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

Cary D's 5-16 reply to Penny M's 5-4     CoQ10 experience
 
Michael S 5-16     really need some ideas
 
David Wilson's 5-16 reply to Jimmie's 5-15     pacemaker implant decision
 
Sandy N 5-16     interesting web site concept
 
Jon 5-18     taking the day off
 
Holly M 5-18     venting on Cleveland Clinic experience
 
Jon's 5-18 reply to Holly M's 5-18     getting the right doctors
 
Sandy N 5-18     update on my last post
 
Tom S 5-18     update on BiV pacer/ICD
 
Richard M's 5-18 reply to Jon's 5-16     pacer numbers
 
Jon's 5-18 reply to Richard M's 5-18     pacer numbers
 
Scott B's 5-18 reply to Marty C's 5-15     dealing with symptoms
 
Barb N's 5-18 reply to Kitt A's 5-14     some suggestions
 
Penny M 5-18     Restoril and fatigue, plus update
 
Giorg's 5-18 reply to Jon's 5-14     how I take my meds, weight gain update
 
Penny M's 5-18 reply to Charle's 5-14     improved EF but worse symptoms
 
Kris 5-20     cardioversion questions
 
Pat R 5-20     zaroxolyn questions
 
Kris P 5-20     a-fib questions
 
Kris P's 5-22 reply to Jon's 5-20     cardioversion
 
Rick W 5-22     turntables, BiV pacers, we'll see about archery
 
Jon's 5-22 reply to Rick W's 5-22     turntables
 
Anil M 5-22     questions about BNP levels
 
Lowell P 5-22     BNP levels and Lasix
 
Jon's 5-22 reply to Lowell P's 5-22     BNP levels and Lasix
 
Roger H's 5-22 reply to Cheryl C's 5-15     thanks for the tips
 
Lisa's 5-22 reply to Pat R's 5-20     zaroxolyn experience
 
Renee W's 5-22 reply to Penny M's 5-11     improved EF doesn't guarantee better physical functioning
 
Lisa's 5-22 reply to Kris' 5-20     my dad's experience
 
Mike I's 5-22 reply to Kris P's 5-20     cardioversion and a-fib
 
Jeannine L 5-22     supplements and lower back pain
 
Jon's 5-22 reply to Jeannine L 5-22     supplements and lower back pain
 
Charles W's 5-23 reply to Penny M's 5-14     higher EF but feeling rotten & more
 
Maryann H 5-23     which doc should I pick?
 
Jon's 5-23 reply to Maryann H's 5-23     don't rely on reputation
 
Emil S 5-23     does anyone else get shaky?
 
Jim C's 5-23 reply to Penny M's 5-11     EF isn't an accurate score-keeper
 
Pat R's 5-23 reply to Lisa's 5-22     taking zaroxolyn before torsemide
 
Kris P 5-25     Dad's been in CHF longer than usual
 
Penny M 5-25     update, thank you all
 
Donna V 5-25     update on trial possibility
 
Debra S' 5-25 reply to Maryann H's 5-23     personal experience with Dr. Starling
 
Michael S 5-25     I'm so weak - any ideas? pacing questions
 
Lowell P 5-25     pro-BNP result questions
 
Jon's 5-25 reply to Lowell P's 5-25     pro-BNP result ranges
 
Debbie T's 5-25 reply to Emil S' 5-23     shakiness, asking for opinions too
 
Scott B's 5-29 reply to Michael S' 5-25     cardioversion and a-fib
 
Lowell P 5-29     pro-BNP, kidney function and more
 
Tony M 5-29     seek experiences with lung nodules, other lung problems
 
Giorg 5-29     seek experiences with glutathione supplement
 
Sharon L 5-29     seek experiences with low oxygen and flying
 
Lee R 5-29     Ginger C died yesterday
 
Larry T's 5-29 reply to Kris P's 5-25     why let him stay in a-fib so long?
 
Jon 5-29     here's my medical conference presentation
 
Marty C's 5-30 reply to Sharon L's 5-29     experiences flying
 
Margaret D's 5-30 reply to Sharon L's 5-29     experiences flying
 
Sharon S 5-30     what about IV diuretics?
 
Jon's 5-30 reply to Sharon S's 5-30     IV diuretics
 
Lowell P 5-30     your presentation, donations
 
Anita S 5-30     your presentation, donations
 


Cary D's May 16 reply to Penny M's May 4, 2006 - Hi, I was taking CoQ10 at 100mg a day for maintenance, until my doctor put me on Lovastatin. Then I began taking 200mg a day. It makes a big difference in my life. I have found the cheapest prices at Swansons.com. I hope this helps. cdeen10@bellsouth.net


Michael S, May 16, 2006 - Hello all, I recently had a Medtronic 2-lead ICD/pacemaker implanted to replace my older single lead device. They have atrially boosted my heart rate to 80 bpm and as a result of several 30 juele shocks I am loading with an 800 mg dose of amiodarone until may 1st then I drop to 600 per day. I was able to walk 3 miles a day with no problems before.
     I cannot now even drag a garden hose without (I am assuming) starving my body for oxygen. There is about a 30 foot fairly steep climb from my mailbox and I have tried to go up it diagonally to no avail. My stomach feels like it is going into small spasms and I get nauseated every time I eat or drink water. The same thing happens if I lie on my side with the added surprise of feeling painful heart beats intermittently. Has anyone gone through this?
     Virtually nothing was wrong (except ventricular tachycardia) prior to the new ICD with pacing, plus an amiodarone (Cordarone) increase. I am in heart failure with an EF of around 20%, which has been unchanged for almost 5 years. My blood pressure has dropped below 110 to 100 over 70, to quite frequently 90 over 50 to 75. Please, any answers may help.
     I take 25mg Coreg, 40mg valsartan, Lasix at 30mg, potassium, aspirin, spironolactone, Coq10, plus about 6 other over-the-counter supplements. Nothing changed med-wise except the amiodorone, and only taking the current valsartan dosage. I hope this finds all of you well, Michael S. michaels@grantspass.com


David Wilson's May 16 reply to Jimmie's May 15, 2006 - Hi, I am having a dual chamber pacemaker put in on June 6. I talked to the heart surgeon and my cardiologist. They told me since I have a low heart beat and bradycardia and I am at high risk of just plain dropping dead one day they thought this device would really help me. I think it will it will make my pooped old heart work a little better maybe.
     If it does not help, they can just turn the darn thing off and I won't be any worse. They said it should help with my fatigue and I am hoping it will. I don't really see any downside to having it put in. I am just happy they are offering to do something. I have had CHF for 6 years and they never offered to do anything before, but just take my meds and hope they help. This new technology may be a good deal for those of us who qualify.
     Ask your doc all the questions you want to ask so you understand the device and the procedure. That is what I did and I am now comfortable having one implanted in me. I could have had it sooner but I wanted to get over my gall bladder surgery and stay out of the hospital at least one month. wilsond537@aol.com
 
Jon's note: About 1/3 of recipients get better, 1/3 stay the same, and 1/3 get worse.


Sandy N, May 16, 2006 - Hi Everyone, I want you all to see what doctors now have to experience what we are going through: "The Heart FX Pod," interesting! See http://www.heartfxpod.com/ bleuskiiisgrl@yahoo.com


Jon, May 18, 2006 - Hi everyone, Until yesterday when my sister called, I forgot I had a birthday coming up so I took yesterday off for my birthday day. Today I awoke to the entire house swathed in banners and signs so I knew I really was a year older. My wife's a nut! But she gave me 2 CDs to replace a pair of albums my broken turntable won't play. No one else would like them, but she knows me. ;-)
     By the way, if you can't afford to send a donation, why not thank Linda by e-mail instead? She gives up a huge amount of time with me to let me do all this. She also changes jobs and even cities so she can make up the income I can't make through the donations we receive. It would make her feel better and she deserves a lot of thanks. Her personal e-mail address is linda@jonsplace.org. Jon.


Holly M, May 18, 2006 - Hi Jon, I guess I just wanted to vent about my last hospital stay and see if anyone else ever encounters these problems. I was admitted by my CHF doc at the Cleveland Clinic because I was holding 12 lbs of fluid gained in the last 3 days. My doc could see I was puffy and that I needed IV Lasix. Once I pass a certain point, oral diuretics don't do anything for me. At the clinic, when you are admitted it doesn't matter who your CHF doc is. Whoever is covering inpatients is who treats you. I have trouble with that because the doc treating you has never seen you before or knows what meds have worked or not worked and that was over a year of trying different things to find the right meds for me.
     I had a right heart cath done and my pressures looked really good (don't know what the numbers were and don't know what they should be). I had only been given 2 doses of IV Lasix and had only lost 3-1/2 lbs but the doc felt because my heart pressures were good I must not be holding fluid and sent me home. He made a change to a lot of my med doses and even added digoxin which makes me throw AV blocks. To top it off, he didn't even give me a script for it! I had to take a Zaroxolyn boost for two days after coming home (made this decision on my own because the next morning I had already gained the 3-1/2 lbs back).
     I tried to argue with both the doc and the nurse practioner that I knew I would not be able to keep control of the fluid with this much still on me, but they had decided to discharge me anyway. You always say you need a doc that will listen to you and if you don't have one you need to change. I am going to have to have a heart tranplant at some point and I feel the best place to be followed until then is at the Cleveland Clinic.
     I would love any suggestions anyone has to avoid things like this from happening again. It's very frustrating for me. Also, I am having blood work done on Thursday because they backed down both my Aldactone and my potassium. My potassium tends to drop very easily and is usually in the 2.8 to 3 range. I did call my regular doc yesterday and he said to follow what the discharge orders were. I feel very confused. Thanks for letting me vent! Holly. holly92756@zoominternet.net


Jon's May 18 reply to Holly M's May 18, 2006 - Hi Holly, Vents don't really need answers but I have some thoughts so here I go again. Your regular CHF doc should be able to give you IV diuretics in his own office unless he is not really a CHF specialist. Bumex is the IV drug of choice with a weight gain like yours, not Lasix. So I would ask why he had you checked into the Cleveland Clinic.
     Secondly, Aldactone raises potassium levels so dropping its dose will lower your potassium level - so why drop your potassium dose at that same time? That makes no sense to me at all.
     Finally, the point you made holds true - if any doc refuses to listen to you when you talk about your own body, he's not a good doctor and I don't give a rat's behind what his reputation is. I would point out that depending on where you live, there are many excellent heart transplant centers. Cleveland Clinic has a reputation for over-all heart care but that doesn't make them right for you. If they aren't right for you on heart failure, why are you so sure they will fit your bill on heart transplant? This may be an institutional attitude of arrogance coming from the top - I won't mention any names but the number one doc there is well known for considering himself the final word on everything. Jon.


Sandy N, May 18, 2006 - Hi all, I saw the video on the site in my last post on the news here in my town. I can now explain it. A doctor sits in what would be a video game seat with foot peddles and a steering wheel, like driving a car with the flat panel television screen giving you the feeling of walking. As you're using your feet to "walk" along a nice lane or pathway in a park, all of a sudden the foot peddles get harder and harder to press, then the harness of sorts around the chest gets tighter and tighter until the person cannot breathe as before. Simulation is the key. They say that doctors can now understand what we are feeling. That might be of help to us, having them know the feeling! See www.heartfxpod.com/. bleuskiiisgrl@yahoo.com
 
Jon's note: A similar device has been around for at least 2 years to show doctors the similarity between how a cancer patient on chemo feels and how an advanced CHFer feels.


Tom S, May 18, 2006 - Hi all, Friday, April 28, 2006 was BiV pacer/ICD day for me and since that date I have not noticed a tremendous difference in anything other than I dropped 20 lbs (of fluid) in seven days. I believe I feel less fatigue but do have periods when I just doze off and sleep for an hour or two. Sometimes I doze off in mid-sentence which bothers me, but doesn't usually bother the listener who probably was bored to tears anyway. My wife uses those moments to slink out of the room and catch up on her CSIs and Law and Order television shows.
     She is so heavily into those two shows that I make the musical "DOINK! DOINK!" sound anytime I make a declaratory sentence. bigheart@muchomail.com


Richard M's May 18 reply to Jon's May 16, 2006 - Hi Jon, You posted to David Wilson's May 16 numbers on how many people get better with a pacemaker. Are you saying this about a pacemaker after it is implanted for bradycardia? If so, I am a little shocked. I always figured it would help a whole lot more people then 1/3. richard.malczewski@comcast.net


Jon's May 18 reply to Richard M's May 18, 2006 - Hi Richard, This applies to BiV pacers in general among the heart failure population. Most cardiologists can't resist implanting a BiV device whenever a pacer is called for so many people who don't specifically fit the guidelines and would do well with a "standard" pacemaker end up with them. After seeing the stats on how over-optimistic surgeons are about all procedures and their results, I have become a bit more skeptical on what patients' expectations should be compared to the operator's stated expectations. It's like ICDs - I was amazed to discover that they are not a foolproof measure against sudden cardiac death. Jon.


Scott B's May 18 reply to Marty C's May 15, 2006 - Hi Marty, We are in a similar boat. I get numbness in my hands, arms, etc. I make sure my feet stay covered. These are probably normal symptoms of our CHF. If you wear clothing like pajamas, this can make a difference. These things all work for me:
     Sleep with a pillow between your legs, one in your arms, and one slightly elevating your head. The main reason my circulation gets cut off is due to one limb overlapping another during the night. Wear warm socks to bed. Circulation is always going to be worse in the extremities. Make sure you are wearing loose clothing and that the clothing is not being pulled tight. If your feet ache, sit on the side of the tub and put them in hot water to get rid of the ache. Dry them and put into warm socks. If your ciruclation is really bad, you can elevate your feet as well.
     Keep up the exercise. I think it makes a huge difference. Best of luck. Scott Brown. scott.brown@sunlife.com


Barb N's May 18 reply to Kitt A's May 14, 2006 - Hi Kitt, It's a rough go to fight CHF with no health insurance and the high cost of meds. You might see if your sister would be willing to read The Manual on this site. Limiting salt, improving the edema and apnea (often these go hand in hand) and knowing there is hope might help her get over her denial.
     Please try and let go of your anger over her being irresponsible about her self-care. This disease can sneak up on one over time (particularly if it accompanies hypertension or diabetes) and a lot of edema and fatigue can make thinking and decision-making pretty fuzzy. Plus, if you are out of breath and deconditioned, exercise just plain hurts! You will feel better later if you let the anger go and just focus on what things you can try from a distance.
     Does she have any support system where she lives or could you afford to visit her? She's probably pretty down about this diagnosis too. It often is phrased like it's an instant death sentence (which it isn't necessarily) but the hypertension does increase her risk. Good luck and God bless. catzamillion@verizon.net


Penny M, May 18, 2006 - Hi, I discussed Restoril with my internest and he said Restoril is a mild tranquilizer and is not the cause of worsening fatigue. I do feel better, but I'm not doing as much since the terrible fatigue about 6 weeks ago. If I do push myself however, the fatigue comes on and I stop and rest. I am limited in how much I can do. I do not believe this is depression because it is directly related to physical exertion. pmechler@midsouth.rr.com


Giorg's May 18 reply to Jon's May 14, 2006 - Hi Jon, about ACE inhibitors and beta-blockers, I take them three times a day. That's mainly because my beta-blocker is sotalol that is supposed to be taken every 8 hours or so. I was asking a way to boost the effect of diuretic because I have the feeling that, besides taking them with food, it may be better to take diuretics when blood pressure in the lungs is higher, so for example far from ACE inhibitor and beta-blocker assumption and during physical activity.
     Also, I want to talk about my first days with torsemide. I noticed that torsemide lasts longer (as well known), but also that gives me some headache that I never experienced previously. Maybe because I am taking too much of it at 10 or 20mg a day when I used to take 25 or 50mg of furosemide (in Italy, furosemide little pills are 25mg). I still cannot reach what I think is my right weight, the weight I had a couple of months ago.
     I am beginning to believe that the swollen belly I have is not fluid, but fat! I put on 3 or 4 pounds lately. This is strange though, because I do not eat so much. Thank you. giorgclunei@hotmail.com
 
Jon's note: I think bioavailability of diuretics is pretty much set in stone without boosting it through other meds or meds that act differently (on different parts of the kidney). Physical activity will cause more rapid uptake but shorter duration so it all evens out in the end.


Penny M's May 18 reply to Charle's May 14, 2006 - Hi Charles, You and I are two of many who are battling better EF numbers and worsening symptoms. I think having the why question answered will calm our minds. What is your cardiologist saying about your increased fatigue and improved EF number? pmechler@midsouth.rr.com


Kris, May 20, 2006 - Hi everyone, I would like to find out more about cardioversion. My father has been in CCU for several days and he has been in a-fib too long. His doctor says his heart beat is about 130 beats per minute but they now have his heart failure under control (class 4). Dad is 65, diabetic and he is scheduled for a cardioversion. He is very nervous. We look at his heart monitor and it is all over the place. Please, if anyone knows about this test I would love more info. Thanks, Kris. kpstyling@comcast.net
 
Jon's note: Cardioversion is a shock to stop the heart. The heart will then restart on its own, often restoring itself to normal rhythm. The patients should be sedated first in all but emergency situations. It's not foolproof but there aren't a lot of other options.


Pat R, May 20, 2006 - Hi, Does anyone know if metolazone (Zaroxolyn) are the same thing? Also, will it boost/turbocharge torsemide or does it only work for Lasix/furosemide. Thanks. prothlauf@aol.com


Kris P, May 20, 2006 - Hi, I'm looking to find out what is going on with my dad. Dad is 65 with class 4 CHF. He is diabetic. Dad has been in the hospital several days and they have cleared up his heart failure some. However he was scheduled for a cardioversion but they could not perform this shock because they could not rule out the fact that a blood clot would be thrown. So my question is, how do they control the a-fib if medicine does not work. Opinions! Thanks, Kris. kpstyling@comcast.net
 
Jon's note: Is he on a blood thinner? Dofetilide is often tried, or a Maze procedure might be done. Some doctors use amiodarone but none of the drug choices are by any means foolproof and amiodarone has terrible potential side effects. Our links page has links to a-fib message boards.


Kris P's May 22 reply to Jon's May 20, 2006 - Thank you Jon for your information. Yes, dad is on Coumadin. They are releasing him from the hospital and he will be back in 6 weeks for a second try for a cardioversion. Thanks for your thoughts, Kris P. kpstyling@comcast.net


Rick W May 22, 2006 - Hi Jon, I'm sorry to hear about your broken turntable. Music is my most important therapy. It is like meditation to my physic. I would like to send a turntable to you. I have either a Technics SL1200 direct drive or a Thorens TD-165 belt drive, your choice. I have a manual for the Technics that I can send a copy of, but not the Thorens. Lots of info can be found about Thorens on the web. Do you have a decent cartridge?
     By the way, I finally had my recalled St Jude ICD replaced on March 27th with a BiV device. So far so good, I seem to have more stamina but am still on restricted duty for the new lead. I am going out to my first 3D archery tournament since the surgery in the morning, I'll find out! Send me your address and preferance so I can FedEx your turntable. Rick. rjw7798@aol.com


Jon's May 22 reply to Rick W's May 22, 2006 - Hi Rick, That would be great! I have about 400 vinyls, most cherry, including quite a few that aren't available on CD from antique Johnny Winters to certain symphony performances. My cartridge is about shot but it is a moving coil cartridge that did its job for a ridiculous amount of time. If you could e-mail me a good source for an appropriate cartridge so I can see what I can afford, that would sure help. The Technics would probably be the way for me to go because it's so easy to find info on how to set them up, regardless of their age.
     Our address is Jon Costlow, 4 Castlewood Court, St. Peters, MO. 63376. You have no idea how much I appreciate this since I bought all the hardware specifically for vinyl, from Hafler power amps (for bi-amping) to a Series 20 preamp to a Crown electronic crossover to control the power amps. My kid brothers thought I was crazy to be turning vinyl on 25 year old electronics until I turned it up for them in our rec room - they no longer are impressed by modern day Bose and their other previous preferences. <g>
     Gotta have music or I'd go nuts sitting in front of the computer so much. Can't motivate to lift the weights without it either. This would be sent to me as an individual, not to our company so it would not be tax-deductible. If you need a tax deducation, point me to a good place to buy a used turntable and I'll see what I can afford. Locally, there's not much. Jon.


Anil M, May 22, 2006 - Hi, During a recent test, I found that my EF had increased from 10 to 20% but my BNP, which had never been measured before, was 1400! What is a normal level of BNP? How can BNP be reduced? Is high BNP an accurate predictor of mortality as they claim? anil_malhotra@hotmail.com
 
Jon's note: When heart size and pressures normalize, BNP usually comes down, but not always. Personally, I do not believe mortality can be predicted based on BNP level. Besides yours might have been 3000 before and thus be steadily improving - it's the trend that counts more than the actual result.


Lowell P, May 22, 2006 - Hi Jon, My doc has me on 40mg Lasix three or four times a week and when he checks during my six week appointments he always says I am dry and not retaining fluid. My BUN is quite high, about 45+ indicating I am not retaining fluid. I suggested to my doc I cut back further on Lasix and he says, "No, things are good as they are." I suggested I watch for a weight gain and then take some Lasix. How important is it that my BUN is so high? I understand that being too dry raises BUN. Our lab is now using the Pro-BNP test method and my BNP is now about 3300. It had been about 750. I'd like to hear what some other folks have to say about their BNP and your opinion. Thanks, Lowell. Lpepper3m7@aol.com


Jon's May 22 reply to Lowell P's May 22, 2006 - Hi Lowell, You've educated yourself on your illness well. If I were in your shoes, I would want to do exactly what you suggested you do: take Lasix as needed per daily weights. Reduced kidney function raises pro-BNP as does lung disease and high blood pressure so improving kidney function should reduce pro-BNP and BNP level. That's my take, anyway. Also, don't forget that pro-BNP levels vary hugely in different age groups, getting naturally higher as we age, so all such readings should take the patient's age into account. Jon.


Roger H's May 22 reply to Cheryl C's May 15, 2006 - Hi Cheryl, Thanks for the tip on the Triskets. I have been doing the low-sodium Ritz crackers for awhile now, but didn't know about the Triskets or Wheat Thins. rkharmony@highstream.net


Lisa's May 22 reply to Pat R's May 20, 2006 - Hi Pat, Metalozone is the generic form of Zaroxolyn. My dad takes it as a booster to furosemide, so I cannot say how it works with torsemide. I do know that my dad is to take his 1/2 hour prior to the furosemide for the best benefit. He has been on this booster for a year or so, and it does seem to work. Best of luck. zeigler@zbzoom.net


Renee's May 22 reply to Penny M's May 11, 2006 - Hi Penny, My husband has DCM and CHF. His last echo showed that his EF has gone from 18% to 40%. However he is experiencing problems like yours.
     He still gets really short of breath doing little things. He has fatigue, he can't hold out to do much. He works in the yard a little (30 mintues tops) and has to sleep for at least an hour afterward. His cardiologist can't explain it. He is also still having to take direutics twice a day, Lasix and spirolactone. He was also sent to a neurologist but he didn't find anything in his area to account for this. Lots of luck to you! rfjwells@aol.com


Lisa's May 22 reply to Kris' May 20, 2006 - Hi Kris, My dad is 76, diabetic, has CHF, DCM and has had a mild stroke. He does amazingly well, but we have certainly had our moments. In 2001, he was in cardiac arrest twice. He takes Coumadin (warfarin), amiodarone (Cordarone), quinapril, metalozone, furosemide, potassium and Toprol-XL. He had a cardioversion several years ago done as an outpatient, and his was successful. The procedure was quick, and he was mildly sedated. He did not even know it happened.
     My dad was originally on 400mg of amiodarone a day, and now several years later that has been cut back to 100mg per day. He did have side effects when he was on a higher dose, but now they have subsided. Prior to his cardioversion, he had a TEE to study his risk for blood clots and they did not find anything. Best of luck to you. zeigler@zbzoom.net


Mike I's May 22 reply to Kris P's May 20, 2006 - Hi Kris, I have been in a-fib for just over 5 years, not the rapid heartbeat but the irregular heart beat. It does not come and go, it is just irregular 24-7. The doctors at the Heart Center in Salt Lake City, and the University of Utah Medical center have all told me there are no studies that suggest patients with a-fib live less long than patients that do not have it. I asked them all about cardioversion and their opinion was that it is not very sucessful most of the time. Both centers also said the side effects of the medication are sometimes quite unpleasant. I am now on Coumadin at 5mg daily and have been since 2001 with no apparent side effects. Just my experiance, Good luck, Mike. msisbell@earthlink.net


Jeannine L, May 22, 2006 - Hi Jon, I have a question regarding taking supplements. I seem to experience pain in my lower left back (maybe my kidney) when I take daily supplements. The pain goes away as soon as I stop taking the supplements. Could it be that I'm taking too much of something or maybe a poor brand? I buy everything at Wal-Mart or CVS. Would it be better to shop at a health food store? Thanks, Jeannine. jeannine_lewis@yahoo.com


Jon's May 22 reply to Jeannine L's May 22, 2006 - Hi Jeannine, If it were me, first I would find out which supplement is the cause by removing them one at a time. This would mean taking all except one. If that didn't help, re-add the one you stopped and take all but another one. It could be a brand, an interaction between substances, or an individual reaction to one or more of them. If you do this with all of them and it doesn't help, it's probably an interaction and you'll have to get more complicated in discovering the cause. Jon.


Charles W's May 23 reply to Penny M's May 14, 2006 - Hi Penny, Five years ago my EF was 30% and my heart was enlarged. Several months ago, it was 64% and no longer enlarged. I learned this not from my cardiologist (whom I don't particularly care for, and I plan to replace) but during a series of tests at Ohio State University where I applied for an experimental research program. I was disqualifed because of the high EF.
     I was diagnosed however, with sleep apnea. For two months I've been sleeping with a CPAP with no improvement whatever. I am chronically fatigued and experience shortness of breath. You know the feeling! I'm really not sure what's going on, except I feel wretched. I know that Jon also had a high EF and felt rotten. I'm taking metoprolol and lisinopril plus Effexor for my insanity. If there's any other magic drug or treatment out there, I'd love to hear about it.
     I must also tell you with terrible guilt and shame that I do virtually no exercise because I'm so tired. I lie about the exercise to most people, just as I lie about flossing three times a day. CClmbs@aol.com.


Maryann H, May 23, 2006 - Hi Jon, I was wondering if you have heard of a Dr. Starling and Dr. Patrich Tchou at Cleveland Clinic? We are from Rochester, New York and we are affiliated with Strong Memorial Hospital. I think my son, who has IDCM has a great cardiologist but because of Cleveland Clinic's standing, I decided to also go there and have them look at my son also. I am very happy with my son's doctor here in Rochester but I wanted the best for my son so I went to Cleveland but am not sure how happy I am with them. I am just wondering if you have any opinions on Cleveland Clinic or any of those doctors. mahall1958@hotmail.com


Jon's May 23 reply to Maryann H's May 23, 2006 - Hi Maryann, I'll carry on a bit although my opinion on choosing the right CHF doctor is stated at the top of our heart failure specialist page. I don't give a rat's behind about any doctor's reputation. The more well-known most doctors get, the more they become adminstrators or researchers and the rustier they get at treating real-life CHFers on a daily basis. I'll put my CHF doc in Kansas City up against any CHF doc in the country with absolute confidence that he is every bit as good if not better.
     Dr. Starling is outright famous but I would think he's getting on in years by now, although I didn't check this so I don't know. You should usually consider age when picking your doctor. The older he is when you start seeing him, the sooner you'll have to find a new doc. Dr. Tchou's name does ring a bell, but I can't remember why or even if it's a good or a bad bell, sorry.
     Pick a doctor who's right for you - in this case, for your son. It would help if I knew whether he was a minor or not. Do not rely on reputation but on attitude (does he listen, does he contradict himself at times), currency of knowledge (is he familiar with new treatments as well as standard ones), availability (does he return phone calls or e-mails in a timely fashion), and other concerns individual to you. Also, if he can't say those 3 little words when they apply (I don't know), look for another doc. I hope it helps, Jon.


Emil S, May 23, 2006 - Hi all, I'm shaky lately. Usually someone else notices it before I do. Is this a side effect to a med, or a side effect of pretending to be healthy? emil@rnworks.com
 
Jon's note: Can you be more specific about being "shaky?" I'm very interested in this.


Jim C's May 23 reply to Penny M's May 11, 2006 - Hi Penny, One thing I have learned from reading these posts over the last 6 months is that EF does not tell the story for me. In November I had an EF of 20% at diagnosis but I started to walk and excercise as much as I could. I would get tired, let me tell you. I would sleep all afternoon some days.
     Very quickly I built up the ability to walk to work, which is 2-1/2 miles away. Before March, I was able to walk to church, which is almost 4 miles away. At that time, my EF was 35%. I have since gone for a 3-hour bike ride and several shorter rides. I continue to get strong but my EF has not been measured since March.
     Basically, don't hang your hat on your EF. You can feel bad with a good EF and you can feel good with a bad one. I don't know enough to confidently make any suggestions, but walk if you can. Don't slow down more than you have to, and God bless. djamescassidy@hotmail.com


Pat R's May 23 reply to Lisa's May 22, 2006 - Hi Lisa, That is what I had thought about them being the same but one online script place kind of indicated they were different unless I misunderstood. Yes, I take zaroxolyn 1/2 hour before torsemide and from my personal experience it works just as well (or better) as it does with Lasix; I went from 252lbs Saturday morning to 238lbs Monday morning. I get my blood tested in about 10 days for electrolytes and whatnot. I am a little dizzy with the weight loss also have weight stable this morning at 238-1/2 lbs so maybe I am already dried out. I will see Wednesday and if the same might just "turbocharge" every other day. Thanks, Pat R. prothlauf@aol.com


Kris P, May 25, 2006 - Hi everyone, I'm just curious - Dad has been in heart failure now 8 days. It seems like in the past it would just take couple of days for him to turn around. He has been in a-fib for weeks. Maybe the heart can't keep up. Thanks, Kris. kpstyling@comcast.net


Penny M, May 25, 2006 - Hi everyone, I want to thank all of you who have written to me. It is so comforting knowing I'm not the only one who feels like this. I hit the wall again today. First, I want to add that I also did 30 minutes on the stationary bike last night. Today started out well but it ended with sleeping for 2 hours. I was so exhausted and when I first laid down my breathing was like someone who had been running - deep and fast. Does anyone experience this? I recovered and went to sleep. It just makes me wonder why and what is next. God bless you all and thank you for your support. pmechler@midsouth.rr.com


Donna V, May 25, 2006 - Hi, This morning I went for my second qualifying round for the Diovan study. I flunked blood pressure and am no longer a part of the study. My blood pressure was too low to allow me to continue with another blood pressure lowering drug like Diovan, an ARB. I get paid 60 dollars for showing up two times, got some free meds and my cardio's office seems to know me better. I take that as a plus. Donna V. dmvdiity@aol.com


Debra S' May 25 reply to Maryann H's May 23, 2006 - Hi Maryann, Dr. Starling is my doctor and I think he is very competent. He doesn't always call back, but someone always does with info from him. If he doesn't know something, he says he doesn't. Also, he is not very old. At the most, early 50s. r_steinberg@sbcglobal.net


Michael S, May 25, 2006 - Hi all, I am still not able to walk very far, although they have cut my amiodarone down to 600mg per day, my Coreg to 6.25mg twice a day and my valsartan down to half a tab in the morning only. Please, is there anyone who can shed some light on why I am so weak? Is it because my heart rate was boosted to 80 beats per minute from 40? Can cardioversion damage the heart further with heart failure? I was shocked 7 times in a 4 day period. My EF has not changed. Also, I am being paced atrially. I was not paced at all before the new ICD. I did really well for about 4-1/2 years. Thanks ahead of time, Michael S. michaels@grantspass.com


Lowell P, May 25, 2006 - Hi Jon, I have been searching the web for some data on Pro-BNP. I can find a lot about the chemistry but have yet to find some classifications or prognosis by the values. I found that it is 4 to 10 ten times bigger than the old BNP readings and age-sensitive but nothing about typical ranges for folks with CHF. I was about 750 in the old method and my last lab was 3400 with the new. I'd like to see what kind of risk category I am in in reference to mortality etc. Any web sites or data would be appreciated. I'll put a check in the mail this week. I hope you're feeling well. Do you plan on posting or making your speech available? Regards, Lowell. Lpepper3m@aol.com


Jon's May 25 reply to Lowell P's May 25, 2006 - Hi Lowell, You aren't finding this information because it is considered unreliable at this point in time. For starters, the method used in the lab to measure it can change the result in the same person by 15 to 20%. Different units of measurement used by different labs make published material very hard to interpret as well. As I said before, a lot of non-CHF factors seriously affect test results, including kidney dysfunction, lung dysfunction, age, sex, thryoid function, heart arrhythmias, and even the underlying cause of heart failure.
     I haven't seen any numbers for people with confirmed heart failure that are reliable yet. I can give the currently used "normal" or "reference" ranges for healthy people but not for those with heart failure.
     Personally, I don't think the test is of much use in people with chronic heart failure, only in making sure a new diagnosis is correct. Sorry I can't help but I don't think reliable data is out there yet.
     I'll try to put up a copy of my presentation over the weekend. It didn't occur to me since it was aimed at a specific audience speaking on ethical issues rather than clinical issues. I really used my presentation to make the question and answer period the time for getting points across, and it worked. Jon.


Debbie T's May 25 reply to Emil S' May 23, 2006 - Hi, I will jerk while I'm sleeping and wake myself when all parts of my body jerk multiple times, enough to have to get up and walk around a bit. On some days I feel a shake like cold but not cold, and eating helps some. I told my doc it's hard to eat food with taking so many drugs but you have to eat with many pills or you will wear your stomach into a ulcer. Lately they have talked about ablation but my cardiologist said let's try digoxin (Lanoxin) first. Which would you do, Jon, or others who have had to made that decision. Thank you, Debbie T. debs4246@yahoo.com


Scott B's May 29 reply to Michael S' May 25, 2006 - Hi Micheal, I am assuming you received the cardioversion procedure to correct a problem with atrial fibrillation. You do not mention why you were cardioverted so many times in a relatively short period so I wonder if they were unsuccessful in returning your heart rhythm to normal? Do you (or did you) have a flutter? Assuming trial fibrillation is still a problem, this would explain your weakness, shortness of breath, etc. Your cardiologist will be able to tell you if this is a permanent situation.
     The first cardioversion is usually highly successful in restoring the heart's normal rhythm. However, the positive effects only last a year (or more) in 20% of the cases. Subsequent cardioversion positive benefit often lasts a decreasing amount of time until it is no longer effective. I wonder where you are at in this process? Thanks, Scott B. scott.brown@sunlife.ca


Lowell P, May 29, 2006 - Hi Jon, Thanks for the reply about Pro-BNP. This has bugged me for quite some time. I have come to the conclusion it is a worthless test for now. With the old BNP I could at least see if I was getting better or worse. Regardless of the numbers it was a constant and if you ignored the value and looked at the trend you could at least get a feel for how you are doing. I saw today that too much meat can raise BUN and BNP too. I saw where a bleeding ulcer can raise BUN to 40+. Also, not drinking enough water or maybe too many diuretics. I think I need a new doctor. I like this man but he doesn't really tell me much and he is not a CHF specialist.
     Thanks for your great work, Jon. When I am uptight over this CHF stuff and mortality, I find comfort in this site and your wisdom. Lowell. Lpepper3m@aol.com
 
Jon's note: You make a good point about dehydration. It skews almost all test results and its physical effects are almost just like CHF - extra insomnia, fatigue, confusion, lightheadedness, reduced kidney function, etc,..., so watch out for it.


Tony M, May 29, 2006 - Hi all, As some of you know, I went back in January for testing at Pittsburgh by Dr. Patel for a stem cell therapy study. I had to go through 4 days of testing by them for the study. The found I had hypoxia (lack of oxygen) caused by my lungs and they did a test where I took a breath of xenon gas and they took pictures and they also did x-rays. Dr. Patel had noted that I complained in the past on my records when my heart was functioning the best and he was smart enough to test my lungs and found out my lungs weren't releasing the spent air and I was rebreathing my old air and it was why I was shortwinded more so that I should have been by my heart levels alone.
     I came back and now my pulmonary doctor who did a gallium test and x-rays can't find problems and says my oxygen levels are okay. I have been using a CPAP for three weeks after I found out I had sleep apnea. I am not believing in three weeks a 4mm nodule is gone and I have normal levels that quickly. The pulmonary doctor also said my heart was hurting my lungs and I should get the stem cells. Dr. Patel said I had good heart function but had lousy lung levels.
     Is there a chance that Pittsburgh had better testing equipment? I want to be better but I find this to be weird. The film showing the nodule wasn't at the pulmonary doctor's office and I said something about it and he said I don't care if I don't see it on my tests - it's not there or it's gone. If nodules can leave that quick would someone let me know it's possible? Thanks, Tony. Ynotmyrick@yahoo.com


Giorg, May 29, 2006 - Hi all, I have read that, "It seems that progression of dilated cardiomyopathy due to LMNA mutation (mine) is associated with tumor necrosis factor alpha expression." Some literature suggests that N-Acetylcysteine could be a potential anti-TNF therapy. V. Decostre said, "Increased Tumor Necrosis Factor alpha expression in dilated cardiomyopathy due to LMNA mutation is prevented by N-acetylcysteine treatment." I also read that N-Acetylcysteine makes the body produce glutathione.
     My question is: anyone ever heard about glutathione supplements? Anyone is taking it? giorgclunei@hotmail.com
 
Jon's note: Hi Giorg, Effective anti-TNFa therapies (etanercept, infliximab) have all bombed up till now. TNF causes short-term benefits but long-term damage, thus may be a poor therapy target. Or not. The only glutathione CHF trials I have seen show some promise but have only been tried in rats. However, one small human trial showed that exercise can improve this level in CHFers. See Circulation; 2005 Apr 12;111(14):1763-70. Epub 2005 Apr 4.


Sharon L, May 29, 2006 - Hi, Regarding sleep apnea and CPAP, I got a CPAP 3 years ago almost. It didn't improve my life right away, perhaps after 3 months or so. Now I find that I need a chin strap because my mouth drops open unless I am in exactly the right position. Mouth opening stops you from receiving the benefit of the air pressure into your nose and throat. If you wake up with a dry mouth, that should be a clue. I have central sleep apnea where my oxygen level drops when I'm sleeping.
     I'm considering taking a flight this summer, having not flown for about 7 years. Do people have trouble flying? I've never been told not to, but wonder. My pulse ox is often low. lyons@sasktel.net


Lee R, May 29, 2006 - Dear Jon and Friends, I wanted to let you know that Ginger Criscuolo passed away early yesterday morning. Her daughter Mary and son Chris tried to do CPR but she was already gone. Lee. Leezie07403@yahoo.com
 
Jon's note: I sent a note to Jack and Jill, Lee. Ginger was down home tough and I had a great deal of respect for her. She was a person who did instead of just talking about doing.


Larry T's May 29 reply to Kris P's May 25, 2006 - Hi Kris, I would have to ask why his doctors have left him in a-fib so long. I have been in a-fib 3 times in the past two years. About 3 months ago it happened 2 times in 6 weeks. I was cardioverted each time. At that time I was put on betapace to pace my heart and so far that seems to be working but only time will tell. My doctor tells me not to wait more than 48 hours after going into a-fib to get it done. Larry T. carolthornton@comcast.net


Jon, May 29, 2006 - Hi everyone, Here's a link to my presentation given at last month's medical conference in Washington, DC. I apologize for taking so long to make it available. See chfpatients.com/conference_presentation.htm. Jon.


Marty C's May 30 reply to Sharon L's May 29, 2006 - Hi Sharon, I am a CHFer on active duty in the military, so I often am required to fly on temporary assignments. I don't have trouble with short flights of 90 minutes or less, but the longer cross-country flights generally give me shortness of breath episodes. Last time this happened, I spoke with the flight attendant and he got me some oxygen. After a minute or so on the oxygen, I felt much better and caught my breath. He left it with me for the remainder of the flight, and they didn't charge me anything. When I checked for oxygen availability for future flights, I found it is a service offered by all major airlines, and generally costs $100 per flight. Food for thought. Marty. padre45@aol.com


Margaret D's May 30 reply to Sharon L's May 29, 2006 - Hi Sharon, Yes, some of us do have trouble flying. I am on oxygen at night for the last 3 years or so. My saturation falls lying down even when I am wide awake. I flew twice last year and did not feel right, so I broke down and bought a new pulse oximeter on E-bay for 200 dollars US. The next flight I was on I monitored the level and I averaged 86% on the way up and 85% on the way home. So now I have to fly with oxygen and let me tell you, that is a pain in the neck!
     I switched providers so I could get a portable concentrator for free to take on the plane. Some airlines are now allowing 1 of 2 different kinds on their planes. If your sat is already low on ground, you may well need extra oxygen flying. Cabins are only pressurized to about 8000 feet I am told, and on my last flight last week we went up to 41,000 feet and I had to turn it up to 5lpm which was the maximum and I still went down to 87% when I was talking! I guess this was God's way of telling me to shut up!
     Anyway, e-mail me if you have any questions that I can answer. mdavis10@tampabay.rr.com


Sharon S, May 30, 2006 - Hi, I just stumbled on this site today. I'm 51, had a pacemaker implant last August due to complete heart block from radiation 25 years ago. In November, they found a-fib. Taking Rythmol for that. In February, they did a stress echo and said I'm "out of sync." I am supposed to be referred for electrophysiological studies but got lost in the system, Finally, my insurer turned this down and said they needed more info, but before that could be obtained my cardiologist moved.
     Now I'm trying to get my primary care doctor to refer me to a new cardiologist. About 10 days ago I started feeling really bad, with trouble breathing. I got a chest x-ray that showed fluid in my lungs. The doctor prescribed Lasix one week ago. Nothing happened and I am going back tomorrow. I started looking around the Internet and I see that the next step might be IV diuretics. Has anyone had that done? Can they do that in the doctor's office? How long does it take and what can I expect? Thanks for any info you can give. ericsgramma@yahoo.com


Jon's May 30 reply to Sharon S's May 30, 2006 - Hi Sharon, The question may be, "How many of us have not had IV diuretics at some point?" Yes, it can be in a heart failure specialist's office easily. Expect to start peeing very soon, very intensely but not for as long as you would with a pill. Expect to lose some weight. <g> It takes about 10 minutes to set up, 20 minutes to get done, and you'll start peeing inside of 15 minutes if you're retaining fluid. After that, it's time to start daily morning weighing with an agreement on how to alter diuretic pill use if your weight goes up too much in 24 hours.
     If anyone had a different experience, please speak up. It will of course depend on the diuretic used, the dose, and the amount of extra fluid you are really retaining. Jon.


Lowell P, May 30, 2006 - Hi Jon, I read your presentation to the doctors at the conference. I think you said what we all would like to say if we were as articulate as you. I felt like jumping up and screaming, "Tell em Jon!" I am surprised and saddened that your donations aren't larger than you say. Five times that amount would be more like it. Thanks Jon, for saying what we all would like to say. I am going to give my doc a copy. Lowell. Lpepper3m@aol.com
 
Jon's note: I made about twice this much on Social Security Disability. On the other hand, I wouldn't have such accurate things to tell doctors without our readers sending them to me, would I?


Anita S, May 30, 2006 - Hello Jon. I read your presentation and it was extremely well-written. I believe that you covered the problems that most of the CHFers wanted presented. I hope you get a lot of donations from this conference and some feedback from the doctors there. Phil and I use the information on your site quite often. We hope that you are able to continue this site, but if you can not afford to do so, we certainly understand. We would be willing to buy a membership if you have to go that route to keep going financially. Keep up the good work, and I'm sure that God is well pleased with you and Linda. Take care, Anita. dreamersila@netscape.net
 
Jon's note: If it ever comes to membership, yours is free. I know how badly Phil has had it, yet you have donated over the years regardless. You can't imagine how much I appreciate it. Hang in there.


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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