The paperwork never ends The Archives
June 16-31, 2006 Archive Index CHFpatients.com

Michele F's 6-16 reply to Miranda W's 6-15     prognosis with heart failure
 
Mary C's 6-16 reply to Miranda W's 6-15     prognosis with heart failure
 
Jon's 6-16 reply to Miranda W's 6-15     prognosis with heart failure
 
David W's 6-16 reply to Miranda W's 6-15     prognosis with heart failure
 
Martha W's 6-16 reply to Jon's 6-15     Accomplia information
 
Jon's 6-16 reply to Martha W's 6-16     the FDA and Accomplia
 
Mary C 6-16     experience with new cardiologist's staff
 
Ruthie A's 6-16 reply to Mary C's 6-14     diastolic heart failure experience
 
Donna V 6-16     what is a medical food?
 
Jon's 6-16 reply to Donna V's 6-16     medical foods
 
Mary C's 6-17 reply to Ruthie A's 6-16     seeing my next cardiologist & more
 
Debra S 6-17     seek CHF specialist in Oakland county, Michigan
 
Donna V's 6-17 reply to Jon's 6-16     thank you for the information
 
Donna V 6-17     sorry to report a death
 
Tony T 6-17     calcium channel blocker with heart failure experience
 
Donna H's 6-17 reply to Mary C's 6-14     numbers are not the whole story
 
Mary C 6-17     medical records very informative
 

Bill H's 6-18 reply to Miranda W's 6-15     attitudes can change for the better
 
Linda K's 6-18 reply to Deb 6-12     low blood pressure experience
 
Kim H 6-18     seek others with PPCM
 
Roger H's 6-18 reply to Mary C's 6-16     the right doctor, attitude, info all count
 
Mary C's 6-20 reply to Bill H's 6-18     attitude
 
Mary C's 6-20 reply to Roger H's 6-18     doctors
 
Greg B 6-20     new CHFer, stem cell therapies
 
Mary C's 6-20 reply to Linda K's 6-18     edema, diet & more
 
Jon's 6-20 reply to Mary C's 6-20     edema, feeling full, diet, books
 
Jackie G 6-20     seek experiences similar to this one, please
 
Ann L's 6-20 reply to Kim's 6-18     finding others with similar experiences & more
 
Michele F's 6-20 reply to Kim's 6-18     get a specialist and more
 
Mary C 6-20     does anyone know of Dr. William Grossman?
 
Martha W 6-20     ask your doc for drug samples
 
Doug H 6-20     should I call my doc?
 
Kris P 6-20     colonoscopy prep and ICD zaps question
 
Bill H 6-20     seek gastric bypass experiences
 
Jon 6-22     doctors, tests, sickness, blaaaah
 
Martha W's 6-22 reply to Greg B's 6-20     who exactly will get better? who knows?
 
Doug H 6-22     low diastolic pressure
 
Mary C's 6-22 reply to Jon's 6-20     coping with heart failure
 
Karen K 6-22     do benefits change when you turn 65?
 
David W's 6-22 reply to Bill H's 6-20     gastric bypass surgery experience
 
Bridget K 6-22     how can I help my dad be more comfortable?
 
Blanche A 6-22     need ideas on painful muscle spasms
 
Mary C's 6-22 reply to Ruthie A's 6-16     will be seeing a diastolic HF specialist
 
Robert B 6-22     is lower humidity easier to take?
 
Barbara K 6-22     would like someone to talk to
 
Audrey R 6-22     seek ideas on thyroid meds interactions & more
 
Marie J 6-22     is depression going to stay with my husband?
 
Jon's 6-22 reply to Barbara K's 6-22     e-mail address
 
Linda K's 6-22 reply to Bridget K's 6-22     getting out of Club Med helps & more
 
Linda K's 6-22 reply to Blanche A's 6-22     that pain has got to go
 
Martha W's 6-22 reply to Marie J's 6-22     depression and heart failure
 
Ben B's 6-22 reply to Marie J's 6-22     depression and heart failure
 
Sharmesa W 6-22     should I try anthing else?
 
Eugenia R 6-23     seek suggestions on stomach swelling
 
Wayne R 6-23     treatment must be individualized
 
Marie J 6-23     thanks to all for responses
 
Mary C's 6-23 reply to Sharmesa W's 6-22     keep learning, ask questions, get another opinion
 
Mary C's 6-25 reply to Robert B's 6-22     humidity and heart failure
 
Bill H's 6-25 reply to Robert B's 6-22     humidity and heart failure
 
Mary C 6-25     tomatoes and freezing
 
Cheryl C 6-25     Mrs Dash web site for low sodium
 
Betty L's 6-26 reply to Mary C's 6-25     tomatoes and freezing
 
Jack D's 6-26 reply to Mary C's 6-25     freezing fresh foods
 
David W's 6-26 reply to Mary C's 6-25     freezing tomatoes
 
Pat R's 6-26 reply to Mary C's 6-25     freezing tomatoes
 
Cheryl C's 6-26 reply to Mary C's 6-25     freezing tomatoes
 
Dilip K 6-26     questions about supplements
 
Jon's 6-26 reply to Dilip K's 6-26     adding and using supplements
 
Pat R 6-26     humidity and heart failure
 
Mary C 6-27     thanks for freezing food tips
 
Mary C's 6-27 reply to Pat R's 6-26     safeguarding electrical power
 
Mary C 6-27     what should I take to exam?
 
Mary C 6-27     interactions between drugs and herbs
 
Martha W 6-27     freezing and cooking tomatoes
 
Roger G 6-27     cardiac device recalls
 
Jon 6-27     FDA info pages
 
Sharmesa W's 6-30 reply to Mary C's 6-23     does anyone else get this feeling?
 
Mary C 6-30     seek DHF experiences with diuretics & blood sugar
 
Kathie P 6-30     freezing tomatoes and sauces
 
Peggy A 6-30     seek suggestions on symptoms during "episodes"
 
Mike H 6-30     seek experiences with Paxil and heart meds
 
Faye B's 6-30 reply to Doug H's 6-22     seek opinions on really low blood pressure
 
Rebecca J 6-30     seeking CHF doc in Newport Beach, California
 

Michele F's June 16 reply to Miranda W's June 15, 2006 - Hi Miranda, My brother also was diagnosed with heart failure and believe me, I was scared that he was going to die within a short period of time. The first doctor he saw in Florida even told him to make "end of life" plans. Since that time, we have switched doctors (and states - we're now in New Jersey) and through our research (of which this site is a fantastic source) we have learned that people can lead full, productive lives for many years. Do not dispair! Have your brother learn all he can about managing his condition. Also, the more you know about it, the better you'll feel also. mmfoy@comcast.net


Mary C's June 16 reply to Miranda W's June 15, 2006 - Hi Miranda, In The Manual you can read about mortality. Now when I read this, I almost cried but then I thought, wow, everybody is dying. It is part of life. While these are statistics, people beat statistics all the time. We used to call them miracles. Anyway, I digress.
     A positive attitude, faith in something or someone is very important. A positive environment (home life) is very important. Life style changes are very important as is caring enough to know enough to get the right care. Eating right, drinking right, supportive family, friends, prayer chains, church, whatever, really can blast statistics. Look at Jon, he is 2 years past the due date. Thank you, Jesus. So read The Manual.
     When I was recovering from my second heart attack, I had an uncle in the hospital with a heart attack, post-open heart surgery. I had another uncle on his way to visit him who died of sudden cardiac death on the way to see him. My dad died 20 years ago of a massive stroke so I feel I beat the statistics already.
     I had no surgery. I had only minor damage and I am still alive, I didn't stroke out. I survided a painful angiogram without meds. Numbers are just that - numbers. Build him up. Love him, and show him The Manual. You already know in your heart about the wife. Enough said. MHCarrs@aol.com


Jon's June 16 reply to Miranda W's June 15, 2006 - Hi Mary and Miranda, Actually I am in year 13 of heart failure and was diagnosed 12 years ago. I started all this with an EF of 13% and a Vo2max of 13.5. Those numbers are now 55% and 30. Please read about statistics (let each link load and it will go straight to the right place on each page) at chfpatients.com/archives/archive8-2001a.htm#Jon8-2replyDonC8-2 and chfpatients.com/heartbytes.htm#mortality_improved. Jon.


David W's June 16 reply to Miranda W's June 15, 2006 - Hi Miranda, When I was diagnosed in August of 2000 my ejection fraction was 14% and the docs only gave me one or two years. I was morbidly obese at over 300 pounds. I did not give up. I lost a little weight and in October of 2003 I had gastric bypass surgery and lost a lot of weight - over 100 pounds. I did everything I could to get better. I exercised, did not drink alcohol, and I never smoked anyway. You have to work at trying to get better but you can.
     I had a pacemaker put in last week as it was the only time the docs offered to do anything at all for my heart. I am going on 6 years after diagnosis and I am much better than I was. I think maybe I will continue to get a little better.
     What I am saying is there is hope if you work at it. I have read this site since since I found it soon after diagnosis and it really has helped. Jon has lots of good information and is very helpful. If your brother quits alcohol, loses some weight, and works at getting better he has a chance. I have already lived a lot longer than the docs ever thought I would live and your brother can too. wilsond537@aol.com


Martha W's June 16 reply to Jon's June 15, 2006 - Hi Jon, I replied in private but thought the other readers would want to share, too. Accomplia has not been approved by our FDA. As you said, they aren't meeting until November of this year so the likelihood of getting this new drug approved this year is remote.
     The weight loss of 20 pounds when you're 200 lbs or more is insignificant in itself, but if this medicine can aid in other diet measures, then I think it's worthwhile. I read that dieters averaged a loss of 5% of their body weight, so there could be more or less than that 20 pound marker. The reports said that cutting calories by 600 per day was recommended and Accomplia helped obtain that goal.
     It does seem to help with type 2 diabetes, cholesterol and other heart stressors. The reason (I think) the FDA is dragging it's heels is that in a certain percentage, it seems to cause fairly significant depression. I guess if you lose your appetite, your desire to smoke or have a drink, anything would make you depressed!
     My immediate goal is that 20 pounds lost. I actually need to lose about 50 but breaking it into increments makes it more do-able. So I'll continue to work on my food intake, but the minute it comes on the US market, I want to sign up for it! Martha. mwells@ppfs4.tamu.edu


Jon's June 16 reply to Martha W's June 16, 2006 - Hi Martha, I don't want to rain on everyone's parade all the time but it's easy to forget that the FDA is riding the backlash from their approval of Vioxx and the deaths and injuries it caused years after it was approved. They're in a tough spot - many scream that they delay new drugs too long, while others scream that they risk our health by not testing new drugs well enough before approving them!
     Every person in America will be yelling at their doctor to give them Accomplia if it is approved because they all want to lose that 20 lbs. The FDA greatly (and rightly) fears that if there are serious long-term side effects, they won't be seen in trials but only after millions of Americans take the drug for years, as happened with Vioxx.
     The FDA is being cautious because that's what they should be on a drug of this sort in a country where the demand for it will not just come from seriously obese people. Everyone who wants to lose a few pounds without a lot of effort will demand this drug, and we all know it. If a person stops taking it, will they gain the weight back? If so, it could be a drug for life. That would multiply the risk.
     Once a drug is approved, it's out there and can be prescribed to anyone for any reason, not just the original target population. Drugs are risky business. Personally, the fewer I take, the happier I am. I'd love to get off some of the ones I take now, believe me. I have so much pain in my hips and lower back that I can walk about 6 minutes (less on hard surfaces) at a very slow pace before I have to sit or lie down. That makes weight control murder. Yet, I am working on it through diet simply because I don't want any more pills. Jon.


Mary C, June 16, 2006 - Hi all, Okay, this board has given me more courage. I called the third cardiologist's office and talked to the cardiologist's nurse when she finally she returned my call. Anyway, I can be pretty persistent when I have a lot of back up - that is you guys. I told her I feel awful, that I am full of fluid and I have a cough. It doesn't feel like asthma. What is going on with me? What is my diagnosis? That really threw her. She said she had made me an appointment to see the doctor this coming Monday.
     So I asked how I would know when to go to ER. I feel awful, I am in a chair taking diuretics and nitro. She never answered that one. Then I asked her about the fact my first cardiologist said I was in heart failure. What stage and class? She said that was not written down in my records. So I said (since I read The Manual, I knew to ask this question), "Is there a blood test for heart failure?" She said yes. I finished with, "May I have the blood test before I go to the appointment on Monday so he can go over them with me?" This way I knew I could save money, those second co-payments are murder.
     We ended up with her ordering me all kinds of bloodwork, I am going in at 7:30 AM Friday to get them. I then asked if it is time for another echo since I haven't had one in 7 months. She said she can't order that but she will ask the doctor. A little control is good, and I did it in a really nice, knowledgable way, thanks to this board and web site.
     Oh, by the way, I need to bring this point up: I believe Coreg is a good medicine so please don't stop taking yours because of my experience. I really believe it was the way they switched me and not the drug itself that gave me problems. I think my brain is getting more oxygen today. I am thinking better and clearer. Thanks Jon, for making sense out of my ramblings. MHCarrs@aol.com


Ruthie A's June 16 reply to Mary C's June 14, 2006 - Hi Mary, Don't be surprised that your doctors don't have a clue about diastolic dysfunction. Most don't. I have fired so many cardiologists who are supposed to be so knowledgable about CHF because they either say I don't have it or they try to treat me as if I had systolic dysfunction. In either case, I'm the one left holding the bag.
     So be patient. You may have to go through several doctors before you find one who is willing to work with you and educate himself with the little amount of information available. After 3 years of not having a CHF specialist for the above reasons, I just found the "man of my dreams!" He is smart, but acknowledges that no one knows much about DHF. He often admits that he doesn't have a clue, but he is willing to learn - and he answers my questions as best as he can. He really listens. Imagine that! <lol>
     Regarding EF, your numbers are right on. We DHFers don't get low EFs even though we may feel as rotten as those who do. That's because the causes of our heart failure are different. Generally speaking, with systolic heart failure, it's a pumping problem. With us who have DHF, it's a filling problem. The results are mostly the same, just from different causes. That's why medication needs are a bit different than other CHFers. When you are super-sensitive or allergic to the meds you need, you become a complex case that will overwhelm most cardiologists who are, as Jon said, overworked, have overinflated egos and are way behind the information curve.
     So keep reading, keep posting, keep questioning. No one is going to care more about your well-being than you. Give yourself some time. There's a lot involved in the heart failure balancing act and it takes awhile to learn how to do it. Once you feel like you have a handle on things, your body will throw you a curve ball to keep you on your toes. I speak from experience. :-)
     E-mail me if you want to vent. I am already there and am still doing that. rlaba51@yahoo.com


Donna V, June 16, 2006 - Hi Jon, Thanks, but what's the difference between a supplement and a medical food? It's a pill but it's not an FDA-approved drug? There are too many nuances in these things. I figure if I take Limbrel for awhile and give it a chance, then stop it a week and see if any difference or not, it might be doing something useful? My pharmacist friend has not yet shot it down so maybe that's a good sign? Keep sending info. Thanks. Donna V. dmvditty@aol.com


Jon's June 16 reply to Donna V's June 16, 2006 - Hi Donna, Medical foods are manufactured in line with FDA standards. They can only be given by a doctor, prescription. Some are liquid, some are actually foods to be eaten, some are meant to be taken only by IV, others are in pill form. All are meant for people with very specific nutrititional needs because of a medical condition or disease. However, they are not drugs. Don't stop taking yours unless you clear it with your doctor first! They can be very helpful in managing serious chronic health problems. They're just not drugs is all.
     Supplements are not FDA-approved, regulated, or manufactured in FDA approved plants. They do not require a prescription. Those are the differences. Now, I don't have a lot of info on medical foods so if any of this is wrong, someone please correct me. Jon.


Mary C's June 17 reply to Ruthia A's June 16, 2006 - Thanks Ruthie, I will e-mail you. I went to the lab today. My husband and I prayed before I went in for a really good phlibotomist. They always tell me, quot;You have small, deep veins." I only give them two chances, then I ask for another one. I have a lot of scared veins because of so much blood work since last May of 2005. So Cindy, who drew me, was really good. I made sure to tell her no vacutainer, my veins collapse, and I asked her to use a butterfly. It feels good to have a little control in your care. Knowledge is empowering.
     Now Monday, I plan to encourage the cardiologist I see to be my partner in care, not my dad, which he enjoys doing. I have to keep seeing him until I can get someone better. He has a great nurse and I don't want to give her up. She has saved my money and time more than once. She never treats me like a number. So it is going to be hard leaving this office because of her. She is a RN, with extra training in cardiology, and spends a lot of time with me in the office. She never does an exam, the cardiologist doesn't believe in Physician Assistants doing them. She just works me up for him.
     Their office is located in the hospital so when I do go to the emergency room there, it is easier for them to get my records from him, and vica versa. So I am hoping I can break this doctor in. They are connected with the UCSF heart failure clinic. I am still praying about leaving my third cardiologist. MHCarrs@aol.com.


Debra S, June 17, 2006 - Hi all, I am looking for a good cardiologist, a heart failure doctor in Michigan, in the Oakland county area. I would prefer a Beaumont doctor or Henry Ford. I sure hope someone can recommend one. I am desperate. Debra. r_steinberg@sbcglobal.net


Donna V's June 17 reply to Jon's June 16, 2006 - Hi Jon, You have such a wealth of information. Thank you! I feel better having that information about the medical foods. We'll see what happens with my knees. Donna V. dmvditty@aol.com


Donna V, June 17, 2006 - Hello, For those of us who have met and known Mary Ann Meredith through this site this is a sad day. Her husband called to say she died this morning. I am still crying as she became a very close friend whom I met through this site a couple of years ago and we wrote daily and talked on the phone a lot. She could always make me laugh and she had such good sense. It was not her 6 years of dealing with CHF or other health problems that took her but an undetected split ascending aorta and her heart could not handle the emergency repair surgery.
     If anyone wants to contact her husband and daughters with condolences I have his mailing address and will send. I don't have a clue as to how many people she touched through this site. She loved her gardens so perhaps we should all plant something in her memory. Through tears, Donna V. dmvditty@aol. com


Tony T, June 17, 2006 - Hi to all, Your conversations about CCBs, especially verapamil, caught my attention. I've had CHF for about 20 years now, and have taken CCBs most of that time, especially verapamil, which, for me is a very effective medicine. It makes me feel better and is one of the few meds that effectively lowered my chronically high blood pressure. I also take quinapril, an ACE inhibitor, warfarin and digoxin, and am on a frequent feeding-small meal diet which has been very effective for me and which has allowed me to reduce my heart medicines and also to reduce my verapamil dosage.
     However, learning how to safely use verapamil has been difficult and has taken a long time. For example, about 6 years ago I posted notes here asking if others suffered from a harsh, fast, heart "thumping" that would last for many hours. In fact, I searched all over the Internet to find out why my heart would go into a fast, very hard beating, especially at night and would sometimes thump for days along with an increase in chest pain.
     I could not find an answer. No one else complained about it. I finally linked the harsh thumping to verapamil. I found out that I could not take verapamil within 2-1/2 hours of digoxin. I also found out that I could not eat any food or drink containing a lot of calcium, like cheese or milk, within 2-1/2 hours of taking verapamil. I also found out that I could not take certain vitamin or mineral pills while I was on verapamil. I also could not take statins.
     I am now on a reduced amount of berapamil (80mg twice a day), so I don't know if I would experience the same problems on the lower dosage, but I am not willing to test it. I still suffer from an occasional bout of tachycardia, but at least that harsh thumping is gone. t0nyt@yahoo.com


Donna H's June 17 reply Mary C's June 14, 2006 - Hi Mary, Believe me, I know how hard it is to get a diagnosis! My husband has been told everything from "it's just indigestion" to "go home and enjoy your last 6 months" but we finally found a doctor that not only would talk to us but was also interested in making sure my husband got the right treatment.
     He was first diagnosed 6 years ago and his EF got down to around 8% a couple of years ago. After a new BiV pacer/ICD, he is no longer on oxygen and is out of a wheelchair. He feels pretty good but must pace himself because he now knows his limits. That kept him out of the hospital all last year other than just one time. He can't work but enjoys life and is on a heart transplant list.
     Now for something that might surprise you. You stated that you were going to get the blood test that would tell you if you have heart failure; I belive it is called a BNP test? I had never asked about my husband's BNP number so I asked the cardiology nurse at his last appointment. His number is 67. She said that according to that test, he doesn't have CHF and that his BNP number has always been low. Since his heart is greatly enlarged, his EF is now about 35% and he has other symptoms of heart failure, and the doctors consider him to be a class 4 heart patient. Numbers just don't tell the whole story. Instead it takes communication between the patient and the doctor to get a proper diagnosis. Good luck! chuckndonnah@msn.com
 
Jon's note: Numbers are important to know but you are absolutely right - they never tell the whole story - a point it never hurts to make again.


Mary C, June 17, 2006 - Hi all, I read somewhere in this site - I can't remember where - that it is a good idea to get your medical records. Well, I finally am getting mine. I just asked the doctors to give me a copy. I didn't have to pay and I just got a copy of the test, not ot the fluff - and I am glad I did.
     It turns out back in May of 2005 I was admitted to the hospital for a strange event. One morning I woke up with a sore throat and in 24 hours I was admitted with severe pneumonia and asthma. I had a great emergency room doctor who wouldn't send me home because my heart rate jumped to 140 beats a minute because of all the drugs used to open up my lungs.
     Well, I met, on the floor, a great hospitalist. He ran all kinds of tests on me. This hospitalist is also an emergency medicine, pulmonology, and sleep medicine doctor. He is very sharp and kind. Well, he wouldn't let me go home for 3 days. He wanted to keep me longer but the PPO said no, unless of medical necessity - a very important term to get them to pay. Because he saw something funny on my x-ray, a shadow that showed an enlarged heart. The echo showed I had pulmonary hypertension. Since I didn't have access to this site, I was uneducated on what to do next.
     I was on a kind of antibiotic and was sent home. My PCP, who had the report sit in his office for six months never told me what the report said and I thought my lungs felt better. That is the end of it. Now I have a very good PCP but he somehow overlooked what the echo said written by a cardiologist: "evaluate right ventricular pathologies." Doctors write notes to each other on the medical records we never see unless we have a copy. I didn't know what the pulmologist meant:"I want to rule out CHF, before you go home." I was feeling so lousy, I didn't ask. I thought CHF was a severe asthma symptom or term.
     Reading my medical records has shown me that it has very good information that we need to be aware of. I also notice that the echo was better in 5/2005 than the echo I had in 11/2005, only 6 months apart. This has never been followed up. Now I know with written evidence that I can ask with knowledge for a new echo. So Monday I am going in with my medical records and a list of questions, and pencil and paper to take notes, so I don't forget. I am taking my husband, so he can intimidate the cardiologist. Rick, is better easy going, until it comes to my health. He is my advocate.
     Thanks to this message board and web site I now know what to ask for, and how to ask it. My goal is to prevent further damage. In May of 2005 my diastolic parameters were normal. Now on the 11/09/2005 echo shows diastolic dysfunction, just six months later. I feel in my heart I need an echo results update. Now I never would have pushed for another echo if I didn't have these records as proof that your echo can change in six months.
     Good job, Jon. I think you have saved my life and quality of life. MHCarrs@aol.com


Bill H's June 18 reply to Miranda W's June 15, 2006 - Hi, Let me start by saying if I had a wife like that I would drink. Now, I'm starting my third year with CHF and there are a lot more who have been around a lot longer. No one knows for sure how long we are going to live, so his wife should shut up and not put dying foremost in his thoughts. At first we don't need any help thinking about it. As time goes by, thinking about living takes over. bj5250@yahoo.com


Linda K's June 18 reply to Deb's June 12, 2006 - Hi, I am also very interested in blood pressure numbers. I have always had low blood pressure, just like my mother. I never paid any attention to the actual numbers back when I always felt good but I can remember being in a doctor's office about 10 years ago and having a nurse ask, "Is your blood pressure always this low?" I have only started treatment in March, and they're still fine-tuning my meds, but I seem to be averaging about 85/65.
     However, last Thursday I had a BiV pacer/ICD installed. My husband tells me that in recovery my systolic blood pressure suddenly dropped to 52 and they couldn't get me to wake up. I have zero memory of all this. After a couple of days at home, I went back to the hospital and spent another 4-1/2 days getting rid of excess fluid and trying to stabilize my blood pressure. My systolic is still dropping into the 70s when I'm lying down but is now often going up into the 90s when I'm up, especially if I'm a little active.
     On a side note about fluid, I now know I can trust my gut. After a couple of months on my new heart-healthy diet, I was very surprised that I had not lost a single pound, but as I gradually had more and more symptoms, I began to wonder if my weight loss was being masked by fluid. A right heart cath proved my suspicions. I am only 3 pounds lighter than I was before I went in for treatment, but I can lie flat again! It doesn't do any good for them to listen to my lungs since I have never sounded crackly even when I was coughing blood! I never get swelling in my legs. All my fluid goes to my abdomen. lindakasunick@adelphia.net


Kim H, June 18, 2006 - Hi, I just found this web site. I have PostPartum Cardiomyopathy. I have an 8 week old son. I am 27 years old. My EF was 15% but is now 30% but I still can't take care of my child by myself. I am desperate to talk to someone else with this, to find out their experience.
     What herbs might help recovery with left ventricle enlargement due to strain from pitocin overdose during induced delivery? They did not check my dilation before spinal preparation and a pitocin IV; I was at 10 and it was too late for a spinal but they did not check first. My last contraction lasted over 20 minutes and my husband thinks this strained and swelled my heart up and my lungs filled with fluid within 36 hours but they released me anyway. Kim. khoward@menifee.k12.ky.us


Roger H's June 18 reply to Mary C's June 16, 2006 - Hi Mary, I totally agree about The Manual, the positive attitude and support, like you said. My cardiologist after my second bypass seemed to have no clue. He put me on Coreg and Cozaar, then said if you have any more heart problems give me a yell, you know where I am. Yes, he was set out at the curb! He gave me no information on CHF - he was clueless! rkharmony@highstream.net


Mary C's June 20 reply to Bill H's June 18, 2006 - Hi, When I was 10 years old I asked my dad, "Daddy, what happens when we die?" My grandfather had just died. My dad said that we get to go home. Somehow that has helped me so much throughout my life. Simple, isn't it? We get to go home. I am very much aware of the fact that I may go home before other people because of multiple health conditions. That makes life to me that much more precious.
     So until then I will fight for quality of life. Knowledge empowers. So I totally agree Bill, there are other things to think about. Death should not be our foremost thought. Life should be our foremost thought. That may mean getting away from people clutter. I just don't have the time or inclination to have negative people around me. MHCarrs@aol.com


Mary C's June 20 reply to Roger H's June 18, 2006 - Thanks Roger for the build up, I needed that before going to the cardiologist. Don't let the "white coats" get you down. Find yourself a good one, and keep fighting for your quality of life. MHCarrs@aol.com


Greg B, June 20, 2006 - Hi all, Chalk me up as another victim of CHF. This caught me by surprise as I've never needed hospitalization. I got it from a flu virus, not heart attack. I just read The Manual. Now I have a more precise idea of what CHF is. Ironically, I was compiling the latest stem cell technologies when I got hit with this nightmare. Ironically, the hospital I ended up in, the Cha Hollywood Presbyterian Hospital is owned by a Dr. Cha, who is trying to bring in mainstream stem cell treatments. The staff there is wonderful. Luckily I work in the news media and am able to get word out to the press about such issues.
     I for one will not let this condition get the best of me. I will see miraculous and cost effective treatments/cures for CHF and many other illnesses. Our number one job is tending to one another. The doctors and nurses have enough of a rough time as it is. We all need to help. Sure, some wiseacres will say people with cardiac problems brought it on themselves. Sure there are preventative things but sometimes it was something viral like the flu. I'm fortunate that if I just follow a nutritional regimine and exercise I'll make a comeback. Others aren't so fortunate.
     I'm glad I found this website. It's truly a godsend and I'll be donating as heavily as I can. There are brighter days ahead. We have to stand up and let our politicians know we won't tolerate stonewalling when it comes to effective treatment. We have to support our medical professionals as much as we can even if it means volunteering time at the hospitals.
     I want to see each and every one of you and your loved ones up and ready and fit which is our right in this world. If stem cell treatment is the key, then so be it. I just wrote the Vice President Dick Cheney regarding this matter. I'm sure he'll see the light of day on the issue. I've also read the controversies. Bottom line is the treatments work. They're often obtained in foreign countries and insurance doesn't cover it. We need to fight it. I want to see all of you and your families within one year on the outside healed. Believe you me, you'll never hear the end of me on this issue. evolbaby@aol.com
 
Jon's note: You have me confused. Adult stem cells of one type or another are used in all the cardiac stem cell therapies I've seen, not embryonic cells. So I see no controversy. In fact, it's almost always your own cells that are used. For what it's worth, if you're in the media and love the site, why not spread the word of our usefulness far and wide so others will see the need to donate as well, especially companies and doctors? We're a 501(3)c just like the American Heart Association. Thanks.


Mary C's June 20 reply to Linda K's June 18, 2006 - Hi Linda, I am one of the lucky few who gets fluid in my face, neck, abdomen, legs and feet. I just went through a very wet 2 weeks. I am still recovering. I ate Chinese take out. I found out that is a bad idea after hiking up trails. I learned the best thing to do every day is to weigh myself on a good scale as soon as I get out of bed and keep a log of my weight, blood pressure, and pulse. I also keep a written log of symptoms to show the doctors. I know it is not normal weight gain because I am just not eating that much. I feel like I have no appetite and no room for food.
     So the culprit is that I am sodium sensitive. Mind you, I have only learned this in the past week while reading the edema section in the FAQ. I was able to stay out of the hospital, which is good because I owe everybody! I played it smart and was in phone contact with the cardiologist's nurse about self care during my "wet" season. By the way, I lost 10 pounds of fluid in 7 days. I kept track of it every day to make sure it was going down.
     Now that I can think better, I know I should have gone in for IV diuretics but I read that section just recently. Also, I was afraid the emergency room people would make my heart damage worst with the wrong treatment. I have now learned their is a special section of my hospital that has an up-to-date cardiac care facility but that is no guarantee that I would have received the right care.
     Jon, I hope you get The Manual turned into a book so I can carry it to the hospital with me. Binder style for the updates I am sure you will do along the way. MHCarrs@aol.com


Jon's June 20 reply to Mary C's June 20, 2006 - Hi Mary, The feeling of not having any room for food can come from fluid being retained by the liver and stomach lining. Be sure your cardiologist checks for these. Eating any kind of take out food is a bad idea no matter whether you've been hiking or not - it's loaded with sodium. As for writing books, everybody tells me to write one, and to write a cookbook too. I just can't do that and still run this web site. Make good use of your printer is all I can say. Jon.


Jackie G, June 20, 2006 - Hi everyone, I have been reading everything I can find about CHF. I made a post last week regarding my mother-in-law and her condition, which seems to be getting worse. My husband is at the emergency room with her as I type this because they called from the assisted living facility and said she couldn't breathe and they were sending her to the hospital via ambulance. It is less than a week since the last time they had to use a tube to remove the fluid and before that it was just two weeks apart between the last two incidents.
     We love her very much and she is on Lasix at 80mg daily, and Coreg. She has two other children who have not seen her in over a year and my heart is telling me that I should call them tonight and tell them to come now but the doctors will give us no time table on her prognosis. She has a lot of other health problems besides the CHF. She has uncontrolled diabetes and takes insulin 3 times daily and she is obese and has debilitating osteoarthritis.
     My dad also has CHF but just had a pacemaker and an ICD put in a couple of months ago and he has had no more episodes. He is very active and doing great. My mom-in-law is always tired and has to have help even with small tasks. She is only 74 but her body is probably about 94.
     I was just hoping some one out there with experience could give me any insight about her prognosis from situations you have gone through. I don't want anything to happen to her and her children did not get to see her but I don't want to call and tell them to come and she may be better next week. Thank you for any help you can give. A concerned daughter. jackie771@aol.com


Ann L's June 20 reply to Kim's June 18, 2006 - Hello Kim, Your note touched me. What a bad experience. I do want you to be able to make contact with other postpartum cardiomyopathy patients. There aren't a great number but they do exist. What's your little boy's name? Who is helping you?
     As for the cardiomyopathy, I don't think it can be reversed but here's hoping you can much improve it and have a reasonable amount of energy return. When I was first diagonosed following chemo (yes, it was one of the chemo drugs that was the culprit) I was pretty wasted, very short of breath and sort of moving from the bed to the couch and back. I started with a do-it-yourself plan and increased my exercise each day trying to walk a little farther, etc.
     It was not too long before I had a cardiologist and a plan. Basically, it is daily exercise, a 2000 mg sodium daily diet, Coreg, and an ACE inhibitor with lots of monitoring to tweak things. I have come to live a near-normal life but I do not have a little boy to care for and run after, as you will someday have to do. I know of no herbs to help.
     Oh and let me add, getting used to the idea was no walk in the park. It took me 3 months walking through the "valley of the shadow" to get back to my normal sunshine. annlau@davtv.com


Michele F's June 20 reply to Kim's June 18, 2006 - Hi Kim, I'm so sorry to hear your story, but it sounds like you might have a lawsuit on your hands. I would document everything now, while it's fresh in your head. Of course, you're busy with a new baby but try to do it. Learn everything you can about your condition and go see a specialist. Good luck. mmfoy@comcast.net


Mary C, June 20, 2006 - Hi all, Does anyone have any experience or information on William Grossman, MD. He is at the University of California at San Francisco. He is their DHF specialist. I just want to know if anyone knows him or has any of his articles around. I will do a Google Scholar search as well. MHCarrs@aol.com


Martha W, June 20, 2006 - Hi, This may have been discussed here before I found the forum, but it's worth repeating. Most of y'all have been on your particular medicines long enough that you automatically know what your monthly bill is going to be. Still, ask your doctor if he has any samples. Any drug that has been out long enough to have a generic copy may not offer samples, but the drug manufacturers want to make certain their drugs are foremost in the doctor's mind when he writes prescriptions, so they frequently hand out samples. I have never paid for Cozaar and I've been on it for several years. It certainly doesn't hurt to ask for samples, you might be saving yourself one prescription cost per month. Martha. mwells@ppfs4.tamu.edu


Doug H, June 20, 2006 - Hi, I have been feeling tired lately and am back to napping and yet waking up different hours of the night. My blood pressure is fluctuating from 120/62 to 100/59 and I am having inconsistent episodes of lightheadedness. It's been almost a year since my initial episode, I have a biventricular pacer/ICD, am on amiodarone, Lopressor and metoprolol.
     Tell me this is just another one of those, once you have it you will have times like this, or should I go ahead and call my EP doc. I am working part-time and carrying a full load in postbaccalaureate - maybe too much stuff going on. Thanks. deh3271958@hotmail.com


Kris P, June 20, 2006 - Hello, Has anyone been zapped by their ICD? I am just curious, my father was zapped four times today. The doctor at the hospital said he was zapped because of an electrolyte imbalance. Dad was in the middle of a colonoscopy prep. Has anyone heard of this happening? How scary. Thanks, Kris. kpstyling@comcast.net


Bill H, June 20, 2006 - Hi, I would like to hear from someone who has had gastric bypass done. I've read everything I can find on the subject, but would like to hear about actual experiences. I've tried about everything I can to lose weight, but I just cannot seem to do enough at one time without crashing. Thanks. bj5250@yahoo.com


Jon, June 22, 2006 - Hi everyone, Well, by the time I got home yesterday I was tired enough to just call it a day. The dermatologist called well after hours Tuesday night and said he wanted to see me before his usual patient routine started so I was there when the office opened. This nasty rash - and it is nasty - turned out to be 2 different rashes when biopsied and cultured. One is caused by my immune system attacking my middle layer of skin, the other is just your "typical" rash, so to speak. So I had to go straight to the hospital for blood work, then to the pharmacy for a prescription. By then I was halfway to the stereo shop so I stopped by to see about another stereo component. Wore me out.
     I'm tired of pills, creams, gels, inhalers, specialists, tests, and being sick with way too many chronic health conditions. Just venting is all. Jon.


Martha W's June 22 reply to Greg B's June 20, 2006 - Hi Greg, There are a number on this forum who were told their CHF had been caused by a virus that settled in their heart - myself, for one. I got on the medications and started a walking program and in 8 months was in worse condition than before. I had a pacemaker put in and while I'm better, I'll never be completely well. If your doctor tells you that it's curable, you might want to get a second opinion. Yes, there are some people who actually do get better, if not well, but for the majority of us, we're in it for life.
     The heart is an amazing organ, look at the abuse it can withstand before it staggers to a stop! It even has the ability to heal itself in some cases but I don't know how any medical professional would know who is going to get totally well and who is going to have CHF for life. Martha. mwells@ppfs4.tamu.edu


Doug H, June 22, 2006 - Hi, I called my EP doc and they have reduced my lisinopril and will monitor me for the next week. Also, has anyone read the recent study that concludes that if diastole is under 70, the heart may not be receiving enough blood and that mortality rates and or the risk of stroke and other complications may increase 2-fold in those with some kind of heart condition. deh3271958@hotmail.com
 
Jon's note: Post-diagnosis, my CHF doc wanted my diastolic pressure to be no higher than 70 and we worked to keep it low. My EF has gone up 41% in those 12 years and I'm still kicking with no strokes or heart attacks or whatever. Can you e-mail me the actual abstract or a link to it? Thanks.


Mary C's June 22 reply to Jon's June 20, 2006 - Hi Jon, I finally understand. I found it in Who Should Do What Exercises?. I agree about take out food, it stinks. No take out is worth 2 weeks of my life. I have found some good low-sodium cook books over the months of illness and I am finally using them more. I got myself a sodium counter. I had no idea! Did you guys know there is even sodium in tap water? I am finding I am doing better around 500mg of sodium. I have enjoyed your kitchen setup area with the great pictures. I am just so tired right now. So I think when I feel better I will implant more of your ideas around here. Also, I sat my family down, husband and kids. I showed them The Manual and said we all have to follow it so that you will not develop heart disease and so mine will not progress. They had no problem with it because the recipes really taste good. They all want me to hang around longer too! MHCarrs@aol.com
 
Jon's note: I have a ton more cooking photos ready but the pages to go with them aren't done yet.


Karen K, June 22, 2006 - Hi, I have a question regarding Social Security Disability. I currently receive monthly disability payments. I will be 65 in October of 2007. According to what I found on the SSA web site my disability benefits will convert to Social Security benefits when I turn 65.
     I had two people tell me the other day that my benefits will decrease. I don't think this is the case. If someone here knows for sure, I would appreciate knowing as I'm planning for my future. I've cut my work hours from 20 hours a week to 15 and told the church I work for, that perhaps they would need to know for budget purposes I fully intend to not be working by the end of May, 2007. I was going to say the end of this year but decided I could tough out the first 3 to 4 months of 2007 since they are really busy ones at the church. Karen K. karenk@machlink.com


David W's June 22 reply to Bill H's June 20, 2006 - Hi Bill, I had laparoscopic gastric bypass surgery on October 1, 2003. My cardiologist was against me having gastric bypass surgery because he thought my heart was too weak and that I would die on the operating table. I gambled and had surgery anyway and it was the best decision I ever made. My high weight was 350lbs at CHF diagnosis in August of 2000. I was down to 308 when I had surgery. I got down to 199 then gained up to 225 and I had an appointment today with my gastric bypass surgeon and I weighed 211. I am pleased and losing the weight has really helped my crummy heart. I had gastric bypass surgery so I could lose enough weight to qualify for a heart transplant. I do now qualify but I don't think I need a transplant now since I am better.
     I had a dual chamber pacemaker put in two weeks ago and I am getting even better yet. I had almost given up hope of getting better but I am so much better now. I am working, active, and happy. Gastric bypass and the pacemaker have worked wonders for me. A good web site to do research on gastric bypass surgery is www.obesity-help.com.
     Gastric bypass is not risk free and it is not easy by any means. You must be willing to make lots of changes permanently. There are some foods you may not be able to eat again and you will not to be to eat large portions at all anymore. Your taste buds change too. Who knew broccoli and brussel sprouts could taste better than sugary stuff? I used to be a sweet addict, now sweets don't appeal to me that much.
     You can have complications that are difficult though. Last April I had a bleeding ulcer from gastric bypass and this year my gall bladder died inside me, maybe from gastric bypass, maybe not, who knows. I would have surgery all over again anyway. Never before in my life have I kept a significant amount of weight off for two and a half years. All my fat clothes are gone. I wear a large shirt and size 38 pants. I don't go to the Big Man's Store anymore because those clothes are just way too big for me. I love to go clothes shopping now that I can wear nice cool clothes and don't look like a beached whale. I am not embarrassed to go swimming. I don't look bad for a 55 year old man.
     I don't know anyone who has had gastric bypass who regrets having the surgery, although you can have complications and problems, and there are no iron-clad guarantees. I just think not lugging arond all the extra weight just makes it easier on our tired hearts. They don't have to work so hard anymore if you are thinner. wilsond537@aol.com


Bridget K, June 22, 2006 - Hi, My stepfather has just been diagnosed with congestive heart failure. He is only 59, but has carried around too much extra weight for the last 15 years. He has been in the hospital for 4 days so far (they just made this diagnosis today). He is not sleeping well at night. He has lots of things hooked up to him. He's somewhat out of it. He seems lucid one minute and then his speech sort of slurs or trails off. He has some difficulty breathing and coughs more when he is lying down. He is generally achy, and sort of miserable.
     My question is, what can I do to make him more comfortable now, while in the hospital, and then when he goes home? Are there any people out there with CHF who remember how they felt when diagnosed in the hospital and what if anything made them feel better or more comfortable? Thank you! bridgetkraftward@hotmail.com
 
Jon's note: Personally, just getting home, getting care from a heart failure specialist, and learning enough about CHF to take some control back really helped me.


Blanche A, June 22, 2006 - Hi, I am on Coreg, Diovan, spironolactone, Lasix, Digitex, potassium, Coumadin and have a biventricular pacemaker as of last July. I am plagued by muscle cramps and spasms, although my "lytes" test in normal range. These cramps are severe enough to awaken me from a deep sleep at night. I also take Vytorin. My doctor dismisses this complaint, but it hurts. Do you have any ideas what may be behind this? I would deeply apreciate help. bna104@msn.com
 
Jon's note: First, kick your doctor in the shins for being a dufus. Any pain that awakens you is considered moderate to severe and requiring treatment - this is standard of medical care. This could be from a drug or from a drug-drug interaction, or could be from serious deconditioning. Find a doctor as soon as possible who will find the reason.


Mary C's June 22 reply to Ruthie A's June 16, 2006 - Hi Ruthie, I have not been able to be diagnosed here in Fresno so I e-mailed Dr. Grossman at UCSF. He actually e-mailed me back in less than 24 hours. He is referring me to one of his specialists whose special interest is in DHF and pulmonary hypertension. I just said, "Can you help me?" My echo showed the top results. Keep saying those prayers. I am praying for you and Jon also. Take care. MHCARRS@AOL.COM


Robert B, June 22, 2006 - Hi, Is it my imagination or are my problems of shortness of breath and mucus sputum buildup in my bronchial, compounded when I am in a climate with high humidity? Would a dry climate such as the Arizona desert with low humidity be advised? azrebox@yahoo.com


Barbara K, June 22, 2006 - Hi all, I thank God for this web site - it tells it like it is. My husband was diagnosed with CHF about 4 years ago. It is hard to watch one's spouse go through this. He not only has this but he has the beginnings of COPD and asbestiosis, and coughs all the time. I would like a friend to talk to. That would be a blessing. Thank you, Barb. bjkirbe@netzero.net


Audrey R, June 22, 2006 - Hi, I am relatively new to this CHF site but I figured if anyone could answer this it would be y'all. I have been on thyroid meds for hypothyroidism for 9 years and recently I have put on about 30 lbs in the last 3 months. I barely eat and I can't quite figure this out. I just recently began weighing myself daily to nip any water gain before it gets out of hand. I take 200micrograms of levoxyl, which is fairly strong and I also take Toprol-XL at 100mg and lisinopril at 10mg and Lasix at 20mg daily.
     I asked my doc if perhaps my levoxyl should be increased. After my last appointment I discovered information leading me to believe that with synthetic hormones, at times the T4 can't be converted to T3 and in that case you need to take animal-derived thyroid meds to do the conversion; otherwise your body cannot use the available thyroxine. The endocrine system is so involved and complicated; I have several medical text books on thyroid and it's very confusing.
     My doc says he has to be careful with the thyroid meds as too much could kill me. I understand that, but with my cholesterol elevated as well, this could not be a good thing! Does anyone have the correct information whether my beta-blocker could be interfering with my thyroid med absorption. Sorry - I re-read this post and it's a bit scattered as to the question. Help, anyone? audrealayna@yahoo.com


Marie J, June 22, 2006 - Hello, I have been lurking for awhile and this is a first post. My husband was diagnosed with cardiomyopathy, hardening of the arteries, LBBB and hypertension 2 years ago. Five weeks ago he had his first bout of heart failure requiring hospitalization (5 days). Two weeks later he received an ICD. Since then he has been depressed and extremely grouchy. I can't seem to get him out of this and his PCP will not prescribe anything for this because of his heart rate. I guess I'm asking: Is depression going to pass or do I need to seek another PCP? Do most people suffer from this behind all these procedures? My husband is now 52 years old and I think he is be struggling with what kind of future he might have. Your site is a God send. Thank you. Marie. mopar11@bellsouth.net


Jon's June 22 reply to Barbara K's June 22, 2006 - Hi Barb, Your e-mail address is bouncing so my reply to your e-mail has not made it to you as far as I can tell. If you send me another e-mail address to form@chfpatients.com, I'll get it and re-send to ya. Jon.


Linda K's June 22 reply to Bridget K's June 22, 2006 - Hi, I gotta go with Jon on this one. Nothing makes me feel lousier than being in the hospital. Crummy bed, crummy food, crummy clothes, tubes sticking out, needles sticking in, no control. Lying around is definitely not the way for me to feel better.
     Also, don't discount the lift from taking responsibility for your own health as much as possible. It ain't a cure, but there is so much feeling of helplessness with this disease. I oughta know, I've been through breast cancer and this is worse. At least with cancer, I had an enemy to fight. lindakasunick@adelphia.net


Linda K's June 22 reply to Blanche A's June 22, 2006 - Hi, At the Cleveland Clinic, they treat pain as one of your vital signs. I am constantly being asked to rate my pain. After my hospitalization in March, I got a follow-up call which asked, among questions about the nursing staff and doctors, whether my pain was monitored and eased in a timely fashion. There is no way you can feel better if you've got pain disrupting your sleep. If they doubt you, remind them that sleep deprivation is a standard tool of torture. lindakasunick@adelphia.net


Martha W's June 22 reply to Marie J's June 22, 2006 - Hi Marie, A friend was just diagnosed with a weak heart and pulmonary disorders. The doctor didn't use the term "CHF" but it seems to apply. She was put on lisinopril and Coreg at low dose. She said the medicines haven't changed her blood pressure and have made her extremely depressed. I was commenting to my husband that I guess they react differently to different people because I certainly never was depressed. He told me I was extremely depressed when I first found out. I feel like I was so relieved at having a direction to go, a disease I could work with, I didn't have any depression.
     So, let your husband absorb all the new information and adapt at his own rate. His future is literally in his own hands. If he wants to maintain a good life style, he'll have to adjust his habits and monitor himself closer to see what works and what doesn't. A new drug, like one for depression, could mask important symptoms right now, so his cardiologist is right in holding off on another prescription. Just my 2 cents. Martha. mwells@ppfs4.tamu.edu
 
Jon's note: If he is truly depressed, remember that a beta-blocker can seriously worsen depression.


Ben B's June 22 reply to Marie J's June 22, 2006 - Hi Marie, Don't take this the wrong way, but with all that has happened to him in the last 5 weeks I think your husband has a right to be a little depressed and grumpy for awhile. I would be and I think most people would, given his circumstances; provided he isn't violent or anything. Why not give him a chance to come around before looking for a wonder cure? Just my 2¢. bdbrinkman@juno.com


Sharmesa W, June 22, 2006 - Hi all, I've been a lurker for some time and decided to tell my story. I'm 37 and was diagnosed November of 2004 with cardiomyopathy. It was really a shock because a couple of weeks before I ran a 1/4 mile race and biked 6 miles both as a competitor. What brought me to see a cardiologist was SVT that lasted about 8 hours.
     Then, my EF was about 20 to 25% and my doc was surprised that I managed to do what I did in that condition. Even before meds, my doc said I was well compensated, but needed to work out less severely. Over the months I kept having multiple SVTs and my doc and EP suggested I have a heart ablation done and ICD implanted. My EF wasn't getting any better so I agreed. In June of 2005 I had both procedures done at the same time and within weeks my EF went up to 35 to 40%. I have no clue what my EF is now but I will have my doc do another echo this year.
     My doc says I'm about a class 1-1/2. I hardly have any symptoms except palpitations, which kind of get on my nerves. He tells me there is nothing that can be done without damaging my heart even more. Right now I'm taking Coreg at 25mg twice a day, Altace at 5mg twice a day and Inspra at 50mg daily (even though I never had a heart attack). I believe those are at target dose.
     I'm wandering is there anything else you suggest I do. Thank you for listening to me. It means a lot (as you all know already). sharmesa.williams@cook-inc.com


Eugenia R, June 23, 2006 - Hello, I hope this message finds everyone in good spirits and feeling well. I just happened upon this site and am so very happy to be able to reach out to those who can understand first hand my condition. I was diagnosed 2 years ago with CHF with the birth of my twins. Before the pregnancy I was healthy and active. I was hospitalized for the last 3 months of my pregnancy. The doctors didn't know I was in heart failure. They kept telling me it was preterm labor contractions and put me on bed rest.
     I knew something was seriously wrong with me because I could not walk and had trouble breathing. Finally one night they had to deliver the babies 6 weeks early and I nearly died, ending up on a ventilator for a week. My ejection fraction was less than 20% and my heart size was 6.6cm. I am grateful to be alive today and so very thankful that I am getting somewhat stronger.
     I am now experiencing abdominal swelling! I am 5' 6" and 115 pounds. I wake up in the morning with a flat stomach but within an hour it starts to swell even if I don't eat or drink anything. By the end of the day I look 5 months pregnant. This wouldn't even be so bad as I can wear big shirts to hide it but it is painful; the pressure makes it difficult to walk at times. I then lie down and it will go away slightly but soon returns.
     I strictly follow a low sodium diet and limit fluids and I exercise (I walk 1-1/2 miles a day). I have had abdominal tests (CT scans and MRI) and nothing was found. It's a painful mystery and very discouraging.
     I've taken a few different diuretics and some have helped a little with the swelling but I feel so lousy on them (makes me tired,weak, spacy) so I can't take them. My lungs are clear and I have no shortness of breath. My ejection fraction is supposedly high enough so it is not the cause of this problem. Does anyone else have this problem? Any comments or help would be so greatly appreciated. Thank you for your time. Eugenia. Littlecarmie@optonline.net
 
Jon's note: What is your EF? Do you take any standard HF meds?


Wayne R, June 23, 2006 - Hi Jon and All, The question about being cured seems to me to be a moot point. Being truly cured occurs so seldom that we are all better off by being simply reconciled to the fact that we have an incurable but possibly manageable affliction. If we follow The Manual many of us will add meaningful years to our lives.
     While I recognize that each of is different regarding the origin and severity of CHF, I can only offer that a consistent and rigourous exercise regimen has brought me back from the brink. Prayer certainly adds more.
     On a different note, Coreg was from the beginning a difficult drug for me. It left me debilitated in many ways. After insisting that the Coreg was making me feel terrible, my current cardiologist spoke with a PhD pharmacist who represents Coreg, and was told that the latest information shows that Coreg has adequate impact at a lower dose than originally thought necessary. For me, that was 25mg twice per day. I have cut back over six months to 12.5 mg twice per day, and not only do I feel better, but my left ventricle went from 58mm to 53mm, and my EF improved from 45% to 53%. At my diagnosis in 2002 it was 26%. So maybe we bounce around, or maybe we have to keep trying to find out what works best for each of us. My experience has to be seen as only anectotal.
     Jon has constantly implored that we take control and question everything. He is without doubt correct. No one knows or understands your physical condition better than you, so make your doctor understand that as well. Tomorrow, I'll be fly fishing in a spot so remote and beautiful that only the Lord could have created it. I promise to pause and say a prayer for all of those who visit this incredible site.
     And last, Jon, please feel free to vent anytime. It only shows that you are normal. There is only one who was more. Wayne. whreos@bresnan.net
 
Jon's note: Maybe you could mention to my wife that I am normal - she seems to have a few doubts on that one.  <g>


Marie J, June 23, 2006 - Good morning everyone, I just reread my post and your responses. You are correct and I am stressing. My husband sure doesn't need any more meds! Thank you for getting me back on track. Marie. mopar11@bellsouth.net


Mary C's June 23 reply to Sharmesa W's June 22, 2006 - Hi, I started to get PVCs after a hot tub injury. I didn't know hot water could hurt your heart rhythm. PVCs are the pits. My doctors say don't worry, they won't kill you, learn to live with them.
     Get another opinion before you settle for "it might damage your heart more." I myself am going to see my fourth cardiologist in 7 months, per my primary care doctor and I am going to a major hospital for better treatment and diagnosis.
     I feel lousy and it is worth not settling, for fear of a worse heart problem in the long run. Read The Manual and do your research. Ask a lot of questions. Look up the site index here. I found more stuff this way. I didn't know there was so much help here.
     I gave up caffeine, eating take out, and sodium to feel better. You can do it. Read the stuff Jon has put in hyperlinks. His hard work has helped me a lot. Also go to the Me Too! section and get an e-mail buddy. It will make you feel better to know someone else has walked the same road and came out on top through aggressive self care. MHCarrs@aol.com


Mary C's June 25 reply to Robert B's June 22, 2006 - Hi, My friend left Fresno because the air was killing him. He has many health problems, both heart and lung. He moved to Tucson, Arizona. He says he is breathing much better but he lost his insurance in the move. I also have COPD. I cannot move to Arizona because of PH, the elevation of Arizona is between 3500 and 5000 feet. I can't breathe or move above 2500 feet.
     So even if the air is better you must look at other factors that may plague you by moving, like finding a new doctor, hospital, supportive friends, ect. Humidity really makes me wheeze, cough and develop horrible thick lung stuff. I have found that a change of diet, exercise and the right meds at the right time have helped. Running the air conditioner day and night helps me a lot. The removes a lot of the humidity while a water cooler makes humidity worse. You will find there is no real cure, just trade offs. MHCarrs@aol.com


Bill H's June 25 reply to Robert B's June 22, 2006 - Hi Robert, It's my opinon thats it is not your imagination. I can't breathe when the humidity is high. I stopped going outside when it gets like that. I need the air moving and cool to be comfortable. bj5250@yahoo.com


Mary C, June 25, 2006 - Hi Jon, In the tomato seeding and peeling section, when the tomato is now cooked, seeded and peeled - the end product in the last picture. Can we put those in the freezer for use as needed? Do you know if they will hold up after freezing for making homemade spagetti/pizza sauce? I usually cook a big batch of food on good days, to hold me over on the resting days or for after I have been released from Club Med days. I am still the chief cook and bottle washer around here. So anything to help me out on my good days is welcomed. MHCarrs@aol.com
 
Jon's note: A good question but I honestly don't know how well they handle freezing. Anybody?


Cheryl C, June 25, 2006 - Hi Everybody, In doing more research for our first Heart Failure Support Group meeting out here in sunny California, I came across another useful web site for us. I've been busy begging donations from some of my favorite low-sodium sources and found many recipes on the Mrs Dash web site at www.mrsdash.com.
     All their spices plus 4 marinades are low sodium. There's an online store, but I've also found them in my local Albertson's store. I think the marinades are pretty new. I've bought all 4 and haven't tried them yet, but they sound really good. The recipes are very easy. They are all marked with sodium, potassium, and fat level, so if you have any restrictions other than sodium, the information is there at your fingertips. Cheryl C. cocojo86@yahoo.com


Betty L's June 26 reply to Mary C's June 25, 2006 - Hi Mary, I think you would be more pleased with the results of your frozen tomatoes if you went ahead and cooked the sauce prior to freezing. bjlee123@aol.com


Jack D's June 26 reply to Mary C's June 25, 2006 - Hi Mary, Don't waste your time with all the preliminary stuff. I buy things at soooper discount at a local fruit stand, lots of things at ten pounds for a buck, like tomatos, jalapeno peppers, and limes. Even the things that I don't get at bargain basement prices I just freeze them the way they are. That includes potatos, cilantro, garlic, habanero peppers, and zucchini. You can't freeze leafy vegetables but you can freeze any kind of citrus.
     When you freeze tomatoes, wash them first and then them dry completely. Put them in a heavy plastic bag and seal it. Freezing breaks the membranes that hold in the juice so they can't be used in salads but they make great sauces and salsas. Need a tomato or a jalapeno pepper? One minute in the microwave and the tomato is ready to work with. Three or four jalapenos for one minute.
     Habanero peppers have very little moisture so I just chop them up with scissors frozen. Drop your potatos in hot water and wash them gently. The skin pretty much just rolls off. The little cells that hold the juice in citrus breaks down some too, so when you want to use them for juice you just nuke 'em and they juice out a lot easier than they did when you put them in the freezer. Fresh herbs that have been frozen have a much stronger flavor than they did before freezing. maddjak@hotmail.com


David W's June 26 reply to Mary C's June 25, 2006 - Hi Mary, I have used frozen tomatoes and they are great. I put them in chili and spaghetti sauce. I add them and use a stick blender on them and they add a good fresh taste to the dishes and of course are low in sodium. I love chili but all the canned ones have so much sodium so I make my own. If you blended the tomatoes and added spices they would make a good pizza sauce. wilsond537@aol.com


Pat R's June 26 reply to Mary C's June 25, 2006 - Hi Mary, Not quite the same but I like my chili with chunks in it so at season's end I just wash and top core the ripe tomatoes. Smaller ones like tennis balls go into a bag whole, while the bigger/better boys (variety) I quarter/halve as needed and freeze. I just throw in the pot frozen while cooking meat, onion, celery and peppers (all can be frozen) and add some canned beans and tomato juice (either home canned or the store kind. I don't see if all you are really making is sauce, frozen would be any different, especially since you parboil to remove skin and deseed. I am just the food buyer/fixer, Nancy the dishwasher does the cleanup! My wife does the laundry and vacuums so it's fairly even. prothlauf@aol.com


Cheryl C's June 26 reply to Mary C's June 25, 2006 - Hi Mary, Jon, and all, We blanche, skin, and freeze tomatoes that we grow every summer. They work very well for spaghetti/pizza sauce, but could not be used like fresh (in salad for example). After being frozen they do break down somewhat and get a little watery, but for sauces it doesn't matter.
     On another note, if you use the recipes from Mrs Dash's web site, be a little careful. I think the sodium level may be a little low on some of them because of the ingredients that are used. Maybe not, but it bears looking at. Cheryl C. cocojo86@yahoo.com


Dilip K, June 26, 2006 - Hi Jon, On "What does Jon Recommend", you mention that heart failure patients could benefit from taking taurine, L-carnitine, creatine, L-arginine, magnesium, and depending on circumstances, CoQ10. Do you know of a reputable company to order these from, please? I want to order the supplements for my mother. I'm a little worried in case I buy some and they have an adverse effect on her health. The doctor said she doesn't mind if mum takes the above, but she doesn't know where they can be ordered.
     I'm also asking for reassurance from Jon and this site that it will be okay for her to take these supplements. Shortly after mum's diagnosis, I took her to an alternative therapist and her health deteriorated rather then improved. Now I feel very insecure about intervening with her standard medication, but I also worry about the side effects of prescibed medicines and wonder whether the supplements can help. Any thoughts would be appreciated.
     Peace and love to all. Thank you Jon, for this life-saving site. namasta9@tiscali.co.uk


Jon's June 26 reply to Dilip K's June 26, 2006 - Hi Dilip, You're asking for a reassurance I can't give you. I know nothing about your mother's health or medical history, and everyone is different. What I can say (and remember that I'm not a doctor) is that these supplements are in general extremely safe as long as taken at the doses in my recommendations. I have taken them all myself and still take two even though my heart's output (EF) is now normal.
     Just remember that these are additive therapy, not replacements for any prescription treatments. Personally, I would add them one at a time, starting at a small dose and working up to the recommended dose. I just don't believe in dumping a whole bunch of new nutrients into your body all at once when it's under stress from a weakened heart, thus the one-at-a-time strategy. Again, if it were me, I'd start with magnesium and keep it low dose for 6 months while slowly adding other supplements one at a time.
     Some people notice improvement with specific supplements but not with others. Everyone is different. If there is no effect after 6 months to a year, she should not hesitate to stop taking any given supplement. I do believe in taking magnesium regardless of noticeable benefit, though. Jon.


Pat R, June 26, 2006 - Hi everyone, On the effect of high humidity, I agree you are not dreaming it. When it gets hot and humid like last week, I try and stay inside with air conditioning as much as possible. I also have COPD and just in the last month or so got on oxygen at night and that seems to dry my nose up. Besides whole house air conditioner use, air filters, and a window when it's really bad to try and get my bedroom to walk-in meat locker status. I like the cold zero and below much better than 85+ except for my fingers going numb.
     I haven't been out west since I got sick 5 years ago so I can't answer about dry and hot. Hawaii was nice 1-1/2 months ago and within 2 hours of getting there both nose dripping coughing stopped. When I got home to Iowa I didn't even make it to the baggage claim before nose running and hacking cough returned (maybe high pollen). It's much cooler here this week with rain, so my house is open and I am fine. Prothlauf@aol.com


Mary C, June 27, 2006 - Thanks everyone, a lot of food for thought. I will try them all and see what my family prefers. MHCarrs@aol.com


Mary C's June 27 reply to Pat R's June 26, 2006 - Hi, I was thinking about asking for oxygen, since I sleep with a life support machine at night. I just am not getting enough air since the two heart attacks. I am going to call my pulmonologist and have a chat. Also, you all may know this - here in California we have Pacific Gas and Electric. They have a special program you can go on to save money on energy. I applied with my PCP's help. I now have a much lower power bill because of my life support machines. Also, they can't turn off power because of the same. If they get a late payment they have to make arrangements with me and not turn off the power. My husband took over the bills and he forgets to mail it in sometimes. We don't put it out anymore because they have been stealing from our mailboxes. MHCarrs@aol.com


Mary C, June 27, 2006 - Hi Everyone, It looks like the UCSF cardiology department wants me. How do I prepare for a big hospital exam? What should I expect? What should I take along as information to share? Any help would be great. Thanks, Mary C. MHCarrs@aol.com


Mary C, June 27, 2006 - Hi, I found that www.drugdigest.org/DD/Interaction/ChooseDrugs is a good place to find out if your drugs can be mixed with vitamins and herbs. They have reported interactions listed there. Whenever I get a new prescription I punch it into here first, then my old ones and see if people across the nation have had any problems. I do this before I spend my money. As you know, we can't return drugs for a refund.
     We are all individuals and can react differently to different mixings of drugs. This site also has a area where you can keep track of all your drugs in printable format so that you can carry your drug list, allergies to drugs and doctors' names with you, just in case you are knocked out or have fainted. By the way I have been thinking of getting a medic alert thing for my wrist. Know of any good ones? MHCARRS@AOL.COM
 
Jon's note: Just wanted to remind everyone that you can make a drug/doctors/allergies list for your wallet/purse in Word on your computer, then your medical information is safer since it's on your computer in your home rather than on an online server. Of course, if this info is already online somewhere else, it doesn't matter.


Martha W, June 27, 2006 - Hi all, On the tomatoes question, to can or freeze, I blanche large tomatoes and peel them. I cut a small X in the bottom of the tomato and the peeling will slip right off after you place it in boiling water for a minute or so, especially if they're super ripe. Plunge in ice water to stop any cooking. I put them in baggies and freeze for sauces. The sauce may be a little watery, but just let it cook a little longer than you would normally cook your sauce. A sprinkle of ground flax seed will help to thicken it a little if you're avoiding cornstarch or flour. It'll give it an odd texture though.
     When I had a big garden, I'd plan my paste tomatoes for every-other year. I'd can and freeze enough to go through 2 seasons so I could use those rows to plant something else but nothing canned can beat the taste of a fresh juicy tomato! My fresh tomato sauces are always on the clear and thin side, but the taste makes up for it.
     Oh, and salsa and pico de gallo made fresh with fresh lime and cilantro are good because you control the amount of salt. Anything storebought, even low sodium, is going to have more than you would add yourself. Martha. mwells@ppfs4.tamu.edu


Roger G, June 27, 2006 - Hi all, In the news, Boston Scientific Corp., new owner of Guidant recalled 50,000 ICDs on June 26, 2005. See: http://www.startribune.com/535/story/516301.html. rogergthree@earthlink.net
 
Jon's note: Skip to the very last paragraph to see which devices are affected.


Jon, June 27, 2006 - Hi Everyone, Here are some FDA pages that report on medical stuff, for what it's worth:

Jon.


Sharmesa W's June 30 reply to Mary C's June 23, 2006 - Thank you Mary for your suggestions. I've been looking through Jon's site index and found a lot of useful information. I try to keep my sodium intake at around 2000mg but I'm no good at it. I do exercise regularly. I work full-time and take care of my 9 year old daughter. I feel just about normal, but my palpitations and arrhythmias remind me otherwise.
     By the way, have you or anyone else experienced this strange feeling - feeling lightheaded for a few seconds then feeling like the blood is rushing through your body, head to toe? This freaks me out a lot. Thank you. sharmesa.williams@cook-inc.com


Mary C, June 30, 2006 - Hi everyone, My blood sugar is getting messed up. It is kind of high. I am thinking of asking my doctor to change my diuretic since thiazides, from what I understand, can miss up your blood sugar but I don't know what to ask for to replace it. I read The Manual so I know of all the diuretics.
     Is anyone here with with DHF who can handle a diuretic without blood sugar increase? I am taking 200 micrograms of chromium to compensate until the change. MHCarrs@aol.com


Kathie P, June 30, 2006 - Hi all, On the tomato subject, I have found that the quickest and easiest way to make fresh sauce is to just core them, stick them in the blender, puree, then into the pot, skins and all. It's delicious. Enjoy, and good health to everyone. Kathie. mountainmama51@juno.com


Peggy A, June 30, 2006 - Hello, I have been regularly monitored for heart disease. There is a "small spot on the front of (my) heart that doesn't beat as well as it should", quoting my doctor, but I have yearly thallium treadmill tests and every of couple years an echocardiogram. The treadmill stress test is always great. I have a mildly low ejection fraction (in the 50%+ range). I take blood pressure and cholesterol-lowering meds. My blood pressure is controlled at a good level but my cholesterol is an ongoing battle.
     Last year I began having small episodes when walking for exercise, only happening a couple of times. I saw the physician assistant at my doctor's office and she said it was just my "accelerating" so quickly that was momentarily causing the heart to not keep up, thus limiting blood to the brain - what happens when you stand up too fast. It was noted in my records. Now, I have experienced the episodes twice when not exercising at all, once in the shower, once while sleeping.
     The symptoms are first mild discomfort in the upper torso, both front and back; then hot-flash-like feeling all over my body (which I've felt before just before fainting); then a pain diffuses across my upper back (none in chest or front of body, and I get extremely nauseated, not like with flu or food poisoning but like severe, severe hunger pains. I just breathe through it, it passes quickly (relatively) and then I'm fine. Now residual fatigue, weakness, pain. It happens rarely though in the last month twice. What do these symptoms fit? pjadams@tm.net


Mike H, June 30, 2006 - Hello, I am wandering what other people's experiences are with taking Paxil along with Coreg, Lisinipril and Inspra (or similar heart meds). My Primary Care Doctor says it will help with my anxiety but I am skeptical about adding another pill to my daily cocktail. My CHF doc says it shouldn't interfere with my other meds. Thanks in advance. skinsfanmh@yahoo.com


Faye B's June 30 reply to Doug H's June 22, 2006 - Hi all, My blood pressure has dropped down into the 70s systolic and the 40s for the diastolic. This is usually after cardiac rehab. I feel somewhat lightheaded and tired but have not passed out as yet. Before I had IDCM, my blood pressure normally was around 90/60. I have brought this to the attention of the Heart Failure Clinic twice and was told that they want my blood pressure as low as they can without me having debilitating symptoms. I too worry that my body's organs are not getting adequate blood supply and oxygen.
     Does anyone else have trouble with low blood pressure? If so, what does your cardiologist say abouth this? Many thanks. fbrown5150@bellsouth.net


Rebecca J, June 30, 2006 - Hi everyone, I just came across this site and I could sure use some info from all of you. I am looking for a good doctor (or a great one would be better!) who specializes in diagnosing and managment of CHF. To me it appears obvious that I have it, as a complication of ovarian cancer (I have had metastisis to both lungs and heart) but as this is not in my other doctors' fields of expertise, I don't believe I am being treated properly for it.
     I am looking for a doctor in Newport Beach, California (yes, the dreaded OC) that works at Hoag Hospital. If anyone has any suggestions/recommendations/questions, please let me know. Thanks, Rebecca. jjre2@msn.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, 2005, 2006 Jon C.

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