom and myself. I'm feeling the same as most everyone else posting messages - extremely frustrated with doctors and that they should be doing more for CHF patients. I just took her last Friday for her follow-up visit following her hospitalization. Her weight right now is still 7 pounds up from normal and she looks very swollen in her face, abdomen and legs. So the doctor asks her a few questions, listens to her heart and lungs, and then tells her he'll follow up in 3 months. I can't believe it. I feel as though this doctor is doing nothing to help my mother.
Maybe there is nothing further they can do for her now, I don't know. In the last month or so I've been trying to educate myself as much as possible on CHF. It's very hard and there is so much I don't understand, but this site helps a lot. I've read other messages and I've seen people refer to "the end stages of CHF." I feel stupid asking this question, but I'm wondering how you would know it's the "end stages?" Are there signs and symptoms? What does it exactly mean? Thanks for all your help and insight. Jackie. firstname.lastname@example.org
Jon's February 15 reply to Jackie's February 15, 2000 - Hi Jackie, Around here there really aren't many questions considered stupid. End-stage refers to class 4 symptoms that no longer respond to drug therapy. Those symptoms may yet be relieved by an assist device, IV drugs or transplant in some people but drug therapy no longer does the trick. This usually means that death is not far off, thus the "end-stage" name. Regarding doctors, be sure to read the page about them in the CHF FAQ. Jon.
Jackie's February 15 reply to Kelly's February 11, 2000 - Hi Kelly, I'm sorry to hear what you're going through. It's very easy to become overwhelmed by all of this. I have some bad days when I become very emotional over my mom's health, but I'm thankful everyday that I have my sister to talk to about this. It helps to talk to someone who understands what you're going through. At least for me it does. Kelly, please feel free to e-mail me whenever you want to. I'm a great listener and I'll do whatever I can to help. Jackie. email@example.com
Bill D's February 16 reply to Jackie D's February 15, 2000 - Hi Jackie, You said that your Mom says she is on a low sodium diet. I wonder if she really is? She has to read the sodium content of every can, box and bag. It's much more than throwing away her salt shaker! Our food tastes positivly awful until we get used to it. With her weight, she probably shouldn't go over 1,500 mg of sodium a day. Ask her if she's doing that, will you? Maybe it will explain those 7 pounds.
With some doctors, you have to nail them down and make them answer your questions! Did you ask about her 7 pounds of swelling? The faster you locate a Consulting Clinical Pharmacist, the better.
If you are only reading the messages posted on the forums, you are missing the most valuable part of Jon's Site! At the top of each Forum page, click on the words "Click Here" across from Site Index. You'll find Jon has a gold mine of answers to your questions. Maybe you could print out The Manual for your Mom. Bill D. firstname.lastname@example.org
Lisa, February 16, 2000 - Hello, I don't know where to go, so I am hoping you can help me. I just lost my dad on 2/13 to cardiomyopathy. I would really like to know if there is somewhere I can go to talk to others who lost a loved one to this. Thank you for your help and time. Sincerely, Lisa. email@example.com
Jim Spraker, February 16, 2000 - Hi, friends, Could someone please help me? I'm in a real bind. Mom's cardiologist has been extremely helpful up till now in working closely with me to keep Mom out of the hospital. I have tried to follow his directions to the letter concerning when to call him, and I have been very careful to follow his advice conscientiously. I have also asked him a number of times to give me some basic guidelines so that I could adjust Mom's medication myself. Suddenly, he has become passive agressive. e will not answer e-mails or pages and frankly, I feel as if I've been dropped out of a plane. There are few cardiologists in this area and at this point, I'm afraid to twitch for fear of making our cardiologist even angrier. If I have been too forward, it was only to try to save my mother unnecessary and extremely taxing hospital stays.
I live in Southwestern Virginia, 1½ hours from Roanoke, Bristol, and Winston-Salem, North Carolina. If anyone knows of a heart person who has some compassion and who will actually communicate, please let me know. Friedlander51@hotmail.com
Jon's February 16 reply to Jim Spraker's February 16, 2000 - Hi Jim, Doctors are people too. Have you tried just apologizing and asking him if you two can make a fresh start? Jon.
Jim Spraker's February 17 reply to Jon's February 16, 2000 - Hi Jon, Thanks for the advice, but I've tried that route and I received no response. It seems that doctors have a world system all their own, or at least one I don't understand. Do you have any favorite cardiology centers in this neck of the woods? Friedlander51@hotmail.com
Jon's February 17 reply to Jim Spraker's February 17, 2000 - Hi Jim, I lost use of many of my programs last night when the CD-drive controller died on my system, permanently, I believe (third time). Unfortunately, a CD contains my only source of accurate info on locations vs doctors, so I can't help until I get the new pooter, which will probably be at least 3 weeks the way things are going right now. Sorry. Jon.
Jim Spraker's February 18 reply to Jon's February 17, 2000 - Thanks, Jon. I'll do some research, but when you get your programs in order, I'd appreciate your input, if you have time. You're a good friend. Jim. Friedlander51@hotmail.com
Jon's February 18 reply to Jim Spraker's February 18, 2000 - Hi Jim, I'll be glad to help but count on 3-4 weeks. I went and got a cashier's check for the new pooter today and mailed it, and ordered my pooter, but it takes them one week to build it, one week for shipping, and one week for me to get everything up and running. Jon.
Jon 2, February 19, 2000 - Hello people, My mother has returned home from the hospital after her recent incident of kidney failure. The doctor said that when she was first admitted, her kidney funtion was below 5% and she had severe hyperkalcimia. Although her kidneys have improved enough to send her home, her meds have been changed. She is no longer taking K-dur, Aldactone, Altace or Coreg. They are now prescribing her a drug called hydralazine which is apparently easier on the kidneys. She still takes her amiodarone and Lasix however. Does anyone have any experience with hydralazine or some advice on this medication? firstname.lastname@example.org
Bill D's February 20 reply to Jon 2's February 19, 2000 - Hi Jon, I looked up hydralazine in my Mayo Clinic Family Pharmacist CD. It's primarily for her high blood pressure. It works by relaxing artery walls. Her doctor should keep an eye on her because its effects may be increased because of slower removal of the hydralazine from her body (the kidney's job). I see she's still taking Lasix. I would imagine it's a small dose, under 40mg? Her blood work must have shown she was ok in the potassium department. Bill D. email@example.com
Ann Marie K's February 20 reply to Jon 2's February 19, 2000 - Hi, My 85 year old Mom had been taking hydralazine for about 6 months. I feel that this has been one of the most stablizing medicines she is on. The drug is old-fashioned and inexpensive. She takes 25mg 3 times a day. I think it is for "afterload" and her kidney function does not seem to be affected. My personal opinion is that this drug is something more doctors should look into. Metaphlady@aol.com
Debra K, February 21, 2000 - Hi Everyone, I haven't posted in awhile. Fortunately, life has become somewhat more "normal." My husband has tolerated 100mg Coreg daily and recently had a MUGA indicating that his EF improved from 36 to 49%. I read the earlier posts on the CHFers' side regarding various figures for "normal" EFs. Our cardiologist stated 52-55 was normal for a 52 year old male who had never had heart disease.
After 3 months of outpatient cardiac rehab, nutritional counseling, exercise, and support group, he feels so much better. As Jon always says, how you feel is more important than the numbers. The past 6 months have been a daily, sometimes hourly struggle. Jon, The Manual, other sites, people's posts and questions have been invaluable. We've felt prepared going into each doctor's appointment, test, etc,... Every chance we get, we've been passing on your site address. The cardiac rehab team found it amazing. Most of their patients have CAD and your site has broadened their resources for CHFers.
I have one question: Are there any special precautions one should take before going to the dentist? I saw 20/20 on the 18th about contaminated water lines. My husband's diagnosis included idiopathic cardiomyopathy. So you see I am always apprehensive if there is any chance of infection. Thanks again for being here. You've helped my entire family. Dakazz@hotmail.com
Kathryn's February 21 reply to Debra K's February 21, 2000 - Hi Debra, My son has idiopathic cardiomyopathy and has had a lot of dentist visits over the last 4 months. Any dentist worth seeing should prescribe a high dose of antibiotics to be taken prior to any and all dental procedures. Evidently the antibioltic insures that there is no bacterial contamination from the mouth escaping into the bloodstream. That could be especially bad for anyone with heart problems. I believe my son takes four 500mg amoxicillin pills one hour prior to the procedure, no matter what the procedure (even if its just cleaning). I may be wrong about the dose, but I know it's a broad spectrum anitbiotic. Also, you should give a complete list of all medications (especially blood thinners) to your dentist. Take care. Kathryncole@hotmail.com
Cheryl, February 22, 2000 - Hi, My husband Jim is 48 and has just been diagnosed with CHF. It's just too hard to believe. They think a virus attacked his heart at least 6 months ago. They are calling it cardiomyopathy. They say his heart is working at 20%. They've put him on an ACE inhibitor, BP meds and fluid pills. He didn't even have high blood pressure, and he quit smoking 10 years ago! They have reduced his fluid intake. He was in class 4 CHF when he was admitted to the hospital. We thought he had pneumonia. We had no idea it was his heart. He had a heart cath on Friday and had a reaction to the dye and he got really sick.
He now is coughing up blood and has a sharp pain in his right side and back. Did anyone else experience this when they had a heart catheterization? They say they may have scraped his lung with the probe or he may now have bronchitis or pneumonia. He is so depressed. He hates the way the meds make him feel. He has been in the hospital a week now. What is the outlook? Will he be able to work? He's a security guard and walks 8 hours a day. If he can't work, will he qualify for SSI? He wants to work and do all the things he has always done, but walking to the bathroom exhausts him now. I can't tell what is physical and what is mental at this point. Any help will be appreciated. firstname.lastname@example.org
Mary F, February 22, 2000 - Hi, My 86 year old father has CHF, a-fib, mitral regurgitation, HTN with ruptured chordae and as of Friday, he also has pneumonia. His meds are:
Even though his stomach has been upset, he had not been vomiting until today. It was a fairly violent episode and I called the doctor, who basically told me to sit and wait to see if there are any further changes. Since Friday his ankle swelling has been fluctuating. Can I do anything else or do the doctors think there's no hope? Why, because of his age? What can I expect? email@example.com
Lesa M, February 22, 2000 - Hi, My 33 year old brother was diagnosed about a week ago with cardiomyopathy. He got a second opinion today at one of Pittsburgh's leading hospitals by the head of Cardiology. His EF is 47%. The doctor scheduled another echo for Friday. He told him that he has a leaking valve. What else? Ugh! I'm so frustrated! He's had what they tell me is a bicuspid aortic valve since he was a boy. Does anyone have a clue about this? I'm drained already, and just want some plain answers. Thanks a bunch in advance. Lesa. firstname.lastname@example.org
Cheryl, February 23, 2000 - Hi, I read The Manual and found lots of helpful information, but I still have questions. Why did my husband's doctor go into his lung and look around during the angiogram? He said it was to measure pressures, but why? I don't see that addressed on any of these pages. Now they think my husband has a blood clot in his lung, possibly a side effect of the angiogram. Is that common? Is it reasonable? Could his heart just be making blood clots or allowing them to form? Is the only way to make sure to do another angiogram? They did several tests yesterday: ultrasounds and blood work. They're going to do a bronchosopy today. We don't know whether to trust these doctors or not. We are totally new to the "heart" thing. email@example.com
Jon's February 23 reply to Cheryl's February 23, 2000 - Hi Cheryl, I don't know if your husband is going to able to go back to work. That's simply outside anyone's ability to know here. It depends on what caused his heart failure, whether that cause can be directly treated, how good his doctors are, and it depends some on plain luck.
Will he qualify for Disability? I don't know that either, but you can find out. Call the Social Security Administration and have them check whether he has enough hours the way they figure them. That's the only consideration for being qualified to apply for Disability. You can read more about SSD here. There is a big difference between Disability (SSD) and Supplemental Income (SSI). The link will lead you to SSA's site, where you can read up on the details, and then come back to ask more questions.
I did not have any reaction to the dye or the procedure itself when I had my cath done (both left and right heart cath). Hopefully, others can tell you of their experiences. Usually, lung pressures (pulmonary pressures) are checked with a right heart cath - the one where the catheter is inserted through the neck instead of the groin. This is normal for diagnostic purposes. High pressures in the lungs and in the blood vessels between lungs and heart have a large effect on the heart. After all, they are part of the same physical system. There is a brief explanation of how the heart functions on the EF page, which may help you understand how closely related heart and lungs really are.
Any time an invasive test is done there are risks. If your doctor did not describe the possible risks to your husband before the procedure, he's made an awful mistake but keep in mind how hard it is when you're under the stress of a new CHF diagnosis to remember exactly what the doctor said and when.
Common and reasonable are tough words to answer. Blood clots happen as a result of cath, but not often. I don't know the statistics, but almost 1% of cath patients die, so side effects are ceratinly likely to happen now and then. Yes, his heart could be making him more clot-prone but this is usually a result of blood pooling in the heart chambers due to poor heart function or arrhythmia (atrial fibrillation or a-fib). I'd say the doctor's explanation is reasonable. It could just be one of those things, or it could be a result of a mistake made during the procedure. Unfortunately, how is a patient to know? It's the sort of thing we all live with who have CHF - the possibility of a mistake or side effect giving us grief. Another cath is not necessary to deal with a blood clot, as far as I know. Powerful blood thinners may be used, called heparin and Coumadin. You should read about them at one of the drug sites on the links page.
Trust in your doctor needs to be built up over time. The main thing right now is to be sure that your husband is being cared for by a CHF specialist, not an internist, regular MD, or even a general cardiologist. The second thing for the moment is to check the doctor to see how experienced he is in dealing with invasive testing like angiograms. Cardiologists who specialize in these procedures do them better and safer. They are called interventional cardiologists. You can check board certification through my Links page and you can call your state medical association to check further. Talk to your regular MD to see what he thinks of the specialist. Try to contact the head resident (in person) at the hospital involved and speak to him privately. He knows doctors there better than most and may speak to you off the record. In other words, ask around.
As for your husband's state of mind, I would guess he is shocked, confused, scared and depressed. Who wouldn't be? Tell him about us, though! We have been living with the same general illness, some of us for a long time. Maybe that will give him something to cling to until he gets out of the hospital. Also, remember that God is everywhere, all the time. Ask Him for a favor. He's known to grant them now and then, I hear.
Be sure to ask, ask, ask! Don't let a doctor or a nurse do anything until you understand exactly what the procedure or pill or shot or IV or whatever is for and what the possible side effects are, as well as the potential benefits! This is your RIGHT. Doctors can explain thngs in plain English if you insist. If a doctor refuses to explain slowly and in detail, fire his sorry butt and hire a different one. They work for you, you know, not the other way around. Some doctors get that confused. ;-). Jon.
Jon's February 23 reply to Mary F's February 22, 2000 - Hi Mary, While it's true that many doctors do not treat elderly CHFers as aggressively as younger ones, your dad's drug therapy seems pretty good at first glance. I don't know what HTN is and so can't comment on that. What can you do? Keep him on a low sodium diet, ask his doctor if your dad's fluid intake should be restricted, be sure his pills are organized in a weekly pill planner so he doesn't take the wrong ones or the wrong dose by mistake, coax him into getting up and around (exercise) and maybe even in catching some fresh air outside, and shower him with love! You might want to print out The Manual for him as well. In my book, the number one suggestion is sincere prayer for his comfort. Jesus is the only one who can treat the entire man, not just the body! Jon.
Gail H, February 24, 2000 - Hi, My 91 year old mother is bedridden. Because we live in an upstairs unit, it is impossible for her to see a doctor. When the rescue squad removed her during a recent hurricane, she swore she would never again go through the trauma of being removed from our home of 50 years unless she was deceased or otherwise unconscious. She obviously has advanced CHF. I can't get a doctor or even a nurse to examine her in our home to at least prescribe medication. The last time she saw a doctor was l994. She has no meds. I care for her 24/7. I keep her sodium low and give her herbal water pills, but can't get any meds without a prescription. Any ideas?
Except for CHF, she appears otherwise healthy and extremely mentally alert. Help! I am thinking about going outside the US on the Internet and finding a doctor in Cuba or somewhere that could assist my husband, a former EMT Paramedic, in diagnosing and treating my mother's condition. firstname.lastname@example.org
Jon's February 24 reply to Gail H's February 24, 2000 - Hi Gail, That's probably a really bad idea. CHF is not a disease, it's a set of symptoms that result from something else weakening the heart. It's going to take a doctor who physically examines and tests your mom to figure out what the underlying cause is and how to treat it. Do you have health insurance?
How can you be sure she is mentally alert when she refuses to avail herself of easily obtained medical care that may drastically improve her quality of life? Does she have a psychological disorder that makes her afraid to face the "outside world?" If so, maybe you should talk to a social worker to see what resources are available to help her face a trip "outside." If not, have you sat her down and bluntly talked to her about her refusal to seek medical care? It's her choice, but if she does not want to be helped, do you really want to go against her wishes? This sounds like a story I'm not hearing in its entirety, so I can't really make intelligent suggestions. These are just things to consider. Jon.
Darlene, February 24, 2000 - Hi all, My dad was admitted the other day because his potassium level was way high at 7.1. He should be going home today. They are adjusting his meds and putting him on Coreg. At his doctor's appointment (the day we had to admit him), we asked about a cardiologist. He referred us to one, but since he was admitted that night, one stopped by and told us the internist was doing exactly what he would and if any issues came up or problems he would be available but until then just to keep seeing the internist. He is now off the Lasix and potassium. We are still unsure what else they are changing.
How is the Coreg going to affect him? His blood pressure at the appointment was 104/52 and he had been really lightheaded. His blood pressure usually is about normal. They did say that a valve is leaking, his heart is scarred and enlarged. He may be off the oxygen too. His pulse ox was 96% and insurance will only cover oxygen if it is under 89%, which it was 2 weeks ago. Darlene. email@example.com
Gail H's February 25 reply to Jon's February 24, 2000 - Hi Jon, Thanks for your fast response. Obviously, my mother has more psychological problems than Howard Hughes did at the end. She doesn't want to face the truth. When I do pin her down with the facts, she goes into a panic attack and it takes me several days to stabilize her emotions and breathing. She would be willing to see a home health doctor or PA, but will not consent to hospitalization. Her sight and hearing is failing. It isn't a matter of money or insurance. It's that the only way a doctor will see her is in his office and she honestly feels the trip will either kill her or cause her to get a one way trip to a hospital. I can't see carrying her down the stairs and out of the house against her will and delivering her DOA. Isn't there something in the Oath about "the care should not do harm to the patient?" She doesn't want to face what is really wrong with her.
Why is it so hard in America just to have someone visit a bedridden person not currently under the care of a physician? We doubt if she will ever be cured at her age and condition, but at least there should be a way to do something about her edema and high blood pressure before she strokes or drowns. Her legs have swollen to the size of tree trunks. Perhaps your readers have some suggestions? Her shoulders are frozen and muscles are atrophied so that she has to be assisted with her bodily functions. She remains in a sitting position 24 hours a day. I have been caring for her 24/7 for the past 3 years. Frankly, I'm not sure how much longer I can keep this up. In Christian love, Gail H. firstname.lastname@example.org
Jon's February 25 reply to Gail H's February 25, 2000 - Hi Gail, I can't believe I'm about to defend the medical profession! <lol> That's a real rarity. The thing you have to realize is that American medical care is based on one assumption: that the patient wants to receive care. The whole system is set up that way. I would guess that doctors are a lot less likely to face legal actions if they see all their patients in an office setting. Unfortunately for your mom, CHFers are almost always hospitalized until they are stabilized with drug therapy. It really is done that way for a reason. Starting up CHF meds is dangerous - they are not weak drugs.
I hope someone else has an idea because the only option I see is what I suggested already - see a social worker about community-realistic options. That's what social workers do. I have to confess that if your mom has frozen joints due to inaction, you may not be doing what is best for her by taking such "good" care of her for so long. Sometimes unpleasant options are the best course of action and she needs help you can't give. Jon.
Clara K, February 25, 2000 - Thank you Jon, for being here and everybody else, too. I've really learned a lot just by reading what you all have to say. Right now I'm worried by the way my husband's doing. He recently had such dizziness and such low blood presure (80/35) they changed some of his meds. They reduced his Lasix from 120mg to 80mg and changed his Prinivil from 12.5mg to 5mg. He still seemed to be retaining water a bit and has shortness of breath with very little exertion. The next day they reduced his Coumadin from 5mg to 4mg, and now they are concerned that his blood count went from 14 to only 10. I'm still not exactly sure what that means, but they seem to think he may be bleeding internally. More tests are in the offing. His EF was 30-35 last time. They were going to do another echo since the doctor thinks there may be more damage, but that's on hold until they figure out what else is happening.
We were really hoping to take a motor trip at the end of summer, like 4-5 weeks all around the country to see the things we never had a chance to, but now with the blood tests almost always twice a week, I'm not sure we will be able to. Does anyone know if this sort of trip is possible with the necessity of so many blood tests to regulate the meds? As it is, I'll probably have to do most of the driving, as he tires very easily. I don't mind that but I worry about getting the tests done and getting the doctor's instructions back and being able to have access to change meds. Sometimes I hate HMOs and at other times, I'm just glad we have insurance. If anyone can give me any advice, I'd appreciate it a whole bunch. LalaClara@aol.com
Cheryl, February 25, 2000 - Hi, Is pneumonia a common side-effect of CHF, or is it just coincidence that my husband Jim now has a pneumonia caused by a strep germ? Two antibiotics haven't worked and now they're putting him on a third. It sounds serious to me. He's just relieved it's not lung cancer. Will he now be more apt to contract pneumonia than the general population? Thanks for the replies to my last posts. They've helped. email@example.com
Gus R's February 25 reply to Cheryl's February 25, 2000 - Hi Cheryl, I think CHFers are more likely to catch everything than the general population, and we then have a longer, harder time recovering from it. If Jim hasn't already received them, he should talk to his dox about the shots for flu and pneumonia. If he isn't already, he should also exercise caution in his contact with groups and places where communicable diseases are most prevalent. We all have to decide what risks we will accept to do things we want to do, but just listen to the coughs and sneezes in public places, and think about it. If others in the household are exposed to these problems, they may bring home minor symptoms, and the CHFer may develop more serious symptoms.
Our grandchildren spent a year with us, and I caught more colds and sniffles that year than any other. Their company was well worth the symptoms to me, but we did come up with a simple thing that helped, at least in my mind. There are commercial products available but I'm cheap, poor and don't like their smell, so we filled a common spray bottle with a bleach water solution of 2T bleach per quart of water, and used it liberally on the kitchen and bathroom surfaces and on any other surfaces it wouldn't damage. There are many other steps one can take to reduce risks, so a review of common sanitation practices is well worth the effort for any CHFer. Best wishes, Gus R. firstname.lastname@example.org
Jon, February 25, 2000 - Hi, Just a quick addition to Gus' post: next to the softsoap in your grocery store, you will find little bottles of waterless, antibacterial hand cleaner. The stuff has come a long way since the days of auto mechanics' nasty waterless hand cleaner. <g> I carry it with me everywhere and use it after shaking hands in public, using public restrooms, petting other's dogs, etc,... Jon.
Cheryl, February 25, 2000 - Hi, Is there any connection between lupus, vasculitis and CHF? They now say my husband Jim may have vasculitis. email@example.com
Bill D's February 25 reply to Clara K's February 25, 2000 - Hi Clara, You'll have to face it. You can't take him anywhere until he's stabilized, meaning that his blood pressure is up so he won't keel over. You'll have to do all the driving, as Rosie drives me, because both your husband and me get dizzy and we could easily cause an accident. When he's stable, you could consider going some place. I have a Chrysler Minivan and a little electric powered cart that lifts into the back. It's great for going to malls and Home Depot. Bill D. firstname.lastname@example.org
Clara K's February 26 reply to Bill D's February 25, 2000 - Thanks, Bill, I guess I knew that, but he wants so much to make the trip, I was just hoping it might be possible. Today brought new obstacles. He's back in the hospital for tests for internal bleeding. He's had no real symptoms, but it's for real. His blood count dropped even more. When I left him this evening, they were starting blood transfusions, at least 2 units. Another new doctor - a gastroenterologist - will be running tests to determine where he's bleeding or whether its something else causing the drop in blood count. I guess we put the trip on hold. It's the least of my concerns right now. Keep your fingers crossed, say a little prayer. Thanks again to everyone here for all the help. LalaClara@aol.com
Lesa M, February 26, 2000 - Hi, My brother went for the echo on Friday and confirmed the cardiomyopathy diagnosis, but now the doc says he does not have a leaking valve. The doctor also says he does not have the bicuspic aortic valve that was diagnosed 25+ years ago. Do any of these docs know what they are doing? One seems to contradict the other. This is no time for all this confusion. We are all worried sick and the doctors are making it worse. Thankfully, my brother has decided to go for a third opinion. Does anyone else have these conflicting opinions, or is it just us? Thanks for listening. Praying for all heart patients, Lesa. email@example.com
Annie G, February 28, 2000 - Hi everyone, I keep reading but don't post often. Regarding HTN (Jon to Mary's February 23) usually refers to hypertension. My husband has been feeling quite good lately and we're even planning a trip. He was hospitalised in December of 1998 with an EF of 13% and class 4 CHF. He had just been diagnosed one month before. In June of 1999, his EF was up to 20-25%. He still felt fairly lousy but plodded on. He started back to work February 1 this year for 2 hours a day but felt really lousy and was worried his heart was getting worse. We are probably the only people happy to get a diagnosis of diabetes! His fasting sugar was about 370. His randoms are now about 100 and he feels much better, and his work is feeling easier too. In April we're off to Las Vegas for the first time. We're 42 and 48 years old. Wish us luck with the diet stuff! Annie G. firstname.lastname@example.org
Gus R's February 28 reply to Lesa M's February 26, 2000 - Hi Lesa, Since no one has given you good answers to your questions yet, I'll put in my 2¢ worth. The first thing that comes to my mind about the disappearing bicuspic aortic valve is that today's echo gives the dox a better view of the valve, so there is less guesswork involved now than there was 25 years ago.
As to the leaky valve that healed itself, I have one of those, and 3 ideas about it. When I have a good heart rhythm, my echo shows little leakage but when I am in a-fib during an echo, I can count on the doc saying it is worse and that it may be time to replace it. After 2 echos showing serious leakage he has ordered a TEE to get a better look at it, and both times the TEE has shown the leakage to be minor enough to ignore. My doc says a-fib does not affect the leaky valve but I am not so sure, and have not had a TEE while in a-fib.
My second idea about the healing leakage is similar to the one I had about your brother's disappearing bicuspic aortic valve. There's more guesswork with the echo than there is with the TEE. Reason number three for the on again/off again leakage is that most of the CHFers posting here talk about having good days and bad days. Couldn't valves have good and bad days too?
Finally, in regard to your "Do any of these docs know what they are doing?" question: Some do, some don't, but even with the best, there's more guesswork involved than we would tolerate from a plumber working on a clogged drain pipe. Best wishes, Gus R. email@example.com
Kathryn, February 28, 2000 - Hi, My son just recently was seen by a naturopathic doctor and was given several different kinds of "drops" to take. She has indicated that his liver needs to detoxify from the drugs he was taking for ADD over the years. This included Desipramine at 375mg per day for about 10 years. I will not attempt to list the names of the naturopathic medications he was given at this time since they are all in Latin and I can't begin to remember the spelling or begin to pronounce them. I haven't seen so much Latin writing since I was in Catholic school! <lol> I just wanted to see if anyone else has tried naturopathy? This doctor is also a acupuncturist. The results of how my son is feeling have been good so far. I see an improvement in his energy level and his complexion looks a lot better. He says he feels better. Thanks all, Kathryn. Kathryncole@hotmail.com
Tina D, February 29, 2000 - Hello to everyone, Jon and Bill, It has been awhile since I posted but I'm never out of touch. I read the posts here quite often and am so glad that The Beat keeps going on for everyone. I just wanted to update and send my regards to all who are going through the pressures and heartaches of trying to take care of someone you love with CHF. It is not easy, but well worth the extra years you get with them. My dad has been doing worse these last few months, with no energy whatsoever. Even going to the bathroom and back gets him out of breath but he is still hanging in there, and has his bad days and good. I was actually able to go see a movie the other day (first time in forever) and saw Hanging up. It was my life right there on screen, with one exception, and that being the sisters in the movie are replaced with 5 brothers. I highly recommend this movie to anyone who has elderly parents with illnesses because it really hits home.
Anyway, my good wishes go out to all and hopefully everyone is coping with their loved ones and this illness to the best of their ability. Jon, you sound in great spirit these days. How is that wonderful family of yours? I know your wife is your rock, and deserves tons of credit for all the time you take away from her for this wonderful site. Keep up the good work. This site is truly a blessing, and everyone who comes here never forgets how much it has helped them deal with everything. I know I learn something new every time I get on. Thanks again, and God bless everyone. Tina D. firstname.lastname@example.org
Jon's note: It never hurts for her to hear it! Linda's e-mail address is email@example.com
Kat, February 29, 2000 - Hi, I need to talk to someone. My male companion has been diagnosed with systolic HF - very unexpectedly. It figures: I divorced an alcoholic with diastolic HF. The thing that is upsetting my companion and I is that the cardiologist, after many tests, just jumped the gun and told him to take 2 months off, and get his life in order; in other words, prepare to die. I have done a lot of research on the Net and it seems like he is in class 1 or 2. All the research seems to give him a better chance of survival for a few years or more, but this cardiologist sure has shaken our world. We can't seem to get past the ultimate in bad news. He sees this doctor on March 1, and we are afraid to hear what the news will be this time.
He is 56, diabetic (not on the needle yet) and was in great health. He is having a hard time dealing with all of this, and is having sleep problems at night. He tells me that he drives around at night until he is tired. I wish that he would live with me so he would have some support. I have never seen such a confident man lose all of his confidence so fast. He is hoping to get a second opinion from the surgeon who did his bypass 10 years ago. Could someone tell me if all of these feelings are normal, and if they have ever been given such a prognosis so quickly, and if the doctor was wrong. We are in the Twin Cities, so Mayo in Rochester is another option along with the University. firstname.lastname@example.org
Karen D's February 29 reply to Debra K's February 21, 2000 - Hi Debra, I'm so glad that your husband is improving. After 18 months, mine is too. He took his third Vo2max test yesterday and the tech told us his score (tentatively and unofficially) was a high 19 or low 20. Six months ago he scored only 16.2 and had gone down from the one a year ago, which was 17 something. His EF has also risen from 12-15% when he was first diagnosed 18 months ago to almost 40% now.
I want to thank Jon and all the friends we have made through this site for your prayers, emotional support and good advice. Eighteen months ago we were told that Bill wouldn't be alive in 6 months without a transplant. Now he's improved to the point that his transplant cardiologist says he no longer needs one and doesn't need to see him again unless he takes a turn for the worse. Our local cardiologist says there is no medical reason for Bill's improvement and that he is truly amazed! I know everyone's CHF is different, but I do believe that the medical profession knows much more about how to treat it than they did a few years ago and that the information found in The Manual gives the patient and caregiver the necessary knowledge to actively participate in the patient's care - something that a few years ago wasn't probable. Thank you Jon, for all of the time and effort you spend on this site. Karen Deitemeyer. email@example.com
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.