Jon 4-1 moving slowly today
Claudia S 4-1 seek Avapro experiences
Joe S 4-1 finally getting better & more
Joyce 4-1 sure am tired a lot
Herb 4-1 quick rising EF but can't sleep - anyone else?
Ruthie A's 4-1 reply to Rob C's 3-30 ARB versus ACE inhibitor experience
Joe S 4-1 I'm quite frustrated
Jon's 4- 1reply to Joe S' 4-1 surgery & doctors
Shelby H's 4-1 reply to Herb's 4-1 sleep apnea a possibility
Derald 4-1 a bit disappointed at echo results
Jon's 4-1 reply to Derald's 4-1 reminder of how well you have done
Derald's 4-1 reply to Craig's 3-25 coping
Joe R 4-1 confused about what choices to make
Jon's 4-1 reply to Joe R's 4-1 I hope others also reply
Julie 4-2 have HCM, very frustrated
Christine 4-2 do I need to change my attitude about work?
Ann R 4-2 arterio-venous malformation in coronary circulation - anyone?
Ginger 4-2 FDA warning about kava supplement use
Derald 's 4-2 reply to Joe R's 4-1 stopping smoking
Vickie's 4-2 reply to Julie's 4-2 hypertrophic cardiomyopathy experience
Derald's 4-2 reply to Julie's 4-2 second opinions and finding info
Don's 4-2 reply to Christine's 4-2 you sound just like me!
Darlene 4-2 have some questions
Brian M 4-2 should these pains worry me?
Joe S 4-3 it was a meds mistake
Donald Hudson 4-3 lymph nodes in chest - any ideas?
Nadine 4-3 intro
Barbara P J 4-3 SSD hearing a mess
Scott Brown's 4-3 reply to Christine's 4-2 to work or not to work
Patty R 4-3 there's always room for hope
Tina 4-3 seek peripartum experiences
Barbara 4-3 seeking some way to be useful
Sharon Wilson 4-5 heart leaping into throat & more?
Tom S' 4-5 reply to Barbara P J's 4-3 SSD - who knows?!
Christine 4-5 EPS, SCD, ICD questions
Janet 4-5 reply to Tina's 4-3 peri-partum cardiomyopathy support
Davida S' 4-5 reply to Donald Hudson's 4-3 similar experience
Sherrie 4-5 heart rhythm disturbance - anyone else?
Cathleen 4-5 url related to Disability
Jon's 4-5 repy to Sharon W's 4-5 heart arrhythmia
Ben B's 4-5 reply to Tom S' 4-3 doctors and diagnoses
Derald G 4-5 fast heart rate & Coreg questions
Scott Brown's 4-5 reply to Christine's 4-5 driving with arrhythmia or ICD
Jon's 4-5 reply to Scott Brown's 4-5 driving with arrhythmia or ICD
Jeffrey W 4-5 has anyone used the VA?
Keith 4-5 adjusting to life anew & more
Joe S' 4-6 reply to Sharon's 4-5 adjusting to meds
Tom S' 4-6 reply to Jeffrey W's 4-5 VA info
Nancy S' 4-6 reply to Derald G's 4-5 Coreg and LBBB
Tina M's 4-6 reply to Christine's 4-5 EPS experience & more
Betty 4-6 thyroid & body temperature questions
Rick M's 4-6 reply to Tom S' 4-6 veterans' information
Phil S' 4-6 reply to Jeffrey W's 4-5 VA experience
Jon 4-9 may be a bit slow with posts
John Len's 4-9 reply to Jeffrey W's 4-5 VA medical care experience
Derald G 4-9 pneumonia shot like a flu shot
Tom S' 4-9 reply to Phil S' 4-6 VA medical care experience
Joseph P's 4-9 reply to Nancy S' 4-6 ICD experience
Cindy 4-9 has anyone had an EKG through clothing?
Jon's 4-9 reply to Cindy's 4-9 EKG through clothing
Joe S' 4-9 reply to Jon's 4-1 feeling bad, prayer request
Jon's 4-9 reply to Joe S' 4-9 hang in there
Lisa 4-9 seek tachycardia-related cardiomyopathy experiences
Joe S 4-9 good news from doc appointment
Lou J 4-10 intro, diuretic questions & more
Jon's 4-10 reply to Lou J's 4-10 inpatient diuretics
Tracey C 4-10 low sodium cheese question
Craig A 4-10 a thank you and a CHF question
Phil S 4-10 going off all meds, BP questions
Jon's 4-10 reply to Phil S' 4-10 going off all meds, BP
John 4-10 chronic high BP but all better now, questions
Diane P 4-10 seeking diabetic recipe site
Derald G's 4-11 reply toTracey C's 4-10 low sodium cheese sources
Tina Mount 4-11 how to distinguish menstrual fluid retention vs edema?
Bernard Z 4-11 a good CHF doc makes the difference & more
Jon 4-11 things to do, yadda, yadda
Ruthie A's 4-11 reply to Diane P's 4-10 diabetic plus CHF diet very tough
John Hunter 4-11 is this my CHF coming back?
Noelle's 4-11 reply to Tina Mount's 4-11 weight gain during menstrual period
Pat H 4-11 slipping, seek advice & experiences
Karen F's 4-11 reply to Tina Mount's 4-11 figuring out menstrual period effects
Brandy 4-12 what is stage 3 diastolic dysfunction?
Mike W's 4-12 reply to John Hunter's 4-11 was in a similar situation & more
Jacky 4-12 update after trip abroad & more
Jon's 4-12 reply to Jacky's 4-12 went like this
Jon's 4-12 reply to Brandy's 4-12 stage 3 diastolic dysfunction
Scott Brown's 4-12 reply to John Hunter's 4-11 you should see a doctor
Scott Brown's 4-12 reply to John's 4-10 EF, recovery & more
Jon's 4-12 reply to Scott Brown's 4-12 EF, recovery & more
Dave K 4-13 the good spit diet plan
Lori K 4-13 side effect, chest pain questions & more
Ruthie A's 4-13 reply to Brandy's 4-12 stages of diastolic dysfunction
Maggie S 4-13 prayer request before surgery
Joe S 4-13 seek post-surgery experiences & more
Jon's 4-13 reply to Joe S' 4-13 possibilities
Tina Mount 4-13 hole in heart & Coreg questions
Jon's 4-13 reply to Tina Mount's 4-13 hole in heart & Coreg info
Tina Mount 4-13 are tanning beds safe with CHF?
Lori 4-13 seek anyone with asthma taking Coreg & more
Lisa 4-13 seek experiences with colds, flu and CHF
Joseph P's 4-13 reply to Tina Mount's 4-13 tanning with CHF - meds
Amelia 4-13 EF versus how we feel, questions
Joe W 4-13 the SSD saga - have a specific question
Cate Moore 4-13 URI
Jeremy 4-15 seek Atkins' Diet experiences
Jon's 4-15 reply to Lori's 4-13 beta-blockers & asthma and bundle branch block
Tom S' 4-15 reply to Cate Moore's 4-13 speak freely here & more
Jon 4-15 site search engine
Joseph P 4-15 seek constipation remedies
Lori K's 4-15 reply to Amelia's 4-13 blood cell counts & more
Craig 4-15 what does this mean?
Jon's 4-15 reply to Craig's 4-15 emoticons
Derald G's 4-15 reply to Lori K's 4-13 LBBB, chest pain & more
Tammy B 4-15 I could sure use some of your experience
Jon, April 1, 2002 - Hi everyone, I feel like a bowl of watery jello in a high wind today so everything will be sloooow. I ain't dead yet, though. ;-) Jon.
Claudia S, April 1, 2002 - Hi, I have recently had my Cozaar medicine changed to 150mg Avapro. This was because of insurance. I am wondering where you do a search now on this newer web site, or if anyone has used Avapro? The doctor says it is the same, but I no longer trust doctors. Thanks. I hope everyone is having a good day. CMSchm@aol.com
Jon's note: I hope others reply because the site search engine is not yet up and running
Joe S, April 1, 2002 - Hi, Well, it's now been 3 weeks and 4 days since my surgery and I finally can carry on an intelligent conversation, I think. I put myself on oxygen all day yesterday and it seemed to help. It sure would have been nice if someone from one of the doctors' offices had bothered to tell me what I was to do with 15 containers of oxygen. I have made 6 calls to no avail. I finally remember some of what the surgeon said. The surgery was far more critical then I thought and it's going to take a lot longer to heal than I thought. God give me patience and I want it right now! <g> Thank you everyone, for your imput and help through this horrible period. As of yesterday afternoon, I can finally see a light at the end of the tunnel. I sure wish I knew why, Joe S. email@example.com
Joyce, April 1, 2002 - Hi, It seems to me that every time I post here I'm whining about feeling tired all the time. It's two in the morning and I am feeling sorry for myself. I do not feel this way often, but when it comes it comes big. Sometimes I am so tired, but I feel like maybe I'm just being lazy. My doctor says I'm lucky in that I don't have any other problems like some of you do. Talk like that only makes me feel worse. Well, I guess that the pity party is over for now. I'll put on the happy face for my family. I just had to tell someone who understands how I feel. Thanks for your patience and understanding. firstname.lastname@example.org
Herb, April 1, 2002 - Hi, I am 56 now and this last October (2001) I spent six days in Club Med. They did all the normal tests to include stress, echo and a heart cath. i was told there was no blockage or other problems except an enlarged heart and was told I have CHF with an EF of 20 to 25%.
I was placed on Aldactone, digoxin, Lasix, Coreg, and Lisinopril. When I was first released from the hospital I felt much better, but as time went on I was feeling tired and really short of breath, and just overall bad. I went to see the cardiologist in mid-January. He scheduled a MUGA test ASAP. My EF came out to 71%. The doctor now suspects the weakened heart muscle may have been related to a possible viral cardiomyopathy. I guess one question is, "Has anyone else had an EF change that much in that short a time?"
On the doctor's advice I am now only taking Lisinopril and 12.5mg of Coreg a day. I feel much better not taking the other meds, however I am still short of breath at times and wake up many times at night if I lay flat for any length of time. I do not have any edema that I know of. Has anyone else had such a change in EF and still has sleeping problems? Take care, Herb. email@example.com
Ruthie A's April 1 reply to Rob C's March 30, 2002 - Hi Rob, I cannot take ACE inhibitors (the famous cough problem) and now take an ARB. I had an angioedema experience with Cozaar and thought I would not be able to take ARBs either; but my doc wanted me to try a different ARB while under very close supervision. I took Atacand without any trouble and changed to Diovan when my insurance changed, also without any problems.
Check with your doctor about ARBs. My doc says that although their effectiveness is not as well known as the ACE inhibitors, for those of us who need them, ARBs are a very good substitute. So there is hope, Ruthie A. firstname.lastname@example.org
Joe S, April 1, 2002 - Hi, I finally got a report from my surgeon faxed to me by a nurse I have never known, in words I haver never heard. First he says I have left ventricular failure, second post aortic valve hetrograft prosthetic replacement. This is nice, but what in the world is it? I had my aortic valve and an artery replaced. Are these things that will heal naturally? Do I have to have another surgery?
When I was there I was so spacy I almost didn't know who I was. I did complain that my left arm and leg were going numb and he said, "That's natural when you have arteries removed from them." That was sure nice to know. What else did they do that I don't know about? Then after the surgeon took me down to see a cardiologist, I was finally told it might take me 6 months to heal. Why didn't they tell me that before? When I asked him about my staples, he looked at me and told me I don't have any. Then why did his office call me to have them removed? I'm sorry I just have to vent my anger and questions at some one who cares, Joe S. email@example.com
Jon's April 1 reply to Joe S's April 1, 2002 - Hi Joe, I'm sorry you're having a rough time with recovery. Bummer. To repair a damaged or blocked artery is usually referred to as "bypass surgery." Another blood vessel must be harvested from somewhere else in your body to "bypass" the damaged or blocked one. That "harvested" blood vessel usually comes from your leg but can also come from your arm or chest. Surgeons are like a lot of doctors and just don't explain anything. When they do, it's usually in medspeak.
Anyway Joe, in plain English it sounds to me like they did what you needed done but they just haven't done the explaining very well. The drugs don't help, but hopefully you'll heal up slowly but surely and see some real improvement after that. :-) Jon.
Shelby H's April 1 reply to Herb's April 1, 2002 - Hi Herb, Your symptoms sound a lot like Obstructive Sleep Apnea. OSA causes you to wake up several times in the night, more often than you know, usually. A common symptom is waking up gasping for air. The apneas (a period where you stop breathing) are really hard on your heart. If you snore or are overweight, those are big signs too. You might want to look into having a sleep study done and being evaluated for sleep apnea. Good luck, Shelby. firstname.lastname@example.org
Derald, April 1, 2002 - Hi, Today was an ambivalent day for me. I've had my first echocardiogram since I was first diagnosed with LBBB and cardiomyopathy in December of 2001. I was at 30 to 35% then but was only on 5mg of enalapril for a week or so when tested. Now I'm at 40% EF on 20mg of enalapril after 3 months of serious diet changes and no smoking for 6 months.
I realize that 40% is better than 10, 20, or 30 and I'm grateful, but I feel the gain is only cosmetic from the enalapril and that my heart itself is not improving (but at least is not getting worse!). I guess I was just hoping I'd be one of the lucky ones that has a major recovery. email@example.com
Jon's April 1 reply to Derald's April 1, 2002 - Hiya Derald, While you haven't gotten "well," I'd just like to give you a very large congratulations for stopping smoking for 6 months! That ain't no small thing. If you apply yourself with that kind of will to all your life style and meds routines, you'll do well, I think. Jon.
Derald's April 1 reply to Craig's March 25, 2002 - Hi Craig, Sorry about the wife. Whatever happened to "for better or worse, sickness and in health?" Well you're young and you just found out about your health. You have a chance to get much better. I feel sorry for your wife who one day will have to try to explain to your son why she left his sick father. Pray for her.
I agree with Scott that counseling is a very good idea. If money's a problem there are organizations that have "sliding scale" fees. firstname.lastname@example.org
Joe R, April 1, 2002 - Hi, I am 40 year old who wound up in Club Med February 8 with chest pains. I was told after a cardiac cath that I have DCM with an EF of 35%, class 3 CHF, angina, high blood pressure, and high cholesterol. I was put on these meds: 40mg Isosorbid TID, 10mg Accupril daily, 0.25mg digoxin, 12.5mg Coreg BID, 20mg Zocor, 40mg Protonix, one mg folic acid, and nitro tabs as needed for chest pain. It is a grueling task for me to take these meds because 20 years ago I was a drug user and I don't like to take pills now. This is the reason for the CHF/DCM. I have a 15 month old baby girl that I have custody of because my wife is a mental patient.
I ended up back in Club Med on Marhc 27th from going back to work and overdoing it. Will I ever get better? Will I ever be able to return to work? I have been trying to quit smoking and can't! I am always tired and depressed and everyone pities me. My family just tells me to go back to work but the doctor tells me no. I am confused about what to do. What to do? Joe. email@example.com
Jon's April 1 reply to Joe R's April 1, 2002 - Hi Joe, I'm too tired to say much right now, but when your family gets a medical degree, then they can tell you what's best for your health. ;-) Jon.
Julie, April 2, 2002 - Hi, I was diagnosed with HOCM (hypertrophic obstructive cardiomyopathy) in February of 2002. I take 100mg Lopresser twice a day. I was told not to do any physical exertion but a short brisk walk - nothing to raise my heart rate. I don't sleep well, am extremely fatigued, have fluctuating blood pressure from 150/100 to 105/65, and I cannot get a straight answer from the doctor. I am past the crying and shock but remain very frustrated. I don't drive (side effect of beta-blocker) and am working part-time. How and where do you find someone to listen and help? Juliannestory@aol.com
Christine, April 2, 2002 - Hi everyone, While I am not new to this site I have only posted a few times before. I am 34 and was diagnosed with idiopathic CM in August, 2001. My condition has shown no improvement with my meds, but there is no deterioration either; thank goodness!
Anyhow, the reason I write today is because I have had my first appointment with the transplant team at my hospital, and for the first time since I was diagnosed I truly am scared. Don't get me wrong, this entire journey has been frightening, but now I am experiencing this fright at a new level. I thought I was doing very well, for despite an EF of 20%, I have managed to lead a rather normal life. I am a mother of 3 young children and I still work full-time as an IT Manager, which I must admit is a rather stressful job.
I ended up in the hospital after my husband suffered a job loss, with chest pains that were probably related to stress. I am now considered pre-transplant - a so-called "grey-area" where they are pretty sure I will need a transplant but they just don't know when, no comfort there. What concerned me is that my doctor stated that of all the patients she has that she considers to be in this "grey area" (about 50), every one of them is on disability. I abruptly stated that now she has one that isn't. She took that comment as an aversion to disability, which is not the case. I am relieved it is there but I just feel like I shouldn't be on it until I really need it. Also, my work is a big part of my life, a part that I feel helps me to cope day to day and keeps me going. I love my job and I know my limitations.
However, I now find myself wondering if I have the right outlook; if I am holding onto my career for the right reasons. Would letting it go eventually help my health, and prevent a possible transplant? Has anyone else had to deal with these feelings? This confusion? My husband seems to think that I am in denial of my condition, an opinion with which I disagree. He thinks that if I left my job, I would have a better chance at getting healthy. Right now, given his unemployment, I don't even feel like leaving my job is an option.
Help! I would appreciate any comments or advice on this! I hope I didn't sound too whiny! Thanks, everyone! firstname.lastname@example.org
Ann R, April 2, 2002 - Hi, After 4 years of fighting DCM and CHF with an EF ranging from 14% to 45%, I was shown that I have an fairly big arterio-venous malformation in my coronary circulation. Just last week, I saw this ball of gummy worm looking things all tangled up somewhere between the left atrium and ventricle, during cath. A couple of arteries also appear to go nowhere. I read that this congenital condition can cause both the CHF. I realize that both have to be treated regardless of the cause but wonder if anyone out there has or knows about the condition. I'd love to talk.
My cardiologist says there are no consequences to this, but aren't both CHF and DCM icky consequences already?! <lol> There's not much info out there for coronary artery AVMs. Thanks, Ann. email@example.com
Ginger, April 2, 2002 - Hiyas, It's been awhile. I've been laid up with a fractured upper back. Anyhow, I want to post this just in case anyone here is using kava kava. The FDA has issued a second notice about the serious risk of severe liver injury associated with the use of kava-containing dietary supplements. Supplements containing the herbal ingredient kava are promoted for relaxation (to relieve stress, anxiety, and tension), sleeplessness, menopausal symptoms, and for other uses. Stay well, y'all. Hugs and prayers, Ginger. firstname.lastname@example.org
Derald's April 2 reply to Joe R's April 1, 2002 - Hi Joe, I know smoking is hard to quit. I used Nicorettes (the gum) to quit a 2-pack a day habit. It still wasn't fun but the gum at least made it tolerable. I used the gum for 3 months, then went cold turkey on the gum. I joke with my wife that when some day they finally give me 6 months to live I'm "lighting up" cause they can't hurt me then. <g> email@example.com
Vickie's April 2 reply to Julie's April 2, 2002 - Hi Julie, I was diagnosed with HCM in September of 2000 and am currently on 100mg atenolol and 600mg Norpace per day. I am 46 years old and have children ages 8, 10, and 13. My symptoms are better on meds but I understand your frustration. I deal daily with the limitations and restrictions this disease puts on your life too.
There is no history of sudden death in my family and for that I am grateful, but the risk is always in the back of my mind and especially for my children. They have all been tested and so far none have tested positive but one had a borderline echo and two had abnormal EKGs. They will be re-evaluated in September. Do you have children and if so, have they been screened?
I am very tired and short of breath, and it is hard to determine if these are side effects of the beta-blocker or part of the cardiomyopathy itself. The chest pain that I had so much of before diagnosis is greatly reduced since going on meds and I am happy for that. I am sure you have heard of other treatment options for HCM. They include alcohol ablation and surgical dissection of the muscle (myectomy) for cases not helped by meds.
Do you know what your gradient or septal wall measurements are? The best information I have found is at www.hcma-heart.com. There is a lot of information there and also a message board. You can find out about becoming a member of the HCMA if you are interested. Good luck to you. Feel free to e-mail me anytime. I have had a little more time to get used to this diagnosis than you have had, Vickie. firstname.lastname@example.org
Derald's April 2 reply to Julie's April 2, 2002 - Hi Julie, You are a newbie CHFer like me but you're on the right track looking for answers on your own. The evidence is that you've found this site. My cardiologist put me on enalapril and told me I had cardiomyopathy and to take it easy. He didn't discuss exercise, sodium, or anything really. I had to bring up each subject. I only knew to bring them up because I had read through The Manual.
I searched the Internet and have a meeting with a cardiologist in Portland that specializes in cardiomyopathy. I hope to get a lot of questions answered. I've been waiting 3 months to get in and see her. She only has open practice oje half day a month. If she can balance me in, great, if not at least she can refer me to someone in Portland or Seattle. I'll drive that far to get expert help. There are no cardiologists I know of in Eugene where I live that specialize in cardiomyopathy.
Get a second opinion from someone that will talk to you. Write down questions before you go in so you don't forget them. email@example.com
Don's April 2 reply to Christine's April 2, 2002 - Hi Christine, I thought I was reading my own bio as I was reading your post. I was diagnosed with CHF in August of 1998. Last April I was sent to meet with the heart transplant coordinator at my local hospital. At that time they ran some tests, the results of which placed me in that gray area you spoke about. In August of 2001 I started not feeling so well. These tests were redone and more tests were done, and I am now on the transplant list awaiting a heart.
I also work in IT and am working pretty much full-time. I have begun working from home on Fridays because I get really tired by the end of the week. My transplant doctor won't come out and tell me to go out on disability but he says he will "strongly support any decision I make to reduce or eliminate my hours." I really like my job and will continue to keep doing it until I just can't do it any more. The doctor is very concerned about my mental health and keeping me out of the hospital during my wait. I am sure at some point I will have to go out on disability, but I'm not quite ready yet.
I don't know if you have the wrong outlook or not, only that you seem to have the same outlook I have. If you find the answer, please share it with me. firstname.lastname@example.org
Darlene, April 2, 2002 - Hi, I would just like to comment that I am pre-transplant and when people ask me if I am on the list, for some reason I go into this big explanation to the point of no one probably understanding what I am saying. I am not sure if I know what I am saying. So when I was reading Christine's April 2nd post today, I just want to say thanks for a way easier explantion of "I need a transplant, they just don't know when." How could this have been so hard to explain?
Also,does anyone experience bad pain across their back with a nauseated feeling? Is this to do with CHF? It comes on at no particular time or reason. I have mentioned this to my doctors but there seems to be no concern. I think they believe it is a muscle pain, which I know how aching muscles feel and this is not the same at all. This is pain, not ache.
Also, just to ask, I snore terribly, am slightly overweight, have definitely awakened at times gasping for air, and always wake up many times during the night even on sedatives. I also sleep with about 6 pillows and am always short of breath. Is there a reason they would say I do not have sleep apnea? email@example.com
Brian M, April 2, 2002 - Hi everyone, Yesterday morning I woke up with a sharp pain in center of my chest that lasted for about 3 or 4 minutes, then went away. I have had sharp pain in the left side of my chest before and told the docter about them, but he did not seem too concerned. I was wondering if anyone else has had this problem before and if I should worry about it. I also get pains in my legs and arms. I'm now taking Coreg, digoxin, enalapril and aspirin. Thanks and God bless everyone. BrnFshng@aol.com
Joe S, April 3, 2002 - Hi everyone, Well, guess what? After being nearly out of my head for over a week I found out that the problem was all me. I had misread the prescriptions and was doubling up on Lasix, digoxin, Prinivil and Aldactone. I was getting spacier and spacier. I couldn't even keep my eyes open. I don't know how I even discovered my own mistake. Praise God, Joe S. firstname.lastname@example.org
Donald Hudson, April 3, 2002 - Hi, I am a long-time reader you have helped daily, and I have a new need. I had a CAT scan for enlarged lymph nodes in the center of my chest. Is this coronary insufficiency problem or something else? I have COPD and CHF. Has anyone else any knowledge of cause? email@example.com
Nadine, April 3, 2002 - Hello everyone, I am new and I've enjoyed your many comments, experiences, and upbuilding words. For a long time now I've been looking to correspond with people who have experienced what I'm going through. At the age of 41 I was diagnosed with cardiomyopathy. I cried for several minutes when the doctor told me. I thought it was asthma because I was being treated for that. I was pretty healthy, a non-smoker, and I did not drink. Wham! Now my life would be changed forever.
I asked the doctor at the heart failure clinic, "Is this it? Should I take a trip around the world and just wait for the end?" He told me No, and to go back to work and live my my life. He said to listen to my body, take my meds, reduce my salt intake and they would monitor me. They said I wasn't sick enough for a transplant. Imagine being given this information. I wanted to stay in touch with those who know what I'm going through. Thank you Jon for your site! A positive attitude is very helpful.
Recently I lost my work place at the World Trade Center. I have been feeling sick since September 11, 2001. I work in medical. There has been a lot of stress. We comfort people and at the same time have been affected by the pain and suffering. We lost coworkers and friends. I'm fully convinced now that our emotions play a significant role on our heart problems. I have a very good doctor that is a cardiologist, but he's also into clinical nutrition. He helps me to keep a positive attitude. There are supplements we can use to strenthen us.
Again, thank you all for your kindness, support, and concern. I've had this condition since 1994. I didn't think that I would be alive 8 years later. I'm interested in talking to anyone who would like to talk. Peace and love, Nadine. firstname.lastname@example.org
Barbara P J, April 3, 2002 - Hi, Well, I was denied at the hearing level on my SSD claim. I cannot believe what I am reading. Although on Zoloft, I "never mentioned her mental illness." I guess trying to make lemonade out of lemons in life is not the thing to do. I "admitted to activities of daily living such as driving, grocery shopping, light cooking, washing dishes, and a little housework such as picking up around the bedroom." Let's see, I drive - but not more than 10 to 25 minutes at a time (and live in a very rural area), I grocery shop if someone else is there to push the cart while I ride the electric cart, I might load the dishwasher but can't remember the last time I did dishes. Then said I exercised by "dancing to tapes." I sure do but it's Dancing with Grannies, done completely sitting down and only what I can without chest pain. My "average day included taking grandson to school in the morning, talking on the phone, taking a nap sometimes, and helping grandson with his homework in the afternoon." I can leave at 7:45 and be home by 8:00 AM. I guess I should not talk on the phone, nap almost daily for 2 to 3 hours at a time, and I reckon the child doesn't get someone to go over their homework.
The real corker is that "claimant actually followed a written script when giving her testimony which only served to prove that she really can sit and perform clerical tasks." My attorney had written, "answer questions with a yes or no." That was my "written script." Now I am throughly upset with the whole claim bit. Having worked from age 15 till age 59 with only a few months off total, and now unable to function on a regular basis, someone who does not live with me has determined that I am able to work full-time! Since I will be 62 in August of this year, I can see someone hiring me who would allow me to either sleep or go home when tired, come in late if I'm having a bad day, go home early for the same reason, and be sure and keep medical insurance on me until age 65. Yeah, right. I'm sorry for venting, but I am really upset at this whole mess. email@example.com
Scott Brown's April 3 reply to Christine's April 2, 2002 - Hello Christine, I work in IT as well. I am the IT Crisis Coordinator for a medium-to-large size company. My LV EF is 25%. If you feel like working, I think you should continue to do so. This is why I think so:
You have less of a tendency to get deconditioned, less time to think about your condition, and it provides a better income while you can still work. Most importantly, when you are sick enough, you will just not feel the energy or care for going into work. It sounds like you still care. Stressful situations only affect us if we let them. I would think that not working can be very stressful as well. Maybe someone off work could comment on that. I hope you continue to have the energy to keep going! Scott B. firstname.lastname@example.org
Patty R, April 3, 2002 - Hi Jon, I haven't written to you in a long time so I thought I would bring you up to date. I live in South Jersey and and am 49 years old. In 1996 I was given the devastating news that I had cardiomyopathy. My heart was enlarged and I was suffering from a chronic cough. I could not walk stairs without stopping to catch my breath. I was being treated by a cardiologist at the University of Pennsylvania, and he was not optimistic.
Well, I have good news. I have been off my meds now for 2 years and remain very well. My heart is still a bit large, but there is no longer any LVSD. There is always room for hope. Thanks. email@example.com
Tina, April 3, 2002 - Hello Everyone, I am new to this site and recently diagnosed with CHF due to peripartum cardiomyopathy (October, 2001). I have been trying to find other women who have experienced this and find out how they are coping. Unlike many women who are diagnosed with this after they have delivered their babies, my "event" happened when I was 28 weeks pregnant with our daughter and an emergency C-section was performed. I had no idea that was what was going on. I thought I had preeclampsia (as did my obstetrician) and a bad cough.
I haven't had a lot of time to research since our daughter came home from a 10-week stay in the neonatal ICU back in January. My EF before delivery was 15%, then 25% after, and then 35% six weeks later. I just had another echo yesterday and it's still 35%. I also now have moderate mitral valve leakiness, which has improved from severe.
My doc says it's too soon tell if I need open heart surgery to repair my valve since it's only been 5 months since the event. I am just looking to see if there are any others out there who have experienced this and may have some info for me. Thanks. firstname.lastname@example.org
Barbara, April 3, 2002 - Hi everyone, I am so glad this is available. I have been recently diagnosed with idiopathic DCM and am 50 years old. This year hasn't been a great one medically because last summer I was also diagnosed with diabetes. I've been controlling my diabetes with diet and have been pretty successful at it, and then Wham! (as most of you have discribed it when you were told about your CM), I was also diagnosed with this.
My EF is 39%, which in reading the EFs of others, I feel pretty lucky. I have started Zestril, lipitor, atenolol, and hydrochlorothiazide. I have been dealing with the fatigue and wish I had a regular place to work so I could feel productive. I substitute teach and now am afraid of being with the kids because I seem prone to pneumonia. I just got over a really bad bout in December. I love the kids and miss them. I keep feeling like my life needs more of a purpose, I guess.
I've raised 3 fine children, and breed Giant Schnauzers but I don't want to die not having done something important, helping someone. Does anyone understand what I mean? Like I've been given this time by God to make a difference. My dad died at age 47 of a heart attack, very quickly. He never had an opportunity to enjoy his life but he was very loved by many people and being a New York City cop, he helped many people. I just feel like I've always coasted. Having this really makes you examine your life and soul, I guess. Sorry for my rambling, Barb. email@example.com
Jon's note: Ever thought of starting a web site? There are plenty of heart failure areas and angles I can't cover
Sharon Wilson, April 3, 2002 - Hi all, Last night I was just sitting at the computer and had been for awhile. Out of the blue, my heart leaped into my throat and somebody squeezed my throat fit to squish me. My heart was racing and I felt rather weak. This kept happening off and on for about 20 minutes, I suppose. I called my husband right away and he came home to watch the Tyrannosaurus Toddler and I went to bed. Nothing else happened, so I did not call the docs. I am tired today but then I also was awake till rather late last night. Has this happened to anyone else? Any clues? Thanks! firstname.lastname@example.org
Tom S' April 5 reply to Barbara P J's April 3, 2002 - Hi, It seems there is absolutely no rhyme, reason, or uniformity to how Social Security Disability claims are handled. There doesn't seem to be a single set of criteria for all the states, and from my experience it would almost pay to move to a part of the country where people seem to have an easier time getting approved.
Not knowing your full medical history it is hard to say why you were turned down. Perhaps you are not considered "terminal" which I have been told is key to qualifying for SSD. There are other criteria as well but that seems to be the lynchpin. email@example.com
Christine, April 5, 2002 - Hi everyone, I was wondering if anyone has had to have an electrical study done of their heart (EPS)? I have strong palpitations as well as irregular heartbeats, and have been told that I need to have this as part of my pre-transplant testing. I have not been able to find any info on this procedure. All I know is that the surgeons insert some wires into your heart and try to produce V-tach. Apparently the easier it is for them to do, the more likely the chances of sudden death. If this occurs, then a defibrillator needs to be installed to help prevent SCD. If anyone could provide further info on this, I would appreciate it. Particularily if anyone knows if you lose your license if you have a defibrillator installed in Canada. Thanks everyone! firstname.lastname@example.org
Janet's April 5 reply to Tina's April 4, 2002 - Hi Tina, I'm very sorry to hear about your PPCM experience. I've also had the condition since 1999, being diagnosed in June of 2000. There is a support web site at www.ppcmsupport.net that is run by another patient, that you may want to check out. I know this is a difficult diagnosis when you have a new baby, but keep in mind that the outlook for us is very positive long-term. Take care, Janet. email@example.com
Davida S' April 5 reply to Donald Hudson's April 3, 2002 - Hi Donald, I don't remember the details but my mom had the same problem. It was chalked up to her CHF and enlarged heart that was trying so hard. It's been years and I wish I could remember the details. Hopefully your doctor can elaborate more on the cause. firstname.lastname@example.org
Sherrie, April 5, 2002 - Hello, I have had congestive heart failure for 2 years and asthma for one year. I have been doing well on my meds. My last ejection fraction measure was 55% and I have felt well. However, twice now I have had episodes of extremely rapid heart rate with SOB and dizziness, chest pain, and nausea. My doc says he thinks my heart is throwing abnormal rhythms and I have to wear a 30 day event monitor. Has anyone else experienced this? I am kind of down about this latest development so any replies would be appreciated! Sherrie_Den@yahoo.com
Cathleen, April 5, 2002 - Hi, I found this excellent url for an advocacy group that will help you receive the benefits (SSD, etc) that you are entitled to: www.gentiva.com/access/. Cathleen. email@example.com
Jon's April 5 reply to Sharon W's April 3, 2002 - Hi Sharon, I had similar experiences a couple of years ago. I wore a 30-day event monitor but none of the bad episodes happend during that time - naturally. Then my doc caught part of one episode at an office visit and threw me in the hospital, and monitored me until he was sure it wasn't dangerous. My arrhythmia went away about 3 or 4 months and never came back. I attribute that partly to my taking magnesium daily since then but of course that could just be coincidence. While I was having it, I was lightheaded - even dizzy - and weak. Riding in a car or elevator took my breath away and I refused to drive.
People with heart failure are prone to arrhythmia because the enlarging of the heart stretches its electrical pathways, making them less stable. Changes in sodium, calcium and potassium levels - and their interaction - come from both CHF and meds. These changes can cause misfirings in our heart's electrical system. The heart actually beats because of interactions between these substances at the cell level. Our nervous sytem is overactive in heart failure as well. This is caused by the body's natural responses to a weakened heart and can trigger weird rhythms.
If anyone gets any such problems, please contact your doctor immediately - your CHF doctor, that is. It may be nothing but palpitations but because some arrhythmia can be very dangerous, it pays to check it out and be safe! Jon.
Ben B's April 5 reply to Tom S' April 3, 2002 - Hi, Aren't these doctors who labeled you terminal the same ones who predicted you would be long dead by now? <lol> I hope you stay "terminal" at least another 30 years and the same for all of us. firstname.lastname@example.org
Derald G, April 5, 2002 - Hi, I've been reading and sympathizing but I'm so ignorant about all this stuff I'm not much help. Last night, after feeding the horses, my chest felt tight like it did before I started meds. I checked my BP it was 160/92 and my pulse was 150. I started to go to the hospital but decided to rest some more and recheck in 5 minutes. Gradually over the next half hour it settled down to about 77 (my normal is around 60), my BP was lower too. Was I having ventricular tachycardia or an arrhythmia, do you think?
I called my cardiologist's office this morning but no one has called back. They never do. Also, I think I have figured out why I'm not on Coreg - it's because I have LBBB, right? Thanks, Derald. email@example.com
Scott Brown's April 5 reply to Christine's April 5, 2002 - Hi Christine, One comment about Canada: the doctor may tell you not to drive, but I have never seen a doctor actually enforce the recommendation - they do not phone the license place. I guess the question is, "How dangerous is it to drive with a defibrillator?" It sounds like other people on this board still drive, Scott. firstname.lastname@example.org
Jon's April 5 reply to Scott Brown's April 5, 2002 - Hi Scott, I have read two studies on this question lately. One says it is safe for many ICD wearers to drve. The other says it is not safe for many ICD wearers to drive. Faced with absence of proof, I would rephrase your question: "Am I willing to risk people's lives so I can drive my car?"
One fairly common safety precaution is to not drive for the first 6 months after ICD implant. Then, if you have not been shocked, start driving again and drive as long as you remain stable. With arrhythmia but no ICD, this becomes highly individual, depending on type of arrhythmia, how often it happens, and what occurs just before and during the arrhythmia epsiodes. If, after considering all these things and talking it over with your heart specialist, you seem to be at little extra risk for causing an accident, I say drive. If you do seem at higher than usual risk of causing an accident, obviously you should not drive.
I suggest that anyone with an arrhythmia that can cause lightheadedness, dizziness, fainting, or heart attack and cardiac arrest discuss at length with their heart specialist the risks involved in their own particular case; and the same for an ICD wearer. Like I stated in an earlier post, when I had such symptoms I quit driving. Obviously it's each person's choice but it is a choice that should not be made lightly. Jon.
Jeffrey W, April 5, 2002 - Hi, Has anyone had any dealing with the VA for medical services? email@example.com
Keith, April 5, 2002 - Hi, It's about 2 years now since I suffered a massive heart attack. I now endure class 4 heart failure. As soon as I could pass a stress test (about 9 months later), I was accepted into a monitored exercise program. My stamina has improved, even if my capacity hasn't, and may be at or near my limit. I worked with 1 to 2 pound weights, some flexibility work, and able to walk a level treadmill at 2.2 kph for 7.5 minutes. All of the other patients on continuous intake soon surpass me.
During the MI, my aorta ruptured and collapsed. The attempted angioplasty failed. I still cannot reach up or bend below my waist without dizziness and some nausea. I cannot lie on my left side more than 15 seconds or take a bath - my blood pressure drops and I pass out. Climbing one flight of stairs takes 10 to 15 minutes with considerable pain and exhaustion. I am still tied to a 3:30 hour cycle of sitting and rest.
Yet this active improvement, and the fact that I'm still around, has got me thinking in terms of "future" as well as "now." I'm also thinking about quality of life, where any life at all was thankful to be at first. As I understand it, I cannot receive a heart transplant because of the damage to my aorta. The CoRestore patch doesn't appeal to me. I mean, 65% of my heart is scar tissue and that won't leave much but the recent work with LVADs seems encouraging. Imagine!
However, I don't want to talk myself into something. I do know that the first implant of an artificial heart for a Canadian with CHF happened a couple of weeks ago in Montreal. I am fairly young, healthy, and have no congestion. Even if the device would need to be replaced every 2 to 5 year, I know that barring complications I could withstand it, at least to finish out my working years and see my family grown.
Funny, this, being a bystander in our own life or what it's become. There isn't but a day goes by (seems like a week) that there isn't something new to accept or adjust to in different light. firstname.lastname@example.org
Joe S' April 6 reply to Sharon's April 5, 2002 - Hi Sharon, I have had a bad heart for 58 years; supposedly up until one month ago when they replaced my aortic valve. I am going to call it the lost month. Two weeks ago I saw the surgeon, who said I had an arrhythmia and gave me 0.25mg digoxin. My life has not been the same since. I have been dizzy and lightheaded. If I was saner, I would have told the doc I have had this for as long as I can remember and all I ever did was lie down for awhile. I am taking about five drugs and digoxin is the only one that has given me a side effect like this. I have tried to call the docs for over a week with no luck. Even the nurses won't return calls. At least this morning I am feeling better. Hang in there, this too shall pass, Joe S. email@example.com
Tom S' April 6 reply to Jeffrey W's April 5, 2002 - Hi, First off I also hope the doctors are correct on their diagnosis of me. Thus far it has extended my life over 6 years. May they continue to be "correct." Now if the doctors haven't killed me yet I think the VA (Veterans Administration) gave it a good try. I have had extensive dealings with the VA hospital system and while I have been very impressed with the level of professionalism and caring, an apparently overworked pharmacist didn't follow the doctor's orders and if I hadn't thought to start counting the pills in the prescriptions I receive from them I may well have had an earlier than expected demise.
The VA provides medications for a small co-pay fee depending on your level (1to 7b), with the higher number being the lower priority. Purple Heart recipients fall in the 3s and Medal of Honor winners are 1s. Co-pay is about $7 per Rx for a 30-day supply and $21 for a 90-day supply. I have 9 prescriptions they fill for me, so you do the math. Office visits are $51.
The VA is an excellent adjunct to any other professional medical care you currently receive and it is worth applying for if you have a VA clinic or hospital near your home. I travel 60 miles to get to the nearest VA hospital even though there is a clinic less than 20 miles from my home. The clinics are generally overbooked and not nearly as complete a facility as the hospitals.
From what I understand, the VA works on a first come, first serve basis. They told me I would have to requalify every year because I am a lowly unwounded Vietnma vet. Usually a visit to the hospital starts with a trip through the lab and the blood letting seems to never end. They like bodily fluids for some reason and they take plenty of them. Be prepared to wait because there usually are a lot of people already waiting. I have found it is best to ignore the set appointment times they give out since they are only approximations of when you will actually be seen.
I get to the hospital when the doors open at 8:00 AM and usually I am through the lab by 9 or 9:30 AM, sometimes sooner if I am lucky. Then it is hurry up and wait for the doctor or screening visit with the nurse. Generally I have been lucky to be done by noon, but one day I actually didn't leave then hospital until well after 3:00 PM because they wanted to take another blood sample.
You need to be aware that you should apply as soon as possible. VA service is not income-dependent. You can check out the process online at the VA web site http://www.va.gov/. You will need a copy of your discharge form DD214. For information about obtaining your military record, go to the Military Personnel Records Center in St. Louis, which is part of the National Archives and Records Administration, at www.archives.gov/facilities/mo/st_louis/military_personnel_records.html. You can also try searching the VA site for instructions in submitting a SF 180 Request Pertaining to Military Records. The National Military Personnel Records Center has the SF 180 at www.archives.gov/facilities/mo/st_louis/military_personnel_records/standard_form_180.html. Snail mail questions go to National Personnel Records Center, Military Personnel Records Center, 9700 Page Boulevard, St. Louis, MO, 63132-5100. The nearest VA regional office can also send you the necessary form: call 1-800-827-1000. You can also contact the local benefits office in your area.
I hope this is helpful. Good luck. I personally think it is well worth it. firstname.lastname@example.org
Nancy S' April 6 reply to Derald G's April 5, 2002 - Hi, I have LBBB too and I'm on Coreg. I can only take 6.25mg twice a day due to low BP, though. When I went to a regular cardiologist, he didn't put me on it but that's the first thing the CHF doctor added when I went to him. He added Coreg and spironolactone in order to prepare me for an ICD implant, and wanted my heart to be at maximum performance before the actual procedure. I hope you feel better, Nancy. email@example.com
Tina M's April 6 reply to Christine's April 5, 2002 - Hi, I am a 26 year old from Ohio who just found out that I have cardiomyopathy. I went to the hospital on 4/1 with shortness of breath and they told me I was in CHF. In the days that followed, I was admitted to another hospital and diagnosed with the cardiomyopathy.
On Wednesday evening I had an EPS study done. I was terrified! I was awake throughout the whole procedure, but I was drugged and felt like I was in a dreamy state. I felt nothing painful. I only felt the hard beating of my heart due to the testing. They cut a small slit (so small I cannot even see it now, 3 days later) in my groin. They put a catheter in my vein and into the chambers of my heart. There they performed some kind of electrical shocks (this is how it was explained to me) into different parts of my heart to try to stimulate an arrhythmia. If they were able to stimulate one, there was a possibility that I would have to get a defibrillator. They showed me one and it resembled a Zippo lighter.
Thankfully, I went through the procedure well and it did not show an arrhythmia so I did not have to get a defibrillator implanted. As far as the driving is concerned, I have no idea. The doctor who was performing the procedure failed to even tell me that there was a possibility of getting one, let alone any details about having it. The only way I knew was from the assisting nurse, who showed me the thing.
Right now I am trying to type while holding my 4 month old son. I am very thankful to be able to hold him right now. I thank my friend Kelly for that. She is the one who convinced me to go to the ER Monday for the shortness of breath. I wasn't going to go. I blamed it on the dry heat of the office. The hospital said my EF was only 15% when I went in.
Thanks to Jon for creating this site. It's nice to have the comments and information from other people who are going through similiar situations. It makes me, someone who a few days ago was feeling hopeless and lost, feel more positive and hopeful. firstname.lastname@example.org
Betty, April 6, 2002 - Hi, I have dilated cardiomyopathy and am hypothyroid. I take synthroid for my hypothyroid and I also take Coreg, enalapril and pravachol. I also take nortriptyline for depression. I'm having a hard time keeping my TSH level in the normal range. I read somewhere that if you're hypothyroid (not taking enough synthroid) your body temperature will be below normal. Well I've been taking my temperature and mine is always well below normal. I'm wondering if any of my heart medication makes my temperature below normal? Does anyone have that problem or know the answer? email@example.com
Rick M's April 6 reply to Tom S' April 6, 2002 - Very good info for veterans, Tom. See what the New York Times had to say on the same day: www.nytimes.com/2002/04/06/health/06VETE.html. Rick. firstname.lastname@example.org
Phil S' April 6 reply to Jeffrey W's April 5, 2002 - Hello Jeffrey, I have been treated at the VA in Cincinnati since 1996. Tom S gave you a lot of information on going to the VA so there isn't much I can add except that so far they have kept me alive and pretty well for quite a few years now. They do seem to like to prescribe meds a lot so you need to keep on top of your own health and what seems best for you. I just got out of a private hospital and after being there, I like the VA better. At least they know all of my problems and the doctors will consult each other on what they should do. I am on a VA pension so my care is all free. If you have any questions about the care, please feel free to post here or e-mail me. Good luck, Phil. email@example.com
Jon's note: Nice to hear from you, Phil. :-)
Jon, April 9, 2002 - Hi everybody, I went to the cardiologist's yesterday. My left ventricle is 15% larger, my EF is 5% lower and my 6-minute walk distance went into the toilet. None the less, I don't feel bad today. <g> I am adding hydralazine to the mix tonight but am not raising my beta-blocker dose at all. We'll see. ;-)
Anyhow, I am behind on everything now and posts will go up as I am able. Jon.
John Len's April 9 reply to Jeffrey W's April 5, 2002 - Hi Jeffery, I had my first bypass surgery courtsey of a V.A. hospital some years ago. The treatment I got was first rate and they sent me to one of the better local hospitals for my 4 way bypass. firstname.lastname@example.org
Derald G, April 9, 2002 - Hi, You all probably already know this but it was new to me. I went to my doctor for a follow-up visit (non-CHF) and saw they had a pneumonia vaccine. They recommend them for people with cardiomyopathy. That makes sense for people whose lungs fill up with fluid. I insisted that I get one. I had never heard of it before. email@example.com
Tom S' April 9 reply to Phil S' April 6, 2002 - Hi, I also have been very pleased with the VA, except for the one major screw up with the pharmacy. I have literally been amazed at the quality and level of care and caring by the medical and ancilllary staff. Prior to finally breaking down and filing for VA medical benefits I had heard horror stories how they stack half dead bodies in the hallways, and interminable periods of time just waiting to be seen. I even heard stories about people who arrived at 7:00 AM and waited until early evening and then could not be seen, or had been totally overlooked by the staff.
It was a pleasant suprise when I saw none of that on my first visit to the area VA Hospital in Salisbury, North Carolina. In fact, I have an appointment for April 17th at that facility and actually look forward to making to trip to keep the appointments, which of course start with the usual blood letting.
I would remiss in not mentioning that those veterans who are fortunate enough to gain category 6 and higher either do not have to make a co-payment for drugs or treatment or would see a cap of under $1,000 a year on such co-pays. At Salisbury it is currently $850 unless financial need can be demonstrated. One other thing we failed to mention is that under certain circumstances spouses may also be eligible for VA medical and burial benefits. There is also the added bonus of being eligible for burial in a National Cemetary. In my case I plan on burial in the National Cemetary at Salisbury, which of course is free to the families. Check it out at the VA web site.
By the way Phil keep up the good fight and thanks for your addendum to my post. Bhigheart@hotmail.com
Joseph P's April 9 reply to Nancy S' April 6, 2002 - Hi Nancy, I have an ICD too. It was determand by an electrophysiologist that I needed it. I went through an EPS to see what kind of pacing I needed. Joseph P. firstname.lastname@example.org
Cindy, April 9, 2002 - Hi, I had a new cardiologist. They did an EKG and did not ask me to disrobe. This is the first time I ever had an EKG (12 lead) with my clothes on. Is this normal?? I have a rather large chest and I was wondering if this new office is skimping time and gowns. Is it normal to ask a patient (especially new ones) to disrobe for EKGs? Will it affect the validity? Thanks, Cindy. email@example.com
Jon's April 9 reply to Cindy's April 9, 2002 - Hi Cindy, Did the electrodes attach to your skin? If so, it should be fine. If you mean the electrodes were actually attached through the clothing, I have never heard of that. "Electrodes" is actually shorthand. They are properly called "skin electrodes" and I guess that says it all. Maybe a new kind of electrode is being used but I haven't heard of it. Jon.
Joe S' April 9 reply to Jon's April 1, 2002 - Hi Jon, I just saw your note about feeling like watery jello. Years ago when I felt blue I would read Lamentations. I guess I'm morbid 'cause reading your note made me feel better. I've been feeling like watery Jello for over a month now and have been completely absorbed in self pity. Pray for me; I finally have an appointment with the cardiologist today and I'm at least a little bit rational to possibly understand and listen to him, Joe S. firstname.lastname@example.org
Jon's April 9 reply to Joe S' April 9, 2002 - Hi Joe, Lamentations is sure heavy reading! <g> Hang in there, Joe. Jesus never said it would be easy but He did say He'd always be beside - and slightly in front of - us the whole way. So while you have to run the race, look at who is blocking for you and take heart! :-) Jon.
Lisa, April 9, 2002 - Hi, I have had dilated cardiomyopathy for around a year. It was first suspected to be viral or alcoholic but is now suspected to be caused by persistent atrial tachycardia. Since an ablation in December my EF improved a bit and as a result they suspect the heart enlargement may continue to decrease in size, but the cardiologists are very reluctant to say what actual recovery from a cardiomyopathy means!
Can such a damaged heart (I was a month off the transplant list at one stage) ever recover it's full strength and go on to support a normal life? I still have loads of palpitations and know I have a long way to go but there is absolutely no data on recovery of patients past 18 months after ablation. This isn't that comforting at this stage. Has anyone ever had tachycardia-related DCM? Thanks! email@example.com
Joe S, April 9, 2002 - Hi, The cardiologist told me my heart is getting better and better. My blood pressure is way down, my blood sugar was 150 and everything else was normal. Praise the Lord. My only problem is my vivid imagination and paranoia, Joe S. firstname.lastname@example.org
Lou, April 10, 2002 - Greetings fellow CHFers, I'm new around here and this is my first post. I don't want to be too long winded (no pun intended) but I've had heart problems all my life. At 6 weeks old I was diagnosed with aortic stenosis. My aortic valve was repaired when I was 8 years old but I somehow contracted endocarditis when I was 15. That led to my aortic valve leaking and having to be replaced when I was 19. I lucked out and got a homograft and I also got a pacemaker during that time.
Well, I'm 31 now and I was diagnosed with CHF back in December of last year after a 3 month bout with pneumonia and pleurisy. My doc put me on Zestril, Coreg, Lasix, digoxin and potassium. We've been monitoring the situation ever since. Everything was going well till about a month ago, when I contracted endocarditis again. I get the PICC line out tomorrow and I see a transplant specialist on the 22nd of May. The idea is to replace my aortic valve again, but if my heart won't take the surgery I'm looking at a heart transplant.
I seem to be doing okay, except I'm retaining quite a bit of extra fluid (I really overdid the food over Easter weekend) that I can't seem to get rid of. If one of y'all could give me a little insight: what do they do to drain off the excess fluid in the hospital? I see my cardiologist on Thursday and I figure he might take drastic measures. email@example.com
Jon's April 10 reply to Lou's April 10, 2002 - Hi Lou, If it's fluid retention rather than actual weight gain as in fat, IV Bumex is the standard for taking it off as an inpatient. It is about 40 times stronger than Lasix. Jon.
Tracey C, April 10, 2002 - Hi everyone, Tillamook is discontinuing their mail order cheese, which means no more low-sodium cheddar. Does anyone know of a store in the Orange County, California area that sells the low-sodium Tillamook? Thanks, Tracey. firstname.lastname@example.org
Craig A, April 10, 2002 - Hi Jon, Hi everyone, I went back to the hospital today (6 weeks after coming out with my DCM diagnosis). My EF is now 30% but was only 15% six weeks ago so it would seem my meds are working, yes? My enlarged heart is still the same size but now I don't have to see my specialist again for 3 months. Is 15% gain in 6 weeks good, or just normal? Thanks to those nice people who sent kind messages about my marital situation - it really lifted my spirits! email@example.com
Phil S, April 10, 2002 - Hi, I just spent a week in a local hospital for low blood pressure. My BP would go down to 65/48 unless I stayed in bed, and while I was in bed it still was about 80/60. The doctor kept me on dopamine for 5 days until he could wean me off it and keep my blood pressure up. Finally after 5 days, I was able to get up and I was released on the seventh day. The doctor took me off all my heart meds because they were lowering my BP too much. I was taking 50mg atenolol, 25mg spironolactone and 5mg lisinopril. He also lowered the dose of my isosorbide dinitrate and my Lasix. Does this sound right to some of you experts?
The doctor is not a cardiologist but he is an internal medicine specialist. Now my BP is either 140/90 or 95/70. I went to the VA today and my doctor agreed with the private doctor. Aren't there supposed to be other meds one can take if your BP stays too low on standard heart meds? I will be calling for a consult with a heart doctor to be sure that it won't hurt my heart in the long run to be off all the heart meds. I guess in the meantime I will have my wife read The Manual again to see what answers she can come up with.
Thanks for any input you have on this problem of mine. Maybe it is just that my heart is wearing out just a little more. Take care, Phil. firstname.lastname@example.org
Jon's April 10 reply to Phil S' April 10, 2002 - Hi Phil, I am not a doctor but this sort of sounds like overkill to me. It would seem wiser, if possible, to remove the beta-blocker first since it may have thhe greatest effect on your blood pressure, and then let you stabilize and see what the result is before removing your other heart meds. Many CHFers with low blood pressure are able to tolerate an ACE inhibitor. By taking you off a bunch of meds at once, he has prevented you from finding any possible happy medium where your heart gets help but your BP is livable.
Also, as Marc Silver says here (let it load - question number one), maybe you should be tested to see if a biventricular pacemaker could substantially improve your heart function. Just a couple of thoughts, Jon.
John, April 10, 2002 - Greetings all, I am a 32 year old male who was diagnosed with DCM about 1 1/2 months ago. I had an angioplasty to try and discover what was going on because I was having persistent breathlessness and occasional palpitations. Well anyway, the doctor who performed the angioplasty diagnosed me with DCM. My EF was 40 to 50%. I was quickly put on 10mg accupril and I began to feel somewhat better.
After about 3 weeks of being on accupril, the doctors say I have no signs of cardiomyopathy and I have had several opions verifying this (stress echo, regular echo). My EF is now something around 65 to 68%. I still have a bit of breathlessness on occasion, but they say I have a great future and no DCM. Has anyone else had similar results? I'm confused. I did have borderline high blood pressure 140/90 for a long time and the accupril lowered it considerably. Could that be it? Nightlaw@earthlink.com
Diane P, April 10, 2002 - Hi, Okay I had low sodium down, now I am also diabetic. Does anyone have a good site or source of recipes that are low sodium, fluid restricted, low fat, diabetic? I think the carboard box that some food comes in has too many carbs. God bless, Diane. email@example.com
Derald G's April 11 reply to Tracey C's April 10, 2002 - Hi Tracy, They have a link to distributors. Call any of the retail distributors below in your area and see if they carry your cheese. They might even order it for you if they don't. In southern California: Albertson's, Food 4 Less, Cost U Less, Costco, Gelsons/Mayfair Markets, Ralph's, Von's, Sam's Club, Stater Brothers, and Unified Grocers member stores.
Tillamook Cheese can also be found on a national basis east of the Rockies at independent stores and at most of the following: Albertson's stores, Associated Grocers member stores, Costco, Sam's Club, and Wal-Mart Supercenters. firstname.lastname@example.org
Tina Mount, April 11, 2002 - Hi, This is a question for the women. I know the doctors told me to weigh myself every day to check for any water retention. How do you account for this during your menstral period? No one ever mentioned this, and I wasn't sure about it. Thanks, Tina. email@example.com
Jon's note: That's a very good question!
Bernard Z, April 11, 2002 - Hi, I want to thank God and congratulate my CHF doctor for bringing me safely to my sixth anniversary of heart failure, HCM and secondary PH. There is some truth to the 5 year rule; that's how long it took me to find a doctor that knows more about the heart than stents and bypasses. <g> He (read "they") brought me through atrial flutter and a blood clot this winter.
A word to anyone who hasn't found a CHF specialist, "Keep looking and praying! The life you save will be yours." firstname.lastname@example.org
Jon, April 11, 2002 - Hi everyone, Please do not worry if posts are really sporadic for the rest of the week. I have a heavy slate of personal/site matters to deal with tomorrow and a company has donated a free search script that I have to get running so the site will be properly searchable again. It all takes time and I am going to have to put some of it ahead of the posts if this site is ever going to be fully functional. :-) Jon.
Ruthie A's April 11 reply to Diane P's April 10, 2002 - Hello Diane, I identify with your dilemma more than you can imagine. In fact, I am seeing a dietician on Monday to help me with this very problem. It seems that I can come up with a successful CHF/low-sodium diet or a successful diabetic diet, but not both. One of my old doctors told me that the best way would be to cut food out of my diet altogether! Yeah, right. In the meantime, I use a great web site as a resource for recipes and menu ideas. It's www.diabetic-recipes.com, and it has a lot of information that you may find helpful. Best wishes, Ruthie A. email@example.com
John Hunter, April 11, 2002 - Hi, Okay I'm new here and want to thank Jon for everything; you gave me more info in an easy to read format than all the docs did. I was diagnosed with DCM about a year ago. My EF was 10% when I went into the urgent care for help. After leaving the hospital I followed the low sodium diet and popped my pills: 100mg Toprol-XL and 20mg Prinivil. All seemed fine. Last month I had a severe chest cold and now seem more short-winded. I continue to cough up clear, thick sputum. Can anyone tell me if this is my CHF coming back? I lost my job and insurance after 9/11 so I can't just go see my doc to find out. firstname.lastname@example.org
Noelle's April 11 reply to Tina Mount's April 11, 2002 - Hi, I just found this site. It's amazing, just what I have been looking for. Tina, the way I handle my period is if I gain 2 pounds and am out of breath or just not feeling right I have permission to take a extra water pill and mark it on my weight chart. The doctor will see this as only a temporary problem that goes away at the end of the week. I know my body and symptoms and the doctor gave me a little control there.
If happens at other times or for longer than 3 days or so, I call the doctor. I have had cardiomyopathy and heart failure for one year now. I am 40 years old with 2 children. My oldest is 10 and the youngest is 7. email@example.com
Pat H, April 11, 2002 - Hi, I suddently developed CHF in 1991. All types of tests were performed but they couldn't figure out why. At that time they determined I had a congenital bad aortic value. I was put on medications and had an echo every year. I was doing great with my EF up from 28% eleven years ago to 57%, and I was enjoying walking on the treadmill every day.
Then my cardiologist died from a heart attack (go figure) and I had to go to a new one. He ran a lot of tests, including a stress test and took me off Lanoxin. About 1 1/2 years later after an annual echo, I was told that my heart was starting to dilate again. I had a cath done, contacted a surgeon, and had an aortic value replacement plus 2 inches of aorta. My recovery was normal (ouch!). Both the cardiologist and the surgeon said I wouldn't have to take any heart medication thereafter, except Coumadin.
When I first started walking again on the treatmil I was doing fairly well, then my SOB started and I kept going down. The doc put me on Toprol-XL and when I complained of fatigue, he switched me to Coreg. I continued to have problems with SOB, which culminated in my going into the hospital last Friday with CHF again. I am disappointed because I thought I had that baby whipped, since the docs said I did. I am now back on 7 heart meds in all. This has really been a whirlwind experience. I promise to be good, take my meds, and exercise. I hope I can get better. My EF is 30%.
Can anyone give me a word? Has anyone experienced similar problems? I am working on a positive attitude but it's not always easy. I went right back to work and am doing okay. Thanks a lot for any input. firstname.lastname@example.org
Karen F's April 11 reply to Tina Mount's April 11, 2002 - Hi, This is what worked for me. I have my weight chart set up as a spreadsheet in Excel. Date, day of the week, weight, pounds lost or gained (gained pounds are in red font to catch my attention) and comments. When I have my menstrual period, I put an X in the beginning of the comment section for that day. Other comments might include if I did anything unusual like attend a wedding reception (which could throw my sodium intake off) or if my meds were adjusted. With this chart, I can print out the appropriate pages (I start a new page in the file each month) to take along to my doctor. He loves it!
Anyway, if you mark an X every day you have flow, in a couple of months you will be able to see your body's own pattern and take it into account in your daily weights. I usually run 3 to 4 pounds high the couple of days before my flow starts and it falls off in the first two days after the flow begins. So seeing that jump and realizing where in my cycle I am, I know not to panic at that moment, but if the fluid wouldn't be naturally lost with a couple of days, I would consult my doctor. email@example.com
Brandy, April 12, 2002 - Hi, I got my echo report in the mail today. Here is what it said:
What classes are the diastolic dysfunction? I know it means that my heart doesn't relax, but to what degree and what does it mean? If someone could help I would be very obliged. firstname.lastname@example.org
Mike W's April 12 reply to John Hunter's April 11, 2002 - Hi John, But you must seek treatment! It was almost the exact same situation that led me to get really sick and be shortly thereafter diagnosed with CHF, having about 45 pounds of extra fluid in me, unable to breathe even sitting up, and looking like I was dying - I was grey! Now, I'm no doctor and I was not diagnosed beforehand, but I am convinced I had penumonia. My doctors have not agreed or disagreed, but say the possibility is there.
My point is that if you have been diagnosed with CHF, have or have had an EF of 10%, and are experiencing the symptoms you just described, I would have to say that for you to not seek treatment would be, well, kind of crazy. Go to a local emergency room and tell them your history and concerns. They have to at least check you out. They can't turn you away by law. Take care of yourself and good luck, Mike Wafkowski. email@example.com
Jacky, April 12, 2002 - Hi everyone, I am back from 4 weeks in the United Kingdom. I had a great time visiting family. I paced myself so I had no problems. I am sorry to hear you are having more problems, Jon. How is everyone else? Jon, did your symptoms worsen or do you have regular tests for EF and if so, which! Thanks. Take care y'all, Jacky. Jackymwb@aol.com
Jon's April 12 reply to Jacky's April 12, 2002 - Hi Jacky, My symptoms got worse. However, this coincided with a scheduled checkup at my CHF doc's. He does tests depending entirely on the individual patient's situation. I had an echo, 6 minute walk test, and blood tests done 4 months ago and he repeated all these Monday. Neither one of us knows for sure why I am doing worse but he's working from his experience and that, I trust. He's very good.Jon.
Jon's April 12 reply to Brandy's April 12, 2002 - Hi Brandy, Often in patients with diastolic dysfunction, a stage system is used to describe hypertension. Do you have high blood pressure? Stage 3 hypertension is - I think - a systolic pressure over 179 mmHg or a diastolic pressure over 109 mmHg. See www.physsportsmed.com/issues/1999/04_99/macknight.htm for starters. High blood pressure over a period of time is a common cause of diastolic dysfunction. If your BP is not high, I have no idea what stage 3 means.
There is a CHF stage 1, 2, 3 system (Bottoroff) but it is not a standard and is so rarely mentioned that I have only seen it once. It refers to systolic failure. Unfortunately, the term "stage 3" is used so often in cardiac medical literature that it can mean almost anything unless you know exactly what the doctor in question is referring to. If yours is actaully referring to "diastolic dysfunction" I have no idea what he means. Sorry. If you find out, please let us know! Jon.
Scott Brown's April 12 reply to John Hunter's April 11, 2002 - Hi John, You are going to need to see a doctor. Even if someone on this message board gave you advice, it would be speculation. It is likely to be as simple as fluid accumulation while your body was weak. You need to take water pills (diuretics) to help remove the fluid from your body. You could try a natural diuretic like coffee, but you get into a problem because the coffee itself is a fluid and speeds up the heart, which isn't good. Restrict yourself to one to two liters of fluid a day for a few days (and stay on a very low sodium diet). If you start feeling better, you are on the right track. I feel bad for your situation. I hope things work out well for you. firstname.lastname@example.org
Scott Brown's April 12 reply to John's April 10, 2002 - Hi John, Your post is confusing to me. Maybe someone else can set me straight. Your EF is now 65 to 68%? I think 50 to 55% is normal. I'm not sure what an EF that high means. The angioplasty technique is usually used to clear a blockage. Often they leave a stent behind to keep it open. They do not usually use this procedure to see that is going on with your heart.
I don't think DCM gets 100% better in less than a month. Are you SOB at rest or when you exercise? Were you in good shape before? Do you have asthma or any other respiratory problems? Scott. email@example.com
Jon's April 12 reply to Scott Brown's April 12, 2002 - Hi Scott, A "healthy" EF is 55% or higher. I believe that up to 70% is within normal range.
Angioplasty is done via cath and so is often confused with diagnostic cath, which also uses a catheter based procedure in the same cath lab. The difference is that a diagnostic cath does not clear blockages. However, often if a blockage is suspected, you may go into a diagnostic cath with the understanding that an angioplasty will be done if significant blockages are found.
I am not a doctor. Assuming his doctors have not made any big blunders, in John's case his EF was only barely under normal at diagnosis so it is possible that his chronic hypertension did not permanently damage his heart. He may be one of the lucky ones who got such a quick diagnosis after onset that drug treatment restored all heart function. Life-long ACE inhibitor use to prevent relapse may be all he needs. I just don't know. Jon.
Dave K, April 13, 2002 - Hi there folks, For those of you having trouble with low salt and diabetic diets, try the good spit diet. If it tastes good, spit it out, good ole Dave. firstname.lastname@example.org
Lori K, April 13, 2002 - Hi, My first message got messed up so I am trying again. I love this site and am looking for some help with a few things. I was diagnosed with DCM 5 months ago. I am 43 and have LBBB for reasons unknown, and have mild asthma. I have been complaining of SOB for a year and my PCP kept giving me more asthma drugs. I had a URI almost every month last winter.
Finally, I went to a cardiologist who did an echo and told me my heart was weak and I needed to go on Altace and Zebeta. My CHF doc thinks my cardiomyopathy is from long standing systolic hypertension (borderline). However, my blood pressure was low until 4 years ago. My regular cardiologist thinks it is probably a combination of a virus and hypertension.
Anyhow, I have developed parasthesia (tingling and numbness in my left hand and face). Both cardiologists think it is not heart-related, but it just started 2 weeks ago, after starting the beta-blocker. Has anyone ever had this? Could this be tied to an abnormal nervous system related to CHF, or a clot? I am baffled and of course I did make an appointment with a neurologist in 2 weeks. Also, my cath showed two vessels with 10% plaque, but otherwise fine. My EF went from 38% on diagnosis to 55% on my cath at 2 months. I thank God for that.
I also have chest pain (it feels tight) on and off. If the pain is not from blockage or arrhythmias, is it likely spasm? Sorry for the length but I sure could use some perspective! email@example.com
Jon's note: URI?
Ruthie A's April 13 reply to Brandy's April 12, 2002 - Hi Brandy, Like Jon, I am not a doctor. However, I have diastolic dysfunction too. My CHF doc uses the "generic" stages to identify my condition, just as he does those patients with systolic dysfunction. The problem here is that so little is understood about diastolic dysfunction. There are no standards for treatment, prognosis, etc. The vocabulary is vague at best so many doctors use the same terminology to describe both types of dysfunction. The best thing to do is to call your own doctor and ask what those terms mean to him. This should open a good dialog to help both of you get on the same wavelength so that you can receive the best treatment for your condition. Wishing you the best, Ruthie A. firstname.lastname@example.org
Maggie S, April 13, 2002 - Hi Jon and everyone, I am going into the hospital next week for a mitral valve repair (2 leaks) and a tricuspid valve repair. They may possibly do an ablation also because I am in atrial fib all the time. This has not been completely decided yet. I have very poor cardiac output and am unable to tolerate Coreg, except at the smallest dose. The physicians think I will feel better after this surgery. I am also in the Acorn Net study, passed the criteria but when randomized did not get chosen for the treatment group. I was somewhat disappointed but happy they are going to do the valve repair since my stamina is very poor.
I could use your prayers, and good thoughts. My family has been wonderful but I hate to have to depend on them for everything, since I've always been an independent person. Thanks for your thoughts, Maggie. email@example.com
Joe S, April 13, 2002 - Hi, I need some serious advice. Nearly 6 weeks ago I had my aortic valve replaced along with a small artery. From that point on, my health has gone downhill. I have written to the the doctors and seen them twice with the only answer being to be patient. On the 8th I saw my cardiologist in such a dizzy mood I had to have my wife talk to him. He said just be patient and that I may not be well for 6 months. I lost 24 lbs in fluids in two days in the hospital and they didn't even care. At 8:30 on Tuesday 20 minutes after taking my meds I had a massive chest pain going down both arms and legs. My wife called 911 and I was finally taken the 80 miles back to the hospital.
For two days I was in outer space as they did heart x-rays, CAT scans, echos, EKGs and a stress test. Yesterday morning I decided to not take my meds until I saw the doctor. I finally saw him at noon and he told me my pain was not heart related but probably wound-related from surgery; that I was to keep up the meds and live with the lightheaded, dizzy feeling. I ate lunch and took the meds an hour later and again got so dizzy I could barely stand up.
The meds are 50mg atenolol, 40mg Prinivil, 40mg Lasix, 0.125mg digoxin, 20mg Pravachol, and no more potassium. They want me to take Lipitor even though my cholesterol is good. During my 3-day stay I also lost 23 lbs. Any advice on what to do from anyone would be greatly appreciated. I told the doc I would rather die then lose my mind. Of course, mortals like us don't have minds. Joe S. firstname.lastname@example.org
Jon's April 13 reply to Joe S' April 13, 2002 - Hi Joe, I am sorry to hear you are having such a rough time. First, I must say 2 things : I am not a doctor and I don't know whether your lightheadedness and confusion are signs of something serious or not. With that said, you are suffering from symptoms that are not unusual after heart surgery. You can read more about it at http://www.chfpatients.com/surgery.htm#brain_and_bypass (let it load). Sometimes patience really is required because time is the healer. Whether this is the case with you or not, I have no way to know, but it's something to consider.
It does really gripe me that so few surgeons and cardiologists tell their patients upfront about these kinds of risks before surgery. I hope these problems fade and that you see real improvement over time from your valve repair, Joe. Jon.
Tina Mount, April 13, 2002 - Hi, I went to the cardiologist yesterday for a checkup. He told me that I need to come back in two months for another echo to see how I am doing. He also mentioned that I may have a hole in my heart and I will have to get that echo with contrast (dye). This scares me, because isn't a having a hole bad? I'm new to all this so I may be wrong, especially since he wants to wait 2 whole months to check on it! The doctor gave me a video to watch too. It's about the drug Coreg, that he wants me to try. Does anyone know anything about this med, good or bad? Thanks, Tina. email@example.com
Jon's April 13 reply to Tina Mount's April 13, 2002 - Hi Tina, One thing to keep in mind is that if you've had a hole in your heart for who knows how long, it hasn't caused anything drastically tragic in your life yet, so it may not be a big deal. You'd be amazed how many people have such defects and go through life just fine. That may or may not be your case but it is certainly something to remember. :-)
You can find everything you want to know about Coreg on the Coreg page. Use this page to get started finding things at CHFpatients.com. A site search engine is halfway to completion now. I am finally figuring out how to filter and crawl only the appropriate pages for each category. Jon.
Tina Mount, April 13, 2002 - Hi, Is it safe to go to the tanning bed with cardiomyopathy? firstname.lastname@example.org
Lori, April 13, 2002 - Hi, I have more questions. I understand there is a problem with giving beta-blockers to those with LBBB. Does anyone know what the problem is? I have LBBB and asthma, and I am on Zebeta instead of Coreg, which my cardiologist would prefer. He said the problem was my asthma so I need a selective beta-blocker (Zebeta, Toprol-XL). Is anyone out there on Coreg with moderate asthma? I would love some help. Thanks again to everyone, Lori. email@example.com
Lisa, April 13, 2002 - Hi, I have not posted in awhile but do keep up with the posts. I was diagnosed last year with cardiomyopathy and CHF. I have been doing so much better since then. I have not been sick with a cold or the flu since my diagnosis. Now I feel like I am coming down with something. I have had scratchy throat and have felt achy. Also, I have been really short of breath, more that usual. I was wondering what some of y'all have experienced when having a cold. I'm just a little worried it is my heart and not a cold. Thanks for any suggestions and God bless, Lisa. firstname.lastname@example.org
Joseph P's April 13 reply to Tina Mount's April 13, 2002 - Hi Tina, I take 200mg Pacerone once a day and it has a warning about being exposed to sunlight or an artificial sun lamp. I feel like I have been roasted in the desert, Joe. email@example.com
Jon's note: Lasix also increases your sensitivity to sunlight
Amelia, April 13, 2002 - Hi everyone, Jon, I sure hope you are feeling better, as well as everyone else with sick hearts. I think I understand what EF is and both my internist and CHF doc agree that one can still feel rotten even when it goes up. My question is, "Is this so with only patients that have a very advanced condition or with any stage of heart failure, even though one is stable?"
I was in the ER Monday. On Sunday I couldn't get out of bed and that was a first for me. After all the monitoring and tests, my doc said I wasn't in acute heart failure except I am now having premature supraventricular complexes, and the QRS axis shifted left and QT has shortened, intra-ventricular conduction delay, and T-wave abnormality and left axis deviation, whatever all that means. I have an interatrial septal aneurysm and right to left shunt.
I am on Vasotec, Toprol-XL, Lasix, and Coumadin. He is thinking of changing my meds, hoping I will feel better since he thinks this it is not my heart. They also found that my blood cell counts are both low and I am going through a battery of tests to be sure I am not having some bleeding going on. Can this be from the meds or from heart failure? I thought I was handling this well but now am very confused and wanting to know what is causing me to feel so rotten.
Any info you have to offer would be appreciated. I know this is the site to get the info and support one needs to cope with CHF. Best to all. firstname.lastname@example.org
Joe W, April 13, 2002 - Hi, Well the endless saga of SSD continues. I applied in December of 2001, and received two letters from them requesting further information. Than last month I had my medical exam with their doctor, who unofficially told me I am a disabled person. Go figure. Well today I received another letter informing me that they, the SSA, want to talk to me. I will be talking with the person making the decision as to my disability. The SSA call it a "Claimant Conference."
Has anyone out there gone through this before? It seems to me that it's another way to prolong the decision but I'll wait. What other choice do I have? Our government at work. Thanks for listening. email@example.com
Cate Moore, April 13, 2002 - Hi Jon and all, URI stands for upper respitory infection. I come here daily and find an enormous amount of comfort here. I don't post because I am uneasy talking about myself, or my problems. As time passes I may loosen up some. God bless and be good to yourselves, Cate Moore. MoorCrzyCt@cs.com
Jeremy, April 15, 2002 - Hi, Has anybody any advice on the Akins Diet? I have DCM and CHF and need to reduce weight if I am to transplant. firstname.lastname@example.org
Jon's April 15 reply to Lori's April 13, 2002 - Hi Lori, I asked a CHF doc about asthmatics and beta-blockers, and about BBB. Here's a paraphrase of what he told me.
People with true asthma and a tendency to wheeze don't do well with beta-blockers because they can encourage the smooth muscle around airways to contract, causing wheezing. Most people with CHF and lung disease don't have true asthma with "reactive airways" that tighten up and cause wheezing; they have COPD that does not worsen much with beta-blockers. Selective beta-blockers are selective primarily at low doses. At heart failure treatment doses, their selectivity is largely lost.
Bundle branch block is not a major contraindication to beta-blockers. This just means that the signal passes through the muscle slowly (Jon's note - I address this on my pacemaker page). Some forms of AV block (atrio-ventricular block) are a contra-inidication to beta-blockers in cases where there is already an interruption of electrical signal passage between the atrium and the ventricle. In these cases, the ventricular contractions could slow greatly and cause blackout or worse if beta-blockers are added. Similarly, baseline heart rates of about 60 or less could slow even more with beta-blockers; and dose increases are hazardous if the patient does not have a pacer in for another reason as backup.
I hope it helps, Jon.
Tom S' April 15 reply to Cate Moore's April 13, 2002 - Hi Cate, Don't feel bad. We all face a certain amount of guilt with this thing called CHF and alphabet soup of other heart-related disease. Personally, I have seen a full half dozen people I have been directly associated with - whether it be church or social contacts - that have dropped dead with little or no warning and here I'm the "dead man walking" still kicking, complaining and breathing when by all accounts it never should have been this long. On Saturday I learned of a woman I had worked closely with on various church related projects (even though I personally don't attend that church) died in her sleep. She was the picture of health. A month ago a 54 year old woman that had been particularly kind to my family when I was diagnosed as being terminal succumbed to a virulent case of cancer. That is the second person who helped me who has died of cancer. Three others have died of either accident , one got hit on the head by a tree limb while jogging (44 years old), and the others died of natural causes.
Sometimes I shake my head and realize we are given a certain amount of time and we'd better make the best of it without complaint. So feel free to post your compliments and complaints. Believe me, you are among friends. email@example.com
Bob N's April 15 reply to Tracey C's April 10, 2002 - Hello, If this cheese is in your area get it: it is from heluva good cheese company. I think it is nationwide. They have a great low sodium cheddar cheese. I use it on my homemade pizzas all the time. if you need their address, just e-mail me. Good luck, Bob N. firstname.lastname@example.org
Jon's note: Hey Bob, If you don't mind, would you post their address here? Thanks
Jon, April 15, 2002 - Hi everyone, I finally got a search engine running. Fluid Dynamics donated a full site search engine but it took me days to figure out how to set it up to properly crawl my site and return results and all. If you run into any problems with it, please let me know. It does not search recipes or bios or some other stuff yet because I don't have those sections rewritten and moved yet. I'll add an option to search my whole site instead of just sections when I get everything moved but for now, it seems okay. :-)
You can search from the site index page or The Archives page for now. Jon.
Joseph P, April 15, 2002 - Hi, Has anyone had experience with colace for constipation? I have been having some problems with this and the doc told me to use colace and so for it doesn't work. I have also gained 5 lbs since I have taken it. I still have movement but not too frequently. Can any suggest something else that agrees with a CHF person? Joseph P. email@example.com
Jon's note: Have you tried 400mg magnesium at bed time?
Lori K's April 15 reply to Amelia's April 13, 2002 - Hi Amelia, A similar situation happened to my father-in-law. His red blood cell count was low from his CHF. In his case they said his CHF was advanced (he had a heart attack 15 years prior) and that anemia was common.
Also, I don't know how long you have been on your ACE inhibitor or at what dose, but they can cause granulocytopenia, meaning low white blood cell counts. It is important to know which cell counts are low. It sounds like the platelets must be low if they are concerned about bleeding. I am a medical technologist and all my training is in hematology. Maybe I can help. I am not a doctor, so stay on top of this with your cardiologist for sure! Lori. firstname.lastname@example.org
Craig, April 15, 2002 - Hi, I hate to seem dumb, Jon, but could you please tell me what <g> means? email@example.com
Jon's April 15 reply to Craig's April 15, 2002 - Howdy-doo, <g> means grin and <lol> means laughing out loud and <rofl> means rolling on floor laughing. They are a form of emoticon - a way to express emotion in text-only format. Jon.
Derald G's April 15 reply to Lori K's April 13, 2002 - Hi Lori, I'm pretty close to you but don't really know yet what kind of cardiomyopathy I have. My BP has been border-line high for years. Anyway, I'm 45 and have LBBB too. Also, I occasionally get a numbness in my left hand and a twitch in my left eye. I get chest pains: tightness and an achey kind of pain. It's not as bad as a toothache but can last for hours.
I finally after 3 months get to see a CHF specialist on Friday. I'll let you know what they say about my symptoms, it might give some insight into yours. firstname.lastname@example.org
Tammy B, April 15, 2002 - Hi, This is my first time posting although I am always reading the posts. Last July I was diagnosed with DCM with an EF of 20%. Since then, I have continued to get better, learning to eat low sodium and becoming a stay at home mom (big change from a workaholic!). Things have been steadily getting better. In December my EF was 40%.
The past month I have been having weird symptoms: burning when I breathe that feels like I've been running, tingling in a finger on my right hand, slight weight gain, more fatigue. The cardiologist answered with, "You might have a gallbladder problem, you might have a blood clot in your arm or pinched nerve, and you need to increase your Lasix." At my last visit, he made changes to my meds to 100mg Cozaar, 25mg Atenolol, 120mg Lasix, 40mEq Potassium, 81mg aspirin, 100mg thiamine, 200mg amiodarone, and 0.25mg digoxin. Last week I started having PVCs. They got worse the more active I became. I finally got scared enough to call and was sent to the ER. They admitted me for CHF again.
The x-ray showed an enlarged heart, an echo showed EF improvement to 45%, and the abdominal ultrasound is pending. The cardiologist said to stop taking amiodarone and half of the digoxin. He also told me that the Lasix does not appear to be working enough, and added Zaroxolyn 2.5mg "as needed."
Could this be because I always retain fluid in my abdomen? They drained off 10 lbs of fluid with IV Lasix and zaroxolyn while I was there. I'm also curious about how could my EF be better and I am decompensating? I'm now waiting for the amiodarone to get out of my system. I hope that it does before these PVCs drive me crazy! Thank you Jon, for all that you do! 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.