Linda G 4-16 kidney stone treatment with CHF question
Jon's 4-16 reply to Linda G's 4-16 that's a tough one
Sherrell G's 4-16 reply to Rieale's 4-14 Medic Alert stuff
Kathryn C's 4-17 reply to Linda G's 4-16 kidney stone ultrasound treatment
Joe S 4-17 ibuprofen question & more
Kathy 4-17 diuretics question
Jon's 4-17 reply to Kathy's 4-17 diuretics info
Jana B 4-17 to Pat, Sarah & Medic Alert & more
Rob 4-17 intro, looking good now
Jon's 4-17 reply to Rob's 4-17 humans - we're odd, aren't we? <g>
Aubrey M 4-18 what should I ask my cardiologist?
Suzy B's 4-18 reply to Joe S' 4-17 CHF for long time, ibuprofen
Suzy B's 4-18 reply to Rob's 4-17 update & more
Sharon J W 4-18 Tom, please resend your e-mail
Renee M's 4-18 reply to Eris' 4-14 coping with diarrhea
Renee M 4-18 digoxin, Coreg & CHF meds timing
Beverly 4-18 silent heart attack questions
Jeanette's 4-18 reply to Cherita A's 4-13 coping with CHF, causes & info
Rick M's 4-18 reply to Renee M's 4-18 meds timing & helping your doctor
Rieale 4-18 seek pacer, ICD, trials experiences
Leland Y 4-19 seeking firewall info
Leland Y's 4-19 reply to Joe's 4-5 low sodium bacon & Kaiser CHF care
Brenda H 4-19 intro, has anyone here with IDCM improved?
Tony 4-19 Coreg woes - does it get better?
Pam M 4-19 seek ICD experiences
Steve 4-19 I think minerals helped me
Suzy B's 4-19 reply to Tony's 4-19 Coreg experience
Jon 4-19 Coreg & ACE inhibitors
Donna Z 4-19 update, Coreg & fatigue, & more
Jan S 4-20 dealing with this slump - Zoloft questions & more
Joe S' 4-20 reply to Leland Y's 4-19 low sodium bacons & to Tony
Jon's 4-20 reply to Joe S' 4-20 need some low sodium bacon info
Tim B's 4-20 reply to Judy Z's 4-15 coping
Ruthie A's 4-20 reply to Jon's 4-19 ACE inhibitor & beta-blocker timing
Jon's 4-20 reply to Ruthie A's 4-20 I apologize, but,...
Karen K's 4-20 reply to Jan S' 4-20 antidepressant experience
Mike W's 4-20 reply to Jon's 4-20 the art of medicating patients
Tim B's 4-20 reply to Pam's 4-20 ICD shocks experience
Ginger's 4-21 reply to Pam's 4-20 Lee's ICD forum
Maureen M 4-22 update, parenting questions
Beverly C's 4-22 reply to Jan S' 4-20 anti-depression meds
Joe S' 4-22 reply to Jon's 4-20 low sodium bacons
Judy Z 4-22 different test results questions
Jon's 4-22 reply to Judy Z's 4-22 can you supply any more information?
Robin L 4-22 flu with weakened heart questions
Jean C's 4-22 reply to Jon's 4-20 low sodium bacon in the midwest
Jon's 4-22 reply to Jean C's 4-22 thanks Jean!
Martine S 4-22 need info, advice & support
Bill D's 4-23 reply to Martine S' 4-22 CHF info & more
Eric's 4-23 reply to Martine S' 4-22 CHF info & more
Rieale 4-23 chest pain with no blockages questions
Murph's 4-23 reply to Jon's 4-20 low sodium bacon in the midwest
Jon's 4-23 reply to Rieale's 4-23 chest pain with no blockages
Joe S 4-24 episode while asleep, congestion & CHF, & more
Jon's 4-24 reply to Joe S' 4-24 figuring symptoms out
Jana B's 4-24 reply to Maureen M's 4-22 teens
Suzy B's 4-24 reply to Rieale's 4-23 chest pains
Judy Wasson 4-25 Zocor side effects - questions
Jeanette S' 4-25 reply to Martine S' 4-22 welcome, coping with CHF, info
Jeanette S' 4-25 reply to Jan S' 4-20 coping with depression, meds & more
Jamie S 4-25 question about dye used in MUGAs
Jean 4-25 seek Rx price checking site
Neil 4-25 thank you all for the help
Renee M's 4-25 reply to Jan S' 4-20 antidepressant meds
Ruthie A 4-25 changing technology
Suzy B's 4-25 reply to Jean's 4-25 checking drug prices online
Lynn M's 4-25 reply to Jon's 4-23 angina
Jon 4-25 framed version of site
Susie O 4-25 low sodium bacon brand info
Jon's 4-25 reply to Susie O's 4-25 web site ideas
Gus R's 4-25 reply to Jon's 4-25 like the frames
Jon's 4-25 reply to Gus R's 4-25 I do everything differently, I suppose
Claudia 4-25 bacon, antidepressants & an update
Emily N 4-25 seek CHF doc in Orlando, Florida area
Jean 4-25 thank you for the info
Virginia P's 4-25 reply to Lynn's 4-25 another way to test arteries for blockage
Renee M's 4-26 reply to Jamie S' 4-25 dyes injected during MUGAs
Marc S 4-26 bio, update & more
Jon's 4-26 reply to Marc S' 4-26 bios
Ray 4-26 do I have CHF?
Joe S' 4-26 reply to Claudia's 4-25 don't forget those chips
Judy S 4-26 depression & thyroid function
Karen K 4-26 update, new address
Linda M 4-26 Pravachol & sweats questions
Ginger 4-26 thanks to all
Jamie S' 4-26 reply to Renee M's 4-26 thanks
Milt's 4-26 reply to Joe S' 4-26 no salt added potato chip brand & more
Bill D's 4-26 reply to Ray's 4-26 CHF diagnosing & lower back pain
Rieale's 4-26 reply to Joe S' 4-26 low sodium potato chips
Tony 4-27 Coreg dosing - questions
Ray's 4-27 reply to Bill D's 4-26 congestion & more
Claire 4-27 intro, seek others & more
Jan S 4-27 thanks, tried it this way & more
Frank S' 4-27 reply to Ray's 4-27 could be rhinitis or bronchitis
Gus R's 4-27 reply to Claire's 4-27 the SSD process
Joe S' 4-27 reply to Marc S' 4-26 side effects & to Ray S
Jon 4-29 been playing with recipes
Kim's 4-29 reply to Ray's 4-26 getting the proper medical care
Ray's 4-29 reply to Frank S' 4-27 and to Joe S
Kathy 4-29 seek diuretic explanation & some dill pickles!
Ginger's 4-29 reply to Claire's 4-27 info & support, leg pain questions & more
Jon's 4-29 reply to Ginger's 4-29 leg pain, pain clinics
Carol W 4-29 alpha-lipoic acid questions for diabetic CHFers
Kathy 4-29 potato chips in North Carolina
Janet 4-29 seek others with chemo-induced CHF
Donna Z's 4-29 reply to Ray's 4-26 better safe than sorry
Gatha E 4-30 congestion and coughing, questions
Jon's 4-30 reply to Gatha E's 4-30 asthma inhalers & CHF
Gloria 4-30 staggering meds & meds-related depression questions
Gaile C 4-30 numbers, SSD, quality of life
Jon's 4-30 reply to Gaile C's 4-30 numbers, SSD, and quality of life
Rieale's 4-30 reply to Kathy's 4-29 low sodium dill pickle source & brand
Kathy S 4-30 thirst relief question
Joe S 4-30 misdiagnoses frustrations
Janet 4-30 leg & foot pain with CHF
Jon's 4-30 reply to Janet's 4-30 leg & foot pain with CHF
Jeanette's 4-30 reply to Kathy's 4-29 diuretics, potassium & more
Brian 4-30 protruding veins question
Jon's 4-30 reply to Brian's 4-30 protruding veins
Bill C's 4-30 reply to Gaile C's 4-30 EF versus how we feel & more
Henry T 4-30 got to keep our spirits high!
Kim S' 4-30 reply to Kathy's 4-29 cravings, life, this site & more
Linda G, April 16, 2000 - Hi, Are untreated kidney stones life threatening to people with CHF? My husband also a metal valve. The stone he has now is way up in his kidney. At one time he did have an obstruction in the ureter and an infection; that went untreated. I think over the years this has caused a lot of toxins from his kidneys to build up in his blood. I hope this has not affected his heart too much. Has anyone had the ESWL (kidney stone blasting treatment)? What did you experience? I've heard that persons with CHF and other serious heart conditions should avoid this treatment. The sound waves cause arrhythmias. Good health to all of you, Linda G. email@example.com
Jon's April 16 reply to Linda G's April 16, 2000 - Hi Linda, This one is out of my league. Have you posted to the Cleveland Clinic heart forum? Jon.
Sherrell G's April 16 reply to Rieale's April 14, 2000 - Hi Rieale, I chose the Medic Alert bracelet instead of the necklace. I wear it 24-7. I keep a medical history card and my AICD card in my wallet too, as well as a copy on the side of the refrigerator. Sherrell G. firstname.lastname@example.org
Kathryn C's April 17 reply to Linda G's April 16, 2000 - Hi Linda, My son, a CHF patient, had 3 kidney "blasting" treatments about 1½ years before being diagnosed with CHF. The only thing I can say for sure about the kidney stone treatment (blasting the stones with ultrasound) is that you have to go under general anesthesia for the procedure. This is because you must be completely immobilized. In my opinion this would be high risk for a CHF patient. As far as the sound wave disruption goes, I have no answer for you. I do know that they pinpoint the sound waves to the exact location of the stone in the kidney before they blast it and it is done underwater. I would recommend that you talk to a good urologist in addition to your cardiologist about the combination of threats of CHF and this treatment. You made me wonder if the kidney stone treatment had any cause and effect with my son's CHF. Kathryncole@hotmail.com
Joe S, April 17, 2000 - Amazing news: I just found out that my 96 year old neighbor has had CHF for years. I think this must be a record. Second, does anyone know if ibuprofen is harmful to us. I get awfully bloated after taking them. Joe S. email@example.com
Kathy, April 17, 2000 - Hi, This is my first time here. I just found the site. My question is, "Is there anything stronger than furosemide?" I am now taking 320mg per day and have been told that you can only take up to 600mg. Thanks. firstname.lastname@example.org
Jon's April 17 reply to Kathy's April 17, 2000 - Hi Kathy, Let this load and then read the section on diuretics. Jon.
Jana B, April 17, 2000 - Hi, First I want to say that I hate the way my Medic Alert bracelet looks. I feel like I am wearing dog tags! I looked into buying one of their more expensive silver or gold bracelets but opted out of that after talking to some doctors and paramedics. Apparently, the nicer (not stainless steel) bracelets look like jewelry and are not recognized by medical personnel as quickly as the standard RED snake emblem. So I am sticking to the ugly, won't tarnish, red one.
To Pat, you know I have never had my dig level checked and I have been on it for a year! I asked about it after reading here that it is so important and he said ok but never ordered it. I am going back this week and make him do it!
To Sarah, I just want to send my condolences on the loss of your friend. I am so sorry.
As for the other board, I don't post there but I do read and I am in constant e-mail correspondence with different folks over there. They help me and I help them, it's a great circle to be in! Best of health to everyone. I am doing really good! Jana Byers, age 36, DCM, CHF, etc, etc :-) JByers4u@aol.com
Rob, April 17, 2000 - Hi, I was an overweight (122kg), inactive 2-pack per day smoker. I always intended to lose weight, get fitter and give up smoking but I never got around to it. In December, 1999, I ended up in hospital following a small CVA. According to the neurologist, I "threw some plaque." While I was being examined for the CVA I was questioned about blood pressure, smoking, alcohol intake, and whether I had ever been told I had an enlarged heart! I found myself admitted to the hospital and spent the next week having several ECGs, a couple of echos, a Holter monitor, and a phenomenal amount of medication. I was told that I would possibly or probably die.
Six weeks later, in January of 2000, I saw the cardiologist who told me my heart was still "pretty trashy." He changed my medication, put me in a cardiac education and rehab program, and sent me on my way. In mid-March I went back to the hospital for an echo. My EF was 25%. At this visit I discovered that my EF in December was 12% and in January it was 21%, so we were very pleased to see a gradual improvement. in late March I had an angiogram and while chatting with the cardiologist he told me that there was "no significant coronary disease."
In early April I went to see the cardiologist again. We were expecting more of the same doom and gloom, plus a probable change in medication. It was not a visit we were looking forward to. I'd expected to slowly get worse and my goal was to stay well until the technology caught up (LVADs, etc.). I was aiming for 5 to 10 years, tops. He congratulated me, told me I was over the worst of it and that we should either see a slight but steady improvement over the next few years or I'd stay much the same. His expectation was to see an improvement. I asked him how far ahead we should be looking and he suggested medium to long term; "Hopefully you'll live long enough to die of cancer or something else." My cardiologist is a great guy. At first I hated him because he never gave me any good news but now I think he's a legend for telling me I'm not going to die! We walked out of his office and both got a bit weepy. I'm not going to die! The hard part now is maintaining the momentum. I'm looking at the choc-chip cookies and Coke, but staying with the rice crackers and low joule cordial. I was walking for 20 minutes 3 times a day, now I'm pushing myself to get in a 20 minute walk once a day. When I finish this, I'll go for a walk. :-) email@example.com
Jon's April 17 reply to Rob's April 17, 2000 - Hiya Rob, Congratulations on the good progress. Keep your nose to that exercise grindstone! We humans really are strange though, aren't we? I include myself. We are told we're going to die soon from this or that and we get all bent out of shape. Then we get a "reprieve" and we feel so relieved and hopeful. All along, we've known we're going to die anyway. A truck may run us down as we leave the doctor's office after getting that reprieve. Yet how many of us live like it's our last day here? Doing what's right, and making ourselves right with the God who's gonna meet us on the "other side?" Food for thought. Jon.
Aubrey M, April 18, 2000 - Hi y'all, I'm going to see my cardiologist on Thursday and am wondering what kind of questions I should be asking. He doesn't volunteer a lot! I am really enjoying this board. Aubrey. firstname.lastname@example.org
Suzy B's April 18 reply to Joe S' April 17, 2000 - Hi Joe, Yes, it is possible to have CHF for years. I've had it for at least 9-10 years and my husband's grandmother had it for almost 20 years. She actually died from complications when she was 97. Every case is different. About ibuprofen, my cardiologist said not to take it all because it is an NSAID and that's a "no no" for CHFers. I stick to acetaminophen and I've been fine so far. Suzy B. email@example.com
Suzy B's April 18 reply to Rob's April 17, 2000 - Hi Rob, I read your post and am happy to hear of your progress. What medications are you currently taking for your heart? I've been in CHF for a number of years and only take Lanoxin on a daily basis and Coumadin because of A-fib. Last summer I took a turn for the worse. After another cath, my EF was determined to be 30% and I was put on 3.125mg Coreg daily, slowly increased over the next few months to 3.125mg in the morning and 6.25mg in the evening. I also added 2.125mg Zestril nightly, slowly increasing that to 5mg daily. Now with all 3 drugs, my CHF has stabilised. That can change suddenly, as we all know.
I'll still need a transplant sometime but my heart is considered too healthy to be put on the list right now, even with the damage from 2 previous cardiac arrests. I have no blockages in my arteries at all. Personally, I'm hoping and praying that the combination of these 3 meds will keep me stabilised so I never have to be on that list. In rare cases that has happened. They have even stopped the clinical trials of this drug Coreg because of the success it has shown in treatments of patients with CHF. Some people unfortunately can't tolerate this drug but I was one of the lucky ones. I hope your health continues to improve. Keep a healthy attitude and watch the junk foods. I'm a chocaholic myself so its tough but do-able. Good luck, Suzy. firstname.lastname@example.org
Sharon J W, April 18, 2000 - Hey Tom, Our totally messed up computer deleted your mail on fibromyalgia before I could respond to you. Please try again. My other address is email@example.com. One of them will get through. I have good news for you on the subject. firstname.lastname@example.org
Renee M's April 18 reply to Eris' April 14, 2000 - Hi Eris, I also have had a lot of problems with diarrhea taking all of these meds. Even with all the rearranging and combinations I have tried, it still persists. I had a tendency to have it even before all these drugs, even though I had no digestive tract disorders. After putting up with it for a couple of years, I just asked my doctor for something for it. He gave me lomotil and it really helps. Diarrhea is a common side effect of many of the drugs we take. You may not be able to stop it, but there is help controlling it. I hope this helps. Renee M. Auntonay@prodigy.net
Renee M, April 18, 2000 - Hi to all, I have been reading posts about digoxin and Coreg. I cannot emphasize enough that we are all very different when it comes to drugs. What may seem like a lot to one person is not enough for someone else. I have been taking 0.5mg of digoxin for the last 6 years, before and after Coreg. My doctor couldn't believe I needed this much but test after testing at lower doses, proved it was not enough until I got to 0.5mg. I feel good at this dose and my digoxin levels are always in the therapeutic range. If you are not feeling well, insist that your doctor make some changes in your meds until it's right for you. What others are taking is only a guideline. It took me a long time to get the right meds, the right doses, and the right time of day to take them so I have the least problems. Also, don't be afraid to rearrange the times you take them. I have many once-a-day meds but if I take them all at once in the morning, I'm sick as a dog all day! I just started slowly rearranging them one at a time until I got the best combination. Granted, there are some twice-a-day or three-times-a-day drugs that you have no choice with. I feel a lot better. My doctor is very cooperative about this, because he wants me to feel the best I can. Thanks for listening to my 2¢ worth! I'm praying for all of you. Happy Easter. Renee M. Auntonay@prodigy.net
Beverly, April 18, 2000 - Hi, I just received results from a radionuclide test done yesterday. It says that I had a silent major heart attack sometime in the past that left half my heart dead. I just became short of breath in the month of December, 1999, then had chest pain one night and they found an LAD blockage of 95%. They fixed it but this is when they found the shocking heart damage. My enzymes were negative for that blockage event so any heart attack had to have been in the past. Now I have dilated cardiomyopathy, a moderate to severe mitral valve leak and left bundle branch blockage. My question is, "What could have caused my silent heart attack?" All they can find now is one eccentric crook that was blocked and the others are unremarkable. If half my heart is scar tissue now, do I take it for granted that there were blockages that caused the heart attack, but are now gone? I did read "nothing but stub left as it descends" on one of my reports. I need to understand how this could happen. Thank you for this site. email@example.com
Jeanette's April 18 reply to Cherita A's April 13, 2000 - Hi Cherita, You have come to the right place. We will help you all we can. I am a 33 year old who has DCM and was diagnosed with it and CHF when only 31 so I know what you are going through. It is scary to realize that your heart has become weak and may not improve but with time and the right doctors and info, you learn to cope and deal with it a lot easier. You seem to have the right questions to be asking the doctor. You might also want to ask him how you got a weak heart. Having a baby doesn't seem to have done it alone but would have contributed to the fact. A virus hit my heart (flu-like) and that is how I went into CHF. You might want to read The Manual. This will inform you of a lot of information as well as asking your cardiologist. There are alot of people who are in the same boat and you might want to look at the Me Too! page as well. There are a few who have had babies and found out they had heart problems. It is definitely worth looking into. I hope I have helped you. God bless and good luck. We are here for you if needed! Jeanette. firstname.lastname@example.org
Rick M's April 18 reply to Renee M's April 18, 2000 - Hi, Your experience with fine-tuning your drug intake is similar to mine. My doctor is with me on this and has often remarked on how different patients react to their meds in such personal manners. In working with him, I have found that keeping good records makes it easy to work together. I print up monthly calenders on the computer where I record my daily weight, blood glucose reading, and blood pressure if appropriate, along with any changes in my pattern of drug taking. I take them along to our appointments and he finds it helps him appreciate the cause and effect of our changes. I make charts of the blood glucose levels for my diabetes doctor, including a moving average line and this helps her so much, she asks to keep them to show her other patients. Of such small things, fame is made. email@example.com
Rieale, April 18, 2000 - Hi, I went yesterday for another checkup at Cleveland Clinic. My pulse rate was 50 and my BP was 98/68 so the doc said to keep the Coreg at 12.5mg. However, he gave me information about several trials that are recruiting for me to examine. One involves bi-ventricular pacing and the other two involve only pacemakers (one is the Miracle Trials). So now I'm facing a few difficult decisions to make about my future care. I've read up on all I could find here and at other sites about the treatments and now am looking for some personal results. Has anyone here participated in any Phase III trials? If so, what were your experiences? Does anyone here have personal experience with pacemakersor defibrillators? Dr. Starling feels that this may be of great benefit towards my long-term survival but ultimately the choice is mine, of course. Rieale@aol.com
Leland Y, April 19, 2000 - Hi Jon, Awhile back you mentioned about security on the Internet and you suggested a good program. I have misplaced that blurb somewhere. Will you please post the name of the firewall software again? Thank you, Leland. LYEE@socal.rr.com
Jon's note: See this post
Leland Y's April 19 reply to Joe's April 5, 2000 - Dear Joe, Where in heaven's name do you find bacon with sodium so low that it's comparable to a bowl of cereal? How many strips? I have spoken about the quality of care at Kaiser on a quite a few occasions. I received my monthly call by the Kaiser team yesterday, regarding my understanding and comprehension of CHF and me. They are so satisfied with my progress that I should be "graduating" from their program in the very near future. This is necessary for them to have enough staff to take care of the new cases of CHFers. Dr Shelly Rush's staff's parting advice was that now that my CHF is in control, I still have to collaborate with the Kaiser cholesterol clinic. More about this again later. Right now, I have the highest regards for the Kaiser teams. Leland. LYee@socal.rr.com
Brenda, April 19, 2000 - Hi, I just found ths site because I am just now learning how to get online. I am a 48 year old medically-retired schoolteacher. I have idiopathic dilated cardiomyopathy that was diagnosed in September of 1999. I also am an insulin-dependent diabetic, have panic attacks, mild depression, and chronic stomach pain and nausea, probably hereditary pancreatitus. I had a pacemaker-defibrillator installed in September as an insurance policy. I have been so encouraged by this site because my doctors have led me to believe my EF of 15% can never be any better, and my only hope for survival is a heart transplant. From the messages I have read here, I see that sometimes things do get better after all. Please pray for me, as I am now praying for all of you, and if you know of anyone in my condition who has experienced improvement, please let me know. Thank you. firstname.lastname@example.org
Jon's note: That be me, for one! <g>
Tony, April 19, 2000 - Hello, I'm new to this kind of thing but here goes: I am 54 years old, male, with CHF and an EF of 27%. This has been stable for 4-5 years. I've been able to sing in the choir, volunteer at our zoo and play an occassional round of golf. I started Coreg February 15 and now cannot participate in the aforementioned. I have rearranged my meds and that has helped some. Please tell me, does it get better? I'm beginning to think I made a mistake. Who wants to live longer feeling like this? email@example.com
Pam M, April 19, 2000 - Hello everyone, This is my first post to the board and I hope someone can help me out. I recieved an ICD in January, 2000. I really wasn't for sure it was for me. I actually thought my doctor was being very aggressive and jumping ahead. I never dreamed that I would ever receive a shock but I did on Sunday. It was completely out of the blue. I was reading a book and had felt fine all day. I went to have the device "interrogated" Monday to make sure it had responded appropriately and was not responding to a-fib. It was working correctly. Well, to make a long story shorter, it has been absolutely terrifying for me. I had to call my family doctor today and request something to calm my nerves. I just need to know if someone else who has an ICD has gone through something similar. If so,please let me know your situation and how you handled it. Thanks so much for any info. Pam. firstname.lastname@example.org
Steve, April 19, 2000 - Hi, I just wanted to say thanks to you all who are contributing to this board. I am 42 years old with a 5 year old girl and an 11 year old boy. I have had a rough year or so, and received the diagnosis of CHF in mid-February, 2000. I am not as bad as most of you. My EF is around 40%. I started taking some mineral waters that seemed to be helping a lot, water soluble not collodial as some insist: calcium and magnesium as well as silver and for diabetes: chromium, vanadium and zinc. I know it sounds weird but I feel twice as energetic as prior to taking these minerals. They look and taste like water, not mud. I hope my info can help someone else. I take the medicine too! (Lanoxin, Lasix and some others) email@example.com
Suzy B's April 19 reply to Tony's April 19, 2000 - Hi Tony, I know how you feel about Coreg. I started it last summer and at first I was so tired I couldn't function but my doctor started me at a low dose and each month gradually increased it. I was ready to stop taking it but am glad I didn't now. I feel a whole lot better for it. You must take Coreg with food in your system or else you'll get physically sick. If you take it 2 times a day, split them up not too close together. Also, certain other cardiac meds shouldn't be taken close together, like Coreg and Zestril. Some people just can't tolerate Coreg though so if you feel that bad, call your doctor and tell him how you feel. Don't wait till your next visit. He should know now. I am 46 with CHF and was told I need a transplant but since I stayed with Coreg, I'm now stabilised and my EF is 30%. I was also told not to put too much stock in EF numbers. Some people with high numbers feel worse than those with low numbers. Now what works for one doesn't always work for everyone, so tell your doctor how you are feeling. Good luck, Suzy B. firstname.lastname@example.org
Jon, April 19, 2000 - Howdy-doo everyone, I just wanted to say that it's not inherently dangerous to take ACE inhibitors and beta-blockers together. If it causes your blood pressure to drop too far, of course, split them up. However, I take 40mg Monopril and my Coreg together every morning and don't even notice any side effects. My wife says I'm just too dumb to know any better! :-) Like Suzy said, it's an individual thing and you have to listen to your own body. Jon.
Donna Z, April 19, 2000 - Hello all, I just came back form my three month check up. I had an echo done and the results are the same as when I was diagnosed back in July of 1999. I felt so good I was sure it would improve but it didn't. Also my heart was only beating 42 beats a minute so the transplant doctor has taken me off the 50mg of Coreg and put me on 25mg per day as I was losing beats. She also took me off Lasix and K-dur, and put me on 25mg of Aldactone once a day. I can use Lasix here and there if needed. She suggested I have a VO2 stress test done, which I am trying to get scheduled. We also discussed my going on the transplant list depending on my VO2 result and some other tests. It's hard to believe how good I felt and how bad all my tests were but there is always hope and I have a lot of that. Maybe I'll feel better now that my Coreg was reduced. I felt very tired all the time and just thought it was normal for people with CHF to feel this way. email@example.com
Jan S, April 20, 2000 - Hi all, I went to my cardiologist Monday and I have been feeling depressed and tearful for awhile now, so after some discussion I asked him for an anti-depressent prescription. He prescribed Zoloft and said it would be the best for me with my diagnosis and meds. Now I'm having second thoughts and want some opinions from my "heart peers." I have been diagnosed since January of 1998 and have DCM, CHF and pulmonary restrictive-obstructive disease. My disease was brought on by the radiation I had to my chest and 2 years intensive chemo for the cancer I had in the late 1970s. I give thanks to Jesus Christ for my healing of my cancer but emotionally I'm not dealing as well with this non-curable heart stuff. My current drugs include:
I'm thinking maybe I need just a larger box of tissues and more prayer instead of one more pill. Then again, I asked for this medicine to get me over this "slump" I seem to be in. The largest part of the depression seems to stem from prolonged grief of having to give up working. Thanks for listening. Jan S. Geschuppja@aol.com
Joe S' April 20 reply to Leland Y's April 19, 2000 - Hi Leland, There are bacons with less then 110mg of sodium per two slices and they taste great. I am finding scores of other things I can eat but also scores of others I least suspected that I can't. Maybe it depends on where you live. Farmer John's was one of the first who eliminated MSG, thus cutting down sodium, but I don't know if they are nationwide.
To Tony, I had to stop taking many drugs over the years because of undesirable side effects and like you, I wondered if this was living. Now that I've found the right meds, things are great 90% of the time. Still, don't forget that, as Jon says, we all have "bad days" and some of those days stretch into weeks. Joe S. firstname.lastname@example.org
Jon's April 20 reply to Joe S' April 20, 2000 - Hey Joe, There ain't no bacons like that 'round here! <lol> Please post some more brand names and be as specific as possible on the info, so I can give it to the manager of my local grocery store for his consideration. I'm his personal demon on earth, forcing low sodium items onto the shelves. Jon.
Tim B's April 20 reply to Judy Z's April 15, 2000 - Dear Judy, I haven't been here for a few days due to the fact that I had some very hard days physically. I lost a lot of water and in doing so I depleted my potassium, which in turn caused my heart to go haywire and do more damage than I can afford. This is the third time that I have lost potassium, sodium, and magnesium. I had 33% heart function and then the last 3 times with the loss of minerals, my heart is now down to 18% function. With this and the fact that my heart is so weak, along with the diabetes, I am really walking that thin line of living or dying. Now I make them give me blood tests every 3 days.
You know Judy, you are right that none of this is my fault but I have always felt that if I would have never married my wife, she would have a better life with someone else. I said that to her the other day. Mistake! She stopped everything she was doing and looked me straight in the eyes and said, "Honey, our vows said for sickness and health, good or bad, and I love you for who you are, not what you are. I love you and built my life around you and when someone loves another as much as I love you than there is nothing that I wouln't put up with." Tears were in her eyes and she just made me feel so important to her and then I realized all of a sudden that I would do the same for her. I know that things are not going to be easy for her, but with her determination and the will to keep going, she will do alright. With me feeling this way, it makes things a little better for me as far as how I felt about it before. If it was possible and whatever heaven I have I would be more then happy to give her mine, because she has been my heaven here in this life. What I said just now is only a thought and I know that it is not possible. I believe that the Lord will never give us any more than we can handle and with that alone and the way she is, she will do alright. I hope that my 4 children will be alright also handling my death, but they are going to struggle because I know how they are. I ask The Lord right now to touch them and guide them through it when it happens. With this all said things are a little better for me.
How is everyone here at Jon's Place doing? I will pray for you all and know that God will bless you all and your families. Everyone take care and all have a nice Easter. God bless all and God bless me. Bye! Love In Christ, Tim Brownie. email@example.com
Ruthie A's April 20 reply to Jon's April 19, 2000 - Hi Jon, Regarding ACE inhibitors and beta-blockers, there are those of us who need both to keep their heart down to a dull roar. I had to split my 100 mg of atenolol and my 50 mg of Cozaar by 12 hours in order to keep my blood pressure from bouncing around like a yo-yo. Now it is even and consistent. My heart rate also likes the split since it doesn't bounce around any more either, though not in the same bounces as my BP! <g> But here again comes the theme that regulating all these meds is an individual issue. When in doubt, always check with your doctor. Ruthie. firstname.lastname@example.org
Jon's April 20 reply to Ruthie A's April 19, 2000 - Hiya Ruthie, I just wanted to be sure everyone understood that there is nothing "automatically" dangerous about taking these meds together. As is being discussed on the Loved One's forum, offhand comments can be confusing to those new to CHF and this site, and I am the lucky one who has to nitpick everything to be sure it is clearly understood. I did not mean to discredit any person's personal experience. It is, as has already been mentioned many times, an individual thing. Jon.
Karen K's April 20 reply to Jan S' April 20, 2000 - Hi Jan, For what it's worth, here are my comments regarding your taking an antidepressant: Zoloft is one of the SSRIs. I take Prozac, which is also an SSRI. These are safer than some of the older antidepressants. In fact, from what I understand, some of the tricyclics (Imipramine at high doses, to name one) can actually cause cardiomyopathy. I don't want to start a false rumor but I've seen it more than one place and when I was diagnosed, I was taking 200mg of Imipramine a day. The medication was immediately stopped although my doctor as he walked out of the room said, "And no, your medication didn't cause this." To me that's a moot point.
Prozac has been a wonder drug for me. I tried both Zoloft and Paxil and had side effects that I couldn't tolerate (not heart-related). I made the decision finally that I wanted to try Prozac and it's one of the best decisions I've made. I don't want this post to start another thread about the pros and cons of antidepressants and clinical depression vs. situational depression. If it is at all possible, another thing you might try is exercise (walking works for me). It made a big difference in my emotional state.
Note the difference in my e-mail address. It is now email@example.com
Mike W's April 20 reply to Jon's April 20, 2000 - Hi Jon, Just to give an example of your point about the drug "cocktails," I take 80mg Monopril (ACE inhibitor), 100mg Cozaar (ARB) and 150mg Lotensin (beta-blocker) daily, in large doses, plus the usual 0.25mg Lanoxin and 40mg Lasix daily. I have absolutely no side effects. I understand that I am lucky in this fashion. I have always had a high drug tolerance and have a long psychiatric history, and have taken sometimes massive doses of sometimes even contradictory drugs without ever having a problem. My point is that the drug response of individuals is about as varied as the individuls themselves. I think, aside from diagnosing and human caring, doctors' other most important function is that of the "black art" of medicating his patients. Peace, Mike Wafkowski. firstname.lastname@example.org
Jon's note: You mean doctors are supposed to give "human caring?!" <g>
Tim B's April 20 reply to Pam's April 20, 2000 - Dear Pam, I've had my ICD implant since 1994. I can surely feel what you are going through because when I got my first shock, it was terrible. I don't know how many joules yours is set at, but mine is set to the maximum of 360 per per shock. When mine went off the first time, I was on the couch on the phone. It went off and knocked the phone out of my hand, threw it 15 feet. I ended up off the couch on the floor about 5 feet from where I was lying. It hurt and I saw blue fireballs. After you have the shock, you don't know where you are and it took me 2 hours to come back to normal but I was terrified to get another shock. About 5 months later it went off 3 times in 6 minutes and I went and had it read. The ICD had malfunctioned and was shocking me when I didn't need it. The Lord was with me on this one. A wire had broken so it was replaced.
In 1998 I received 5 shocks in 12 minutes and was fit to be tied. I wanted to find a strong magnet to shut my ICD completely off. My wife refused to help me and they rushed me to the hospital and found that it was giving me legitimate shocks and if I would have messed with it, I would have died. I just had it replaced due to low power and I haven't had a shock since, but I still think about how it feels and I still am uptight about it. Although it is a life saver, we have to go through some pain to live with this device. Still, it works.
Hang in there, Pam. I know it's hard but remember that when it goes off, it has saved your life! Let the Lord take your hand and give you the strength you need. Do take your pills that help you settle your fears. Everyone, happy Easter and may God bless all of us. Tim Brownie. email@example.com
Ginger's April 21 reply to Pam's April 20, 2000 - Hi, If you go to Jon's Links page you will find a link to a site called Heartbeats run by a woman named Lee, who has an ICD. Her whole site is pretty much based on it. She has a forum like this one too. It may help you to talk with people, mainly women there, who have one. :-) Hugs, Ginger. firstname.lastname@example.org
Maureen M, April 22, 2000 - Hi, I have been wanting to update you about my Muscular Dystrophy saga. It had a happy ending after all. All the worrying was for nothing. The muscle biopsy was negative. We are still trying to figure out my weakness but since my EF dropped again for the first time in 4 years to 25-30%, maybe the increased weakness is due to the decreased function of my heart.
At Christmas my dog Bongo got fatally ill, and I had to put him down. I thought I was going to die too, I was so incredibly sad. I missed him more than I thought was possible. A month later I adopted another Dalmatian, 6 weeks old. Her name is Lilly and if we didn't know better, we would think she was Bongo reincarnated. I love her tremendously and am thankful each day to wake up to her. It is amazing how the heart still needs to love in spite of loss.
Jon and anyone else out there, please offer me advice on how to survive parenthood through the late teen years. My children were such a wonderful delight when I first joined this forum. Now they are 19 and 17, and I hardly recognize them as mine. They are moody, indecisive, and are driving me all but nuts. All of a sudden they know everything and my husband and I are apparently completely ignorant. They make their lives so much more difficult by not applying good, sound advice. You'd think they would get it after awhile. I could really use some words of wisdom on the subject from those who have been there, done that. Peace and love to all, Maureen. email@example.com
Beverly C's April 22 reply to Jan S' April 20, 2000 - Hi Jan, Take your Zoloft. Would you rather spend what is left of your life smiling or crying? You make the quality of your life and everyone around you better. I want to leave good memories with everyone. Zoloft makes my life tolerable. There are still days or times that you'll cry, but much less. Beverly. firstname.lastname@example.org
Joe S' April 22 reply to Jon's April 20, 2000 - Hi Jon, I went and talked with my butcher yesterday and you are right that most of the bacons and other stuff are west coast only, except maybe one. It's hard for me to understand. One product you may be able to get is Royale bacon, owned by a company called Gainers in Canada. They have only 120mg of sodium per two slices. Another is Bar S Virginia Reel Brand which even in their thick bacon has only 210 mg per 2 slices and it tastes great. The package says made in Oklahoma but no town. Again I only assumed what was out here was everywhere else. Almost all of Lay's potato chips have less then 125mg for 15 chips and they sure taste salty. There are also many products from Farmer John that are low in sodium but I doubt if you can get it. Joe S. email@example.com
Judy Z, April 22, 2000 - Jon's note - sestamibi is the same thing as the technetium-99m (Tc-99m) referred to on my MUGA page Hi, I went to my cardiologist yesterday for a sestamibi stress test. I had my first echo in about a year, five weeks ago. That had shown a marked decrease in heart function in spite of being on Coreg and Monopril. The two earlier echos had also shown some decrease in function from the first to the second. The sestamibi test I had when first diagnosed had not shown as great a problem as the echos but my doc wasn't that concerned with that. He wanted to get me on Coreg and see how that worked. After my echo 4 weeks ago, we were all very shocked. I told my doc that I really hadn't been feeling too badly, just tired after hard days. Because of that but with a little skepticism, he decided on another sestambi and talked of sending me to UW Madison where they evaluate for transplant.
Well, happy but confused surprise: the sestambi shows me in better shape then when I was first diagnosed! My doc is very confused and wants to meet with all the technicians who have run the various tests. I guess he hasn't seen this before and it is very puzzling as to what to believe. I tend to believe the last sestambi test because it seemed more complete and it is more optimistic. At any rate, the referral is on hold until he meets with the rest of the team. He also wants them to rerun a test, for free if he can talk them into it. Has anyone else had anything similar, with 2 types of tests giving very different results? If the sestambi is right, my doc feels I wouldn't need to be on the transplant list for 5 years at least. Thanks for all your help. firstname.lastname@example.org
Jon's April 22 reply to Judy Z's April 22, 2000 - Hi Judy, I really can't say too much because you didn't tell us what the different test results were so we don't know the scope of the difference. I have never heard of a doctor deciding a patient's need for transplant based on this type of test. The Vo2max is considered the gold standard for heart transplant consideration. (maybe you had one of these, too?) Sestamibi is one name for a radioactive tracer used in several tests, including SPECT-scans, stress echocardiograms, and MUGAs. Was your "sestamibi" test a MUGA or a different imaging test? Did it involve actual exercise or did a chemical such as persantine or dobutamine injected into you "simulate" the effects of exercise? Did you get any numbers such as EF or stroke volume? If you can give us some more info, maybe we can give better comment. Test results can vary, depending on the type of tests being compared to each other. Jon.
Robin L, April 22, 2000 - Hello, I have looked every where to find an answer to this question and I am hopeful that someone can answer me. I have just had a 2 week bout with an adenovirus. When I looked it up I found that it is one of the viruses that can cause heart problems. I have IDCM and want to know if there is a definite higher risk of myocarditis or of losing heart function when you already have a weakened heart and regurgitating valves? The first week of the illness, I just felt as tho I had been run over by a truck. My whole body was weak and sore, and I felt like a lump of playdough. <g> Then I came down with the symptoms of high fever and upper respiratory infection for 6 days. I had one day of no fever, then my 3 year old daughter got it. She had it for 7 days and now my 8 year old has it. I am very tired. I know a lot of my current tiredness and weakness is due to caring for my children, but the question in the back of my mind is, "Could this illness have weakened my heart and should I request another echo?" If anyone out there can give me some answers before my next cardio visit on Monday, I will be grateful. Also, if it did affect my heart, would I be having CHF symptoms and still flu-like? Thank you all and God bless. Robin Lynn. email@example.com
Jean C's April 22 reply to Jon's April 22, 2000 - Hi Jon, "Lower Sodium Bacon." That's what they call it and it also says a serving size is 2 microwave slices. It has 210mg sodium in a serving and it is called "Bar S" and is available in the midwest at Price Chopper stores. The package caused me to wonder if food values are different depending on how you cook it. Being basically very lazy, microwaving is fine with me; Anything to get out of scrubbing pans. Happy spring to everyone. firstname.lastname@example.org
Jon's April 22 reply to Jean C's April 22, 2000 - Hi Jean, Thanks. :-) I'll ask my Hy-Vee guy if they carry it. Price Chopper is too hard on me. At Hy-Vee, they unload my cart for me, bag it for me and load it in my car for me, as well as running around the store getting stuff I forgot after I am already checking out. Gotta love it. Jon.
Martine S, April 22, 2000 - Hi, My life changed on the 7th of April. I was rushed to the ER and into ICU. A few days later I was diagnosed with cardiomyopathy. I am scared. I don't know anybody that knows anything about that disease and I wish to talk to someone. I am a little depressed by the whole thing. I am a diabetic also. I am lost also by the diet, I know how to look for fat and sugar or carbo but not for sodium. Please help. Martine. email@example.com
Bill D's April 23 reply to Martine S' April 22, 2000 - Hi Martine, You've come to the right place. Welcome to Jon's Place. We're glad to have you aboard our leaky old boat. <g> The more we learn about CHF, the longer we can live with it. The best place to learn is right here. Click on Site Index, Click Here at the top of this page. You might start your education by reading The Manual. Some of us print it out for folks who don't understand. You'll be able to find answers to all of your questions, including what you need to ask your doctors. Many of us have diabetes along with cardiomyopathy. They seem to go hand in hand. Click here for a list showing folks who have both, like you do. Bill D. firstname.lastname@example.org
Eric's April 23 reply to Martine S' April 22, 2000 - Hi Martine, I had a similar experience in July of 1998. The ER, the ICU, the diagnosis of ICM, and an EF in the low 20s, and the shock that I was no longer going to live forever. I was scared and I knew very little about the various cardiomyopathy diseases but it gets better. I think it can start with your visit here to Jon's Place and this message board. Ask questions! Read The Manual that has been put together by all the experiences of everyone and Jon's research. Most of all, know that you are not alone and that today the quality of life can get better with the right meds. Today, my EF is approaching 60 and I'm out being active and happy. I take my meds regularly, see my cardiologists regularly and watch what I eat and drink. You can too! email@example.com
Rieale, April 23, 2000 - Greetings again all, My question is whether it is normal to have chest pain when you have severe dilated cardiomyopathy. It is not a sharp pain nor does it go into my shoulders or arms, but it is slightly dull. I've heard of this in cases of blocked arteries but I have no blockage. My problems have been chalked up to a probable virus attack and until the last day or so I never had chest pains. Is this just a normal CHF thing or should I be on the phone to Cleveland Clinic tomorrow? Thanks in advance. Rieale@aol.com
Murph's April 23 reply to Jon's April 20, 2000 - Hi Jon, Another bacon in the Midwest is "Farmland Lower Sodium Bacon." 190mg of sodium for 2 slices, and it tastes great! firstname.lastname@example.org
Jon's note: Gonna be having breakfast for dinner <g>
Jon's April 23 reply to Rieale's April 23, 2000 - Hi Rieale, It's not unusual for a CHFer with no blockages to have angina. It is a dull pain or discomfort that may also "squeeze" your chest somewhat, making breathing more difficult. It often results from exertion. I get it myself. None the less, call your doctor Monday and be sure. Jon.
Joe S, April 24, 2000 - Hi, Most of you probably know this, but it was a new revelation to me. The other night my visiting daughter-in-law said she heard me moaning and gasping for breath in the middle of the night. When I woke up I felt I had reverted back to 2 years ago. I went back over what I had eaten and I feel very strongly that it was the ice cream I ate the night before. It stands to reason that congestive heart failure's key word is congestion and a lot of us were first diagnosed with bronchitis, emphysema, etc and that there is a connection here. They tell everyone with other forms of congestion to avoid milk, ice cream and other congestive foods, why not us? The dietician who worked with me never mentioned this. Doe anyone have any opinions on this? Joe S. email@example.com
Jon's April 24 reply to Joe S' April 24, 2000 - Hi Joe, I have a milk intolerance so I can sympathize with your problems if that is also your situation. However, I very strongly believe that the only reason many of us were misdiagnosed with respiratory illness is that our doctors did exactly that - misdiagnosed us. CHF causes lung congestion, so most doctors look for respiratory illness first in such patients, completely overlooking our heart problems. Unfortunately, meds for those respiratory problems - especially asthma meds - can make CHF worse, so we're usually really sick by the time they get it right. Those who have real respiratory illness in addition to CHF get the worst of it, since it usually takes doctors even longer to spot the heart trouble and it is harder to treat. So while some people will have a respiratory illness and CHF, I do not think there is a solid connection to be made in general between the two.
Since CHF affects our primary bodily system - the pump at our core, so to speak - our symptoms can be widely varied and it's hard to pinpoint a cause for many of them. We have to beware of always running to a favorite scapegoat, whether it be diet, physically overdoing, meds, lack of vitamin Z or mineral X or whatever. The fact is are that we can have a serious "episode" or a bad day or even a bad week for no discernible reason at all. It's just because our central pumping system is weak and erratic. This makes it even more important to write down every single day everything about our body's reactions if we think we have a consistent problem such as an allergy. Otherwise, the connection can never be certain nor can the next episode be avoided for sure.
I'd say to write down your reactions to everything you eat - everything - for a couple of months and do not overlook other factors in favor of the one you think is causing you the problem. If you overlook something else because you are "sure" it's diet, you may miss another cause or problem entirely. Unfortunately, that means keeping track of when you take what meds and how that timing relates to your meals and sleep and exercise, and so on. Jon.
Jana B's April 24 reply to Maureen M's April 22, 2000 - Hi Maureen, I have 5 kids; 4 are teenagers: ages 7, 14, 17, 19, 20 (I still consider him a teenager). I don't think there is anything I haven't gone through with them! Well, knock on wood, there are actually some things we haven't experienced yet. <lol> Still, we have a grandbaby, wrecked cars, police coming out, school actups, drop outs, screwing up first year of college - we have seen a lot but they are all either on honor roll or in GATE. So I guess they aren't too bad, just teenagers! If you ever want to talk or vent, I am here. :-) Jana Byers. JByers4u@aol.com
Jon's note: GATE?
Suzy B's April 24 reply to Rieale's April 23, 2000 - Hi Rieale, I agree with Jon about CHFers having chest pain. I get it myself frequently. I don't have any blockages either so it is scary when it happens but I checked with my cardiologist and he said not to worry, that it is from the cardiomyopathy. I find that mine comes not only from exertion but also if I am under some additional stress so I really try to keep stress to a minimum whenever possible. But check with your doctor anyway for peace of mind. Good luck, Suzy B. firstname.lastname@example.org
Judy Wasson, April 25, 2000 - Hi everyone, It's been several months since I've written so I need to fill you in. I'm 49 years old, female, and since March 11 of 1999 have had 6 heart caths and 4 stents. I feel that I was misdiagnosed for so long that it caused irreversible damage that has now led me to CHF. The problem I'm having is my cholesterol lowering drug Zocor. It makes me really sleepy and I have nightmares. I have tried Lipitor and couldn't tolerate it. Is there anything else that can be used to drop my high numbers besides drugs? I also feel tired all the time and have no energy. My meds are 40mg Prozac, 75mg Plavix, 20mEq K-dur, 40mg Zocor, 60mg Imdur, 50mg metoprolol, 80mg Lasix, 50mg Aldactone, 0.25mg Synthroid and 25mg Vioxx. I also take 1000mg vitamin C and E. email@example.com
Jeanette's April 25 reply to Martine S' April 22, 2000 - Hi Martine, Welcome to Jon's Place. Like you, I have cardiomyopathy, which was diagnosed in June of 1998. I understand you being frightened. You are not alone. Just try to step back and take a deep breath for a moment and thank God you are still here. My EF is 20-25% and won't get much better. So I know what you are going through. In fact, most of us here can understand. Take one day at a time and look to God for guidance. He is here as well as us. Most of us who have dilated or idiopathic dilated cardiomyopathy don't have a clue how we were so unfortunate in getting this disease. Most doctors say that a viral infection was the cause. In my case they feel the flu hit my heart. You have come to the right place for support and information. Take a good look around the place. There is a lot of information that will help you cope and put you in the right direction to getting back on your feet, so to speak, and may even calm some of your fears. I hope you will feel at home here and I hope we have helped you out. God bless, Jeanette. firstname.lastname@example.org
Jeanette's April 25 reply to Jan S' April 20, 2000 - Hi Jan, I know what you are going through. I had been on 150mg Zoloft a day for 6 months but it wasn't working. I was very depressed and crying all the time. I couldn't function normally. My primary doc put me on Effexor instead but it was too strong and I finally decided not to take any more. Eventually I came to the conclusion that I was now feeling much better and said fooey to the drugs. This is a personal decision you have to make for yourself: Is the depression worse than the cure? I felt the cure was worse than the depression itself. Only you can decide if it will work. Keep a positive attitude and stay close-knit with God. He can help you more than the drugs, but sometimes you need the drugs to help as well. I am on enough of them to know they go hand in hand. Zoloft is a good drug and it has helped many of my friends who have DCM and a bout of depression. Make sure the doctor knows what you're doing if you decide to go off it. If it doesn't work, there are many others that might. Take care and good luck. If you want to know more about Zoloft and side effects, just ask. God bless, Jeanette. email@example.com
Jamie S, April 25, 2000 - Hi, I had 4 MUGAs within a 13 month period and I was just wondering if there is any chance of problems from the stuff they inject for that test? Just your basic hypochondria setting in. :-) Thanks in advance, Jamie. JamieDan@prodigy.net
Jean, April 25, 2000 - Hi, Does anyone know of a web site where I can check on the prices of medications such as Coreg and Zestril? firstname.lastname@example.org
Neil, April 25, 2000 - Dear Jon and all, This week I came to visit my father in New Mexico. We both want to take this opportunity to write and express our gratitude to you and the other people at this site who have been so kind and useful to us over the last 3 years. The ACE inhibitor, Coreg and new pacemaker have contributed a great deal to my health. My ejection fraction went from 16% to 34%. Through this web site I learned that my health could improve. We want to thank you for having all this good material on CHF that has been so helpful in easing my life and improving my health in a major way. We wish you well and will definitely keep in touch with your site. Neil and Helena. email@example.com
Renee's April 25 reply to Jan S' April 20, 2000 - Hi Jan, I also had difficulty with depression. At first I seemed to be handling things well. I was really sick and didn't care. After I began to feel better, my depression got worse until I didn't even feel like doing any of my favorite things, even the ones I could still do! I have been taking zoloft for 3 years with minimal side effects and it has really helped. I had a little trouble getting the right dose but have been fine ever since I got it right. I also had second thoughts about taking it, especially when the initial dose was too high for me. I had always thought that antidepressants were only for those people who couldn't handle their problems and I had always been a strong person, so I shouldn't need them. Well, handling this type of illness takes all the help we can get! It affects all aspects of your life and everything changes: the meds, the symptoms, diet, exercise, work, and everyday activities. When you stop to think about it, that's more than anyone should have to handle all at once. Try the zoloft. If it doesn't help, try something else. Why suffer if there's something that can help you? You may not need it forever, just long enough to get you through this time. There are many very good antidepressants that could help you. A good book to read about antidepressants is, "When Words Are Not Enough" by Valerie Raskin, MD. She talks about many different antidepressants, their side effects, and what problems they can help. It changed my thinking about taking them. Good luck. I'm praying for you. Renee M. Auntonay@prodigy.net
Ruthie A, April 25, 2000 - Hi, I got to thinking the other day that it seems so long between technological breakthroughs and that some of us won't see the fruit of current endeavors, some because of more serious CHF and some just because of older age. Today changed that thinking. We received a box in the mail today from my in-laws containing a lot of family photos and memorabilia. Among the news clippings were a group of articles about my father-in-law receiving the very first ever ablation. This took place in late April, 1981, at the University of California at San Francisco Medical Center by a Dr. Sheinman. My father-in-law suffered from a-fib and previous to this time, the only way to treat it was through open-heart surgery to physically cut the bundle of HIS where the electrical impulses originate. Dad was a poor surgical candidate so the docs got permission to try this new procedure that had only been done on dogs. They were hoping that, if it was successful, this procedure would eventually lead to treatment of other types of arrhythmias. Do you all realize that was only 19 years ago? Look at how much has been achieved since then! How much life-giving hope has been given to countless people in those few years?! What is to come in the future, I wonder? And how short is that future? We live in amazing days, my friends. Let us never lose hope. Ruthie A. firstname.lastname@example.org
Suzy B's April 25 reply to Jean's April 25, 2000 - Hi, About web sites for drug prices, the place I got info from was www.drugstore.com/. They give both generic and brand name prices. I hope this helps. Suzy B. email@example.com
Lynn M's April 25 reply to Jon's April 23, 2000 - Hi Jon, This is my first post here, though I've been lurking awhile. I have CHF with an EF of 24% as the result of CAD, with 2 MIs that I was hospitalized for and an additional number of infarcts from silent MIs. Anyway, it really helped me a lot to read your reply to Rieale saying that angina can result from CHF itself. My angina has been worsening in the past few weeks and I had begun worrying if I had yet another blockage. The problem is that I've already had 2 CABGs and after the second one, which took 10 hours due to all the scar tissue from the first one, they said, "No more CABGs." Also, having had 8 cardiac caths, including 3 angioplasties, I've been told that I've had too many caths and the arteries they have to pass the catheters through are becoming fibrotic to the point where it's difficult to pass the catheters. So, I've been told no more caths. So having had all revascularization procedures ruled out, the angina had really been worrying me until I read that my CHF could be causing it. Thank you! Of course, that means that my CHF is acting up, with today being a class 4 instead of a class 3b day, but that's another matter. Lynn. firstname.lastname@example.org
Jon, April 25, 2000 - Hi, Since I was totally exhausted after seeing my CHF doc yesterday, I wandered over to WDG and learned frames, and framed my site at truepath. So those of you who long for that nav-guide on the left as you surf, can now access my site that way through (removed). However, since I use margins on all my pages, unless you run a fairtly high resolution, you may not like the result.
Lynn, I hate to rain on anyone's parade but in your case, angina may be more likely due to encroaching CAD than CHF. Then again, maybe not. I have no way to know. Jon.
Susie O, April 25, 2000 - Hi everyone, Hey Jon, here is another bacon for you. Its called SHK (Seven Hungry Kids) Foods, Inc. It is fully cooked and just requires reheating. There is 200mg sodium for 3 slices and 70 calories. I think we found this at the local Walmart Supercenter but the company is in Madison, Wisconsin. (800) 998-1006. Bacon and eggs sound good for supper to me too. Have a good one. email@example.com
Jon's April 25 reply to Susie O's April 25, 2000 - Thanks! If anyone ever wants to start a web site but doesn't know what to put on it, we could sure use a clearinghouse for information on available low sodium foods listed by geography. I'd set up free forms for you, just to get you started! Jon.
Gus R's April 25 reply to Jon's April 25, 2000 - Hi Jon, The frames look fine at 800 x 600 resolution. I never have decided if I like frames or not, but for those with short memories like me, and newbies, this gives one a better idea of what all you have here. I know you have "Index" in big bold letters at the top of the non-frame version of The Beat Goes On, but Indexes are about like directions in that they are mostly for wimps. :-) Best wishes, Gus R. firstname.lastname@example.org
Jon's April 25 reply to Gus R's April 25, 2000 - Hiya Gus, Actually, I always use the Java applet at the bottom of my pages when I navigate my own site for some reason. <g> Jon.
Claudia, April 25, 2000 - Hi, To revisit bacon once again: Oscar Mayer, Low Sodium bacon has 170mg of salt for 2 slices and is the lowest I have found. I also take an anti-depressant called Celexa and it seems to work great, with little to no side effects for me. I had my first echocardiogram since diagnosis. My EF has gone from 15% to 25%, and my heart has shrunk to near-normal size, and I am feeling very well, and much more relaxed. I hope everyone is having good days! God bless, Claudia. CMSchm@aol.com
Emily N, April 25, 2000 - Hi, Can anyone recommend a CHF specialist in the Orlando, Florida area? EmilyHN@aol.com
Jean, April 25, 2000 - Thanks so much to Gus R and Suzy B for sending the information about web sites to find drug prices. email@example.com
Virginia P's April 25 reply to Lynn's April 25, 2000 - Hi Lynn, The test my cardiologist uses on me to check the arteries before they do a heart catheter is the PET (Positron Emission Tomography) scan. It is a procedure where they use a radioactive die, putting the system through stress, "simulating" the effects of exercise. The procedure takes about 45 minutes. If you would like to contact me via e-mail, please feel free to do so. In fact, I had the procedure yesterday. Virginia Pauline. firstname.lastname@example.org
Renee M's April 26 reply to Jamie S' April 25, 2000 - Hi Jamie, I used to work as a Nuclear Med Tech and did MUGA scans for a living. There are very few, if any, problems that result from the drug used for the test. Unless you have an allergy to the med and that is rare, you will have no problems. The drug used is a radioactive material, but the radiation dose is so low that it's like having a chest x-ray. The drug stays in your body such a short time that you can't even detect it by the next day. Even having 4 tests in 13 months gives you a very small radiation dose, so relax. If you haven't had a problem yet, you probably won't. I hope this helps. Renee M. Auntonay@prodigy.net
Marc S, April 26, 2000 - Hello all, I must have missed a mailing or something, as my bio is gone. Anyway, I wanted to report a temporary success story. A recent MUGA showed my EF up to 51%, so I'm only taking Coreg and Zestril now; no Lanoxin, no Coumadin, no Lasix, and, thankfully no Aldactone. Man, I started growing boobs and had no sex drive: quite a pleasant experience. <lol> Anyway, I'm glad to see so many people continue to utilize this resource and gain strength from each other. Praise God for the gift of life, one day at a time. Love to everyone, Marc. email@example.com
Jon's April 26 reply to Marc S' April 26, 2000 - Hiya Marc, I sent a request for updates out to everyone who had a bio. If the e-mail address bounced and I did not have a newer one on my list, I pretty much had to take their bio down. The bios aren't much good if no one can contact the person involved and apparently, a lot of people either do not update their e-mail address when it changes or I have forgotten to make the change. I can only hope this isn't ruining the effectiveness of the Me Too! pages as well, although when I change a bio address I change that one too, if it exists. If you would like your bio back up, just let me know what e-mail address you would like placed on it (I save the ones I take down to CD). I'll be sending out another round of e-mails soon to everyone whose e-mail address did not bounce but who hasn't answered in the 2 weeks since I sent the messages. Jon.
Ray, April 26, 2000 - Hi, This is my first time visiting this site. I'm a 40 year old single white male, and am concerned I may be suffering from CHF. I've been treated for persistent congestion by more than one MD over the last year. I've been told I suffer from allergies and have been prescribed Allegra and Nasacort, which failed to relieve my symptoms. The most annoying is a persistent cough and the inability to stop continuous fluid disharge from my throat and nose. I've suffered from chronic low back pain for approximately 12 years and had a fusion of my lumbar vertebrae L4-5 three years ago. The surgery failed to relieve my pain and I have gradually become less active. I have maintained full-time employment as an electronics technician except 6 months after back surgery for the last 7 years; mostly sedentary work. I believe I also have other symptoms of CHF, such as shortness of breath, fatigue, occasional to frequent lightheadedness, heartburn and sleep difficulties. The stress and worry is starting to overwhelm me. Any guidance or replies are welcomed. Thanks. firstname.lastname@example.org
Joe S' April 26 reply to Claudia's April 26, 2000 - Hi, Don't forget those potato chips I told you about that have only 120mg of sodium per 15 chips for those who crave salt. Joe S. email@example.com
Judy S, April 26, 2000 - Hi, This is in reply to posts concerning depression. I also felt very depressed and lethargic for a long time. The doc finally check my thyroid (including TSH) and found my TSH to be very high, which indicates a lack of thyroid. I was put on synthroid, which made all the difference in the world. As we all know, everyone is different, but a thyroid check is relatively inexpensive and only involves a blood test. It may be helpful. Best wishes to all, Judy. firstname.lastname@example.org
Karen K, April 26, 2000 - Hi All, I'm doing very well inspite of my January hospital stay. My meds have changed so I should update my bio. My e-mail address has also changed. It is now email@example.com. I'm connected to a digital cable and no longer use a phone line. My husband and I now have networked computers. I don't know if that's a good or a bad thing yet. Karen. firstname.lastname@example.org
Linda M, April 26, 2000 - Hi, I haven't posted in awhile but have kept up on reading all the notes. Six months ago I had an echo and stress echo done and I had no discernable blockages, and an EF in the 60s. I was feeling very lucky that my life had returned to normal with the exception of watching my diet and taking my meds on a regular basis, and I haven't felt the need to post. That is, until now. A recent blood test showed my cholesterol high so I was started on Pravachol. About 4 weeks after starting it, I started having night sweats. This lasted for a week and is now happening about once a week. Is this a common side effect of this drug or is something else going on? I have an echo scheduled for May 17. Linda. Contessa@prodigy.net
Ginger, April 26, 2000 - Hi, I want to thank everyone here for their support and prayers during this hard time my family has been through. My brother came through his surgery and although it will mean a very different sort of life for him, the surgery did do what it was meant to do, which was to prolong his life. We do not have the pathology reports yet but I feel very optimistic about them. Thanks to you all and God, I refuse to dwell on the what if's and how many years, etc. Most of us got told 3 to 5 and we are still here! :-) I would not have made it through all I have the last few months without your support and prayers. So I had to thank all of you and this was the easiest way to do it! I love you all and keep every one of you in my prayers! Hugs, Ginger. email@example.com
Jamie S' April 26 reply to Renee M's April 26, 2000 - Thanks Renee, It helps. Sometimes a thought gets into my head and I just can't shake it. Thanks for helping me shake it. Jamie. JamieDan@prodigy.net
Milt's April 26 reply to Joe S' April 26, 2000 - Hi, To those who love potato chips, in Michigan there is a No Salt Added chip made by Better Maid. These have 10mg of salt per ounce and 160 calories with 9 grams of fat total. This adds up to 40mg of salt per bag. I also like unsalted roasted peanuts by Planters. firstname.lastname@example.org
Bill D's April 26 reply to Ray's April 26, 2000 - Hi Ray, I haven't any idea if you are suffering from CHF. Most of us don't have persistent coughs, continuous fluid disharge from the throat and nose, heartburn, lightheadedness and sleep difficulties. We do have shortness of breath and fatigue. The only way you could find out if you have CHF is to go to a cardiologist and complete some of his tests. Ray, I also had problems with my lower back. I had 3 vertebrae fused together and it didn't cure the problem. Back then I weighed 250 pounds and stood 6' 2". It wasn't until I got CHF and lost 60 pounds that my back problem went away for good. I suspect you're overweight like I was! <g> Bill D. email@example.com
Rieale's April 26 reply to Joe S' April 26, 2000 - Hi, Something that has cured a true salt craving is Snyder's Potato Chips. They only have 85mg of sodium per 21 chips and are the saltiest thing you can find. Just make sure that it doesn't increase your fluid intake. Rieale@aol.com
Tony, April 27, 2000 - Hello Folks, I wrote April 19 about: is Coreg worth it? I still don't know, but received several nice e-mails and I didn't respond to all of them. Thanks to all! I started out on 3.125mg Coreg twice a day for 2 weeks. It was a non-event. My dose was doubled to 6.25mg twice a day for 2 weeks. I started to drag at the end but doubled again to 12.5mg twice a day for 2 weeks and my BP was so low it didn't even register. My doctor and I decided to back off to 3.125mg in the morning and 6.25mg before bed. In addition, I spread my other BP lowering meds throughout the day. I am feeling like a human again. My other meds are:
I think I'll take a little more time and be less aggressive when increasing the Coreg in the future. Any comments, yay or nay? firstname.lastname@example.org
Jon's note: I'd say whatever works for you :-)
Ray's April 27 reply to Bill D's April 26, 2000 - Hi Bill, Thanks for posting to my first letter. Your suspicions are right as far as weight. Since you've had back problems yourself, you know how much of a struggle it can be maintaining an ideal weight. I'm somewhat overweight at 5'7" and 190lbs but am a reformed smoker (7 years), and have made fairly good efforts to keep in shape by walking. I stumbled onto this site last night while I was surfing for information on my persistent congestion and I did find symptoms of CHF to include persistent coughing as a common sign, especially coughing that regularly produces mucus or pink, blood-tinged sputum. Some people develop raspy breathing or wheezing.
I have never had congestion lasting this long before (about a year) without explanation and so far it hasn't responded to treatment by a primary care MD and a pulmonary specialist. I've had allergies before, but never anything that didn't relent at some point in time. The difference this time seems to be that my energy resources are being drained from simply blowing my nose and constantly clearing my throat. The distressing part is that I can't keep it clear. It is virtually continuous around the clock, with little relief. The medication (Allegra) was supposed to "dry it up" from what I understand. I've taken the meds as prescribed, but with no improvement. I guess ultimately I need to follow up with a cardiologist or other specialist as you suggested. Thanks, Ray. email@example.com
Claire, April 27, 2000 - Hi everyone, My name is Claire and I am a 37 year old female with cardiomyopathy (stiff LV, poor diastolic function), hypertension, MVP, aortic valve regurgitation and CHF. I am a critical care RN and worked in cardiac ICU for years; how's that for irony? I can no longer work but have a lawyer and am going through the amazing process of trying to get Disability. He assures me I will get it and that it just takes time. In November of 1997 I contracted a severe mycoplasma infection and pneumonia. It caused cardiomyopathy, stiffening of my left ventricle and an autoimmune reaction that caused scarring of my myocardium. I have a decent EF but poor diastolic function. I just recently got a computer and found Jon's Place. I think it's great! is anyone out there with the same problem? firstname.lastname@example.org
Jan S, April 27, 2000 - Hi, Thanks to all the caring peers who responded to my April 20 post on being in a slump and debating taking an antidepressent. It helped just to put it in words to my doctor and all of you at this site. At that same visit my cardiologist, on recommendations from my electrophysiologist, changed my heart-related meds. Last December I had been on 300mg cardizem CD. I was tapered off that to 30mg lotensin (ACE inhibitor). I wound up having my pacer record out-of-range numbers of atrial episodes. That last visit, I was changed to 20mg lotensin and 60mg Cardizem. I started feeling better almost immediately. No more tears! I started the Zoloft but it made me nauseated and I stopped. I debated with myself every day and 2 days ago I started again with half the recommended dose and will see how I do. In the end, we each have to make our own decision but for me it is helpful to be able to bounce the process off those who have "been there - done that." Jan S. Geschuppja@aol.com
Frank S' April 27 reply to Ray's April 27, 2000 - Dear Ray, If I had the symptoms which you talk about, I would seriously consider taking a therapeutic dose of corticosteroids and my guess is that all of your "allergic" symptoms would go away. It sounds like you could be suffering from chronic rhinitis - bronchitis. I did not read anything which would indicate a valid reason for having CHF, but perhaps I missed something. Frank Smith. email@example.com
Gus R's April 27 reply to Claire's April 27, 2000 - Hi Claire, Yep, there's more of us out here. We come in bunches, like grapes. :-) Being a CC RN you know far more than I do on the medical side of your problems, but I may be a half step ahead of you with the SSA. You are quite right that SS Disability is an amazing process; not the way I'd phrase it, but right. Jon has a lot of information on this subject and his "What do I need To File a Claim?" is very good, especially the phrase beginning "John Doe cannot work at any..." I wrote it out for my doc for my last SSD Review, and he copied it verbatim and signed it for me. That or something else worked, because my disability was renewed the first try. My original claim was rejected twice, I was sent to a shrink, and on and on before it was finally approved.
If you do a "Social Security" search in The Archives you will find many posts on the subject. It comes up here quite often and though most of us have some vague idea how it works, there really is no rhyme or reason to it that I can find. I'm a pro-lawyer filer myself, but there are many who consider it a waste of money and for some it is approved so easily that they are right. At the time I applied, I had been hit with so many things so quickly, I don't think I could have completed the process without a lawyer. I'll close by stealing a quote from someone here (Bill D?) "Hi, and welcome to our leaky old boat." Best wishes, Gus R. firstname.lastname@example.org
Joe S' April 27 reply to Marc S' April 26, 2000 - Hi Marc, You say big boobs and lack of sex drive is a bad thing, huh? Just kidding. I'm going to the doc next week for some more Viagra. (just kidding again)
To Ray S, One of my biggest symptoms of CHF was constantly coughing up phlegm and continuous sweating, but none of it was bloody. Be careful with that. Joe S. email@example.com
Jon, April 29, 2000 - Hi everyone, I've been playing around with the recipe section of Kitchen Corner and managed to add some recipes along the way (more to come). Please let me know if I made it worse rather than better. <g> Jon.
Kim's April 29 reply to Ray's April 26, 2000 - Hi Ray, I suffered terribly from one sinus infection after another too. I can relate to the drainage down the back of the throat, the constant clearing of throat, etc. I felt like something was going on with me for quite some time. I kept going back to the doctors time after time complaining of fatigue, literally not being able to stay awake at work and having no energy to do anything. I told them about my shortness of breath and how it was worsening.
I saw family practice docs, allergists, etc. Finally over Christmas of 1998, the doctor ordered a chest x-ray because of a cough I had developed. The chest x-ray showed an enlarged heart that the radiologist thought should be checked into for CHF. My docs poo-poo'd it and they treated me for pneumonia and bronchitis, filling me full of antibiotics and prednisone and inhalers. In February of 1999 they decided to do a repeat chest x-ray to see how I was improving and then finally scheduled me for an echo, then a heart cath, and I was diagnosed with CHF.
My advice to you is to be persistent. It's frustrating with all of today's technology and all but I believe in second opinions and having simple tests done to rule out diseases like CHF, even for peace of mind. When I was diagnosed with CHF, I felt like I could've fallen through the doc's office floor! Still, I was relieved to finally know what was going on with me so I could begin to take necessary steps toward trying to feel better. By the way, since going on my heart meds - knock on wood - I haven't had any sinus or allergy problems, no nagging cough, no drainage down my throat, etc. I don't know if it's coincidence or what. My thoughts and prayers are with you and I hope you find some answers soon. firstname.lastname@example.org
Ray's April 29 reply to Frank S' April 27, 2000 - Hi Frank, Been there, done that applies here. The pulmonary specialist I've seen gave me a shot of corticosteroids on 2 different occasions within a one month period; No help at all, in fact I think it made me sick, dizzy and nauseous the second time, although I never reported it. The reason is primarily fatigue associated with persistent cough and congestion.
To Joe S, I also have experienced continuous sweating and sometimes wake up drenched in the night. The pulmonary specialist said it was not uncommon to cough up blood with allergies because some of the blood vessels in your throat can be injured with the strain of coughing. He said it is also not uncommon to cough up a lot of blood at times. Man, I'm only 40. This can't be happening. Ray. email@example.com
Kathy, April 29, 2000 - Hi, I need help. Can anyone tell me in simple terms the relationship between diuretics, potassium and the intake of liquids? Also, does anyone know of any any low sodium dill pickles? I really have a craving for them all the time. Thank you! firstname.lastname@example.org
Ginger's April 29 reply to Claire's April 27, 2000 - Hi Claire, I have CM, hypertension and MVP. A lot of us here do. If you look at Jon's Me Too! page, which is a page of people with multiple problems, you will find out who here has the same things as you. You found the best place for info and support.
Now for a different subject that has been brought up before on here: Pain in the calves of your legs. I have had lower back problems for a long time but never pain in the calves of my legs. It's especially bad if I walk for a long period of time. It's more like an ache and it actually gets sore. I know some of you all have mentioned it. Is that what yours is like? I brought it up to my ortho doc so he is going to do a new MRI on my lower back. The last one was 3 years ago but I have a feeling from his expression that he doesn't expect to find it back-related. My last question is, does anyone know anything about pain centers and what they do? Hugs, Ginger. email@example.com
Jon's April 29 reply to Ginger's April 29, 2000 - Hi Ginger, Be sure to be checked for Peripheral Vascular Disease or PVD. It can be tested for in your doctor's office very easily if he has the right equipment. The test is called ABI and is just a fancy way of taking the blood pressure in your legs as opposed to the rest of your body. The blood pressure in your arms and ankles is checked using a regular blood pressure cuff and a special ultrasound stethoscope called a Doppler. The pressure in your ankle is compared to the pressure in your arm to determine how well your blood is flowing and whether further tests are needed.
I went to a pain management clinic regularly for migraines (for a year) and also for a couple of months for a severe injury to the cartilage in my ribs. The plus to such places is that they usually have an anesthesiologist available. One down side is that many of them - not all, but many - do not use narcotics regardless of circumstances. Jon.
Carol W, April 29, 2000 - Hi, This post is primarily for those of us who are diabetic, have CHF and neuropathy. Have any of you actually tried Alpha-lipoic acid to relieve the pain from neuropathy? After my doctor giving me an Rx for neurontin - which had me walking into doors and seeing double - I am ready to try anything else except the drug before that, which was an antidepressant that made me so thirsty I got fluid in my lungs. Anyway, can anyone give me a testamonial about whether it worked and how much you used? As always, thanks for all your support. If you like, please write to me at firstname.lastname@example.org
Kathy, April 29, 2000 - Hi, Utz are a brand of potato chips in the Piedmont area of North Carolina that are low in sodium. They have 95mg of sodium per 20 chips. That's the lowest I have found around here. email@example.com
Janet, April 29, 2000 - Hi All, You haven't heard from me for awhile but I'm still around. I had to "take a leave" from research about my cardiomyopathy and find myself again. I think for a while the anger and fear were consuming me and muddling my thoughts. I guess it's part of the denial that I love so much. I have a rediscovered interest now in finding others whose heart disease was caused by chemo drugs, a major double whammy. Is anyone else out there? firstname.lastname@example.org
Donna Z's April 29 reply to Ray's April 26, 2000 - Hi Ray, I started out with a persistant cough and I could not lay down to sleep; I would cough until I vomited. When I went to the doctor, at first they thought it was allergies or a virus I picked up. It wasn't until I began to swell with fluid and had no appetite (looking at food made me sick) that they realized something else was going on. By then my heart was beating 120 beats a minute. Go to your doctor and ask for at least an echocardiogram to rule out heart failure. Better safe than sorry. I hope you don't have this. It's no fun. Your life is changed forever. Donna. email@example.com
Gatha E, April 30, 2000 - Hi Everyone at Jon's Place, I love the discussion going on now about bronchitis and asthma, and also the swelling. I have had this problem for the last couple of months, even to being admitted to the hospital for 3 days for IV treatments and breathing treatments to kick this. I cough constantly and it is very productive. Does anyone have a good cough stopper? I have gotten off my monopril, take breathing treatments at home with Albuterol Solution and increased my Lasix to 160mg from 40mg. Sometimes I wheeze but not that often. Inhalers do not work on the cough. Does anyone have any suggestions? I have had chest x-rays every week and the fluid is better on my lungs but the cough is still there. Help! I had an echo in December and I do have 3 moderate leaking valves. Is this associated with coughing? Thanks, Gatha E. Jell855859@aol.com
Jon's April 30 reply to Gatha E's April 30, 2000 - Hi, I don't have anything specific to add but wanted to let everyone know that asthma inhalers may worsen heart failure symptoms. If you aren't completely sure that you actually have real, clinically diagnosed asthma, be very cautious about using these inhalers. Severe wheezing can be caused by CHF itself; it was one of my major symptoms for many months until meds finally got me properly compensated. Lots of doctors don't research this before prescribing them to CHFers so make your doc do his homework before he gives you an inhaler. Jon.
Gloria, April 30, 2000 - Hi, I have some questions about my dizziness and nausea. I have been on meds for 2 months since I was diagnosed with CHF. I am wondering if any others are on the same combination of medications that I am on:
I get very dizzy in the morning about 15 minutes after taking the drugs. Does anyone have any suggestions on how to stagger them, and what works? My cardiologist wants to increase the prinivil to 20-30mg a day slowly over the next couple of months and I am worried that I am going to get even more dizzy. Jon, thanks for maintaining this site. It's a life saver in more than one sense of the word! Do any of these drugs contribute to a sense of depression? Gloria. firstname.lastname@example.org
Gaile C, April 30, 2000 - Hi, My EF in 1998 was 22%. According to a recent MUGA, my EF is now 50%. Both my cardiologist and I were thrilled with this result when I received it in January. However, I'm still tired, my ankles are still swollenm activity still makes me short of breath. My cardiologist did not reduce any of my meds, yet he told me my heart function had returned to normal. I have read info here at Jon's Place that how you feel is much more important than your numbers but I am confused.
If my heart function has returned to normal, why do I still suffer with the same problems? Why did my doctor not reduce my meds? When I questioned him about it, he explained that he believes that my "life span" has been lengthened but that the "quality" of my life may not have improved. I have continued working full-time as a teacher since I was diagnosed with CHF, CM, and tachycardia in 1998. I have reached the point where the fatigue is getting the best of me and I am considering applying for Disability. According to info here on SSD, I no longer qualify with an EF of 50%. I am considering applying for Teacher Retirement Disability. My cardiologist thinks I will qualify if I score less than 20 on my metabolic stress test, or Vo2. In 1998, I scored a 14% on the Vo2 max. He thinks that EF is not the benchmark criteria for qualification. Can anyone help me understand these "mixed" results? I'm in a real dilemma about what to do. Thanks! email@example.com
Jon's April 30 reply to Gaile C's April 30, 2000 - Hi Gail, You probably read that EF qualifies you or disqualifies you for SSD in a post here. It's not on my SSD page. You simply have to talk to an SSD attorney to discover what the qualifications are in your state. Really. Also please note that you should not believe your doctor about Disability requirements! He is not an attorney and he does not work for SSA and he does not know for sure about the state to state requirements! There usually is not a magic number regardless of what test you use. The letter I describe on my SSD page is more important than test results!
About the numbers versus how you feel, welcome to the club. I'm another member. <g> Just a few days ago, my CHF doctor tried to explain it to me and promptly gave up (and he's good at explanations!). My EF is now 45% and I feel worse than ever. The past few days I have only been able to type for a few minutes and then my arms give out and I have to rest. I did better soon after diagnosis with an EF of 13%!
The plain truth is that doctors do not understand CHF, its control, or mechanisms of action and progression. By trial and error they have discovered that toying with our hormonal systems through ACE inhibitors and beta-blockers makes our hearts function better and keeps us alive longer; but this tinkering also affects our entire bodies in unknown ways. It is becoming plain to CHF specialists lately that beta-blockers are pulling our heart "numbers" up but for a large subgroup of us, it isn't doing a thing for our quality of life - nothing, no way, no how. They don't know why. I could go on and on with their theories but frankly, they just don't know. My own CHF specialist is pretty frustrated by it but he's good enough to admit that he just doesn't know what to do to improve how I feel. So it goes. Jon.
Rieale's April 30 reply to Kathy's April 29, 2000 - Hi, I don't know if you are familiar with Healthy Heart Market, but they carry a wide variety of low and no sodium items that can't be found in many areas. And yes, they do carry low sodium dill pickles. I'll be honest, they aren't as good as Vlassic, but it'll help curb the craving. The web address is www.healthyheartmarket.com/Merchant/home.htm. The pickles are:
ITEM: Cascadian Farms Low Sodium Dills. This great tasting dill has far less sodium than the national brands you find on the supermarket shelf. One of my best sellers. Serving size 1 ounce, servings per container 14, calories 5, total fat 0, cholesterol 0, sodium 135mg, total carbohydrate 1g. Twenty-two ounce jar. Item #11321 Price $4.95 firstname.lastname@example.org
Kathy S, April 30, 2000 - Hi, Thanks to you Jon, I now know that I'm only supposed to drink 2 liters of fluid a day. I have no idea how much I was drinking before. Does anyone have any hints of other things I can do to relieve thirst besides candy? Thanks, Kathy S. KCTripper@aol.com
Joe S, April 30, 2000 - Hi to Kim, Ray, Donna and Frank, Hey, we've all been there and done that. How about that? The thing that gets me the maddest is that a year before my CHF diagnosis I went to a doctor thinking I had diabetes. He didn't even examine me but sent me to a cardiologist. According to his records, which I received when I moved, he diagnosed me with CHF a year before anyone told me. The regular doctors kept treating me for bronchitis and asthma, making my condition a lot worse. All it took was a simple test to find out my lungs were full of fluid. Why didn't they do this before? I was going to doctors every month or so and they kept doing the same old tests. Oh well, all is going fairly well now. I'll find out tons more on May 10, when I go in for my first set of tests in almost 2 years. Joe S. email@example.com
Janet, April 30, 2000 - Hello again, I saw someone mentioning about pain in the calves of legs and had to comment. I have been discussing this with my doc for 3 years now and always get the same answer, "It's neuropathy caused from your chemo and there is nothing we can do about it." It seems funny to me that so many CHF people seem to have this malady and so many docs keep sluffing it off as an insignificant nothing, mine included. I'm talking to my doc again this week (getting results on my latest CT for recurrence of my cancer) and am going to really press him this time to at least look for a solution. I have gone through every perscription drug to help this too and they have done nothing. This has been a topic since I found this board almost 3 years ago now. It can't be just coincidence that it happens to so many CHFers! Janet. firstname.lastname@example.org
Jon's April 30 reply to Janet's April 30, 2000 - Hi Janet, You're right. My CHF doc's number one nurse admits that she hears this from too many CHFers for it not to be CHF-related. My CHF doc however, blows it off. Most CHF docs blow this one off for a couple of reasons: First, they don't know what causes it or what to do about it. Second, they want all non-directly-heart-related problems addressed by your primary care doctor, who unfortunately is not going to realize that your foot and leg pain is heart related. It's another no-win situation for patients. I've even quit asking for pain killers for mine just because I'm tired of the unspoken attitude: "If you don't have cancer, you don't have serious chronic pain." This is one of the few areas in which I am very unsatisfied with all my doctors! Jon.
Jeanette's April 30 reply to Kathy's April 29, 2000 - Hi Kathy, In simple terms a diuretic is like Lasix or demadex. It helps cause the fluid built-up in your system to leave, not causing CHF symptoms to return. I take 40mg of Lasix in the morning (best time) and throughout the day I pee like a race horse to get rid of the fluid that built-up in my body overnight. If you are careful of how much sodium you take in during the day, it makes the medicine easier to work. Some of us have fluid restrictions, meaning how much we can have of liquids each day. Those who do usually take a 2 liter bottle and when they have liquids of any kind, they measure the same amount in water and pour it into the bottle. This gives them an accurate record of how much they took in, and when the bottle is full that's it, no more liquid for the day and they start over the next day. Some don't even fill the bottle. Others may be able to take more. It depends on what your CHF specialist recommends or cardiologist in my case.
For potassium, diuretics like Lasix deplete your body of the potassium you store in your body. Sometimes docs put you on vitamin K to help keep the level normal. I don't have to take it because I have been eating a lot of potassium-rich foods like bananas. Check with your doc for your potassium levels if you are in doubt of them. He should be checking your levels at least every 3 months. I hope I have answered your questions. Check out the standard CHF Meds page for more info. Good luck and I am praying for ya. Jeanette. email@example.com
Brian, April 30, 2000 - Hi, Is there any relationship to the CHF or meds that would make my vein protude, or is it just old age? Forty-nine doesn't seemed that old anymore. Just a thought while I'm sitting here petting my cat and reading the posts. Thanks! BPGruber@yahoo.com
Jon's April 30 reply to Brian's April 30, 2000 - Hi Brian, Actually, if you're retaining too much fluid, your neck veins may protrude. It's something your CHF doc should be checking with his hands every time you see him. Or, is it other veins? Jon.
Bill C's April 30 reply to Gaile C's April 30, 2000 - Hi Jon and Gaile, I will have to join the club on numbers improving but quality of life on the bottom. My EF has ranged from 10 to 50%. The last 2 years it has been 45% but my quality of life has been slowly sliding downhill. My doc told me some cardiomyopathy patients do this for some unknown reason. It would be interesting to see how many of us here fall into this category? Compared to how many have an improvement in their quality of life, say over a 5-year period? Jon hit the nail directly on the head about doctors not knowing. I feel so much better after reading his post. At least I'm not alone or crazy. <g> Thanks for this site, Bill C. firstname.lastname@example.org
Henry T, April 30, 2000 - Hi, May 1 marks the second aniversary of my diagnosis with dilated cardiomyopathy and CHF. In these 2 years I've improved from an EF of 15% up to 40% and my ICD hasn't fired once! I have continued to work 40-50 hours a week as a principal and most recently as a disciplinary hearing officer for the district. I have continued to pursue a graduate degree unrelated to education and to make plans for a second career in ministry when I can retire in just 17 short months, but mostly I enjoy keeping up with my teenage daughters' crazy schedules and listening to my wife sing in the choir. I say all of this not to brag but to hopefully encourage everyone to take their meds, keep up with the research, find quality health care, read Jon's Place, and maintain both your faith and a positive attitude. Some days I feel awful and then there are days like today when my family, my friends, and the world around me fill me with love and hope for a productive future. It's so very easy to let this disease affect our hearts and our minds. If the meds can help our hearts, then we have the job of keeping our heads above water. I read this site every day and credit Jon and everyone who posts with helping me to keep on keepin' on. With heartfelt thanks to one and all, Henry. HRTick@aol.com
Kim S' April 30 reply to Kathy's April 29, 2000 - Hi Kathy, I couldn't help but chuckle when I read your post regarding dill pickles! A fellow CHFer and I were just talking about our cravings for dill pickles the other day and wondering why it is that a person craves that which we know we shouldn't have! One of the many things that I love about this site is the camaraderie that there is; all of us have so much in common! The wealth of information that is here at this site is wonderful. Yes, CHF certainly changes our lives but never have I been more appreciative of life, never have I been more grateful for so many things I used to take for granted. 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.