The paperwork never ends The Archives
October 16-31, 2005 Archive Index CHFpatients.com

Jon 10-16     feeling better
 
Valerie R 10-16     hot tubs, jacuzzis and heart failure
 
Roger H's 10-16 reply to Jim M's 10-12     folic acid therapy & others
 
Joy 10-17     seek SSA disability/return to work experiences
 
Raymond A 10-17     web site about alternative treatments
 
Roger G 10-17     web page about heart scans
 
Jon 10-18     generic Norvasc approved - amlodipine
 
Marty C 10-18     you should read this page
 
Donna H 10-19     does anyone have issues with sense of smell?
 
Jack D's 10-19 reply to Donna H's 10-19     sense of smell issues
 
Tony M's 10-19 reply to Donna H's 10-19     sense of smell issues
 
Tom S' 10-19 reply to Donna H's 10-19     sense of smell issues
 
Lori K 10-19     Coreg raised my EF, shot in neck coming up
 
Lowell P 10-19     EF, BNP, really tired, Medicare question
 
Jon's 10-19 reply to Lowell P's 10-19     EF, Coreg, implanted devices
 
MaryAnn H 10-21     when are PVCs dangerous?
 
Chrystal H 10-21     need heart failure information
 
MaryAnn H 10-22     what should I ask doctor about Holter results?
 
Donna H 10-22     sense of smell
 
Sandy N's 10-22 reply to Chrystal H's 10-21     get a heart failure specialist
 
Ben B's 10-24 reply to MaryAnn H's 10-22     talking to the doctor
 
Jack D's 10-24 reply to Donna H's 10-22     sense of smell experience
 
Tom S' 10-24 reply to Donna H's 10-22     sense of smell experience
 
Jacky B 10-24     some good news! & question
 
Cheryl C 10-24     high potassium level & more
 
Jon's 10-24 reply to Cheryl C's 10-24     high potassium level & more
 
Joe G 10-24     can one company's warfarin be different than another's?
 
Mary Anne M 10-24     has anyone stopped spironolactone?
 
Tom S' 10-25 reply to Joe G's 10-24     Coumadin versus generic warfarin
 
Beckie H 10-25     low blood pressure on Coreg
 
Cheryl C's 10-25 reply to Jon's 10-24     blood potassium level & more
 
Rick W's 10-25 reply to Roger G's 10-9     ICD recall and traveling in space
 
Cheryl C's 10-25 reply to Donna H's 10-22     sense of smell
 
Phyllis A 10-27     back on board again
 
Jan P 10-27     questions about weight gain, Coreg, vision & more
 
Jan P's 10-27 reply to MaryAnn H's 10-21     a-fib and PVCs with heart failure
 
MaryAnn H 10-27     seek info on "outflow type"
 
Cheryl C's 10-28 reply to Jan P's 10-27     weight gain, Coreg, vision
 
Jon's 10-28 reply to Jan P's 10-27     vision
 
Nancy S' 10-28 reply to Karen S' 10-11     Coreg, nausea, weight loss
 
Karen S' 10-29 reply to Nancy S' 10-28     Coreg, nausea, smells
 
Jon's 10-29 reply to Karen S' 10-29     beta-blockers, smells and baggies
 
Tom S' 10-29 reply to Jon's 10-28     vision disturbances with heart failure
 
Jan P's 10-29 reply to Jon's 10-28     vision disturbances with heart failure
 
Roger G 10-30     getting used to Coreg takes time
 
Jim T 10-30     hearing noises
 
Sharon L 10-30     vision wigglies
 


Jon, October 16, 2005 - Hi everyone, Getting used to my latest meds change has been a lot tougher than I thought. I think I'm stable enough now to sit in front of the pooter every day again now, though. Jon.


Valerie R, October 16, 2005 - Hi everyone, I'm still around but I really haven't had anything to say. This time, it's to share something with you about jacuzzis and hot tubs - we should not be in them with CHF. My doctor, who is very cautious with me now, said one minute max if I want to try them. They evidently dilate the blood vessels or some such and he said I could pass out and not get up. Understand, I feel great but have an EF of 10% and severe cardiomyopathy so some of you might be able to stay in longer. I wonder what this means about a hot bath. vgrogers@aol.com
 
Jon's note: This may be largely dependent on your individual tendency to have quick blood pressure changes.


Roger H's October 16 reply to Jim M's October 12, 2005 - Hi Jim, When I started going to my present cardiologist about two years ago, he put me on 5 mg folic acid (prescription) and testosterone (0.3ml twice a day, which I have to get at a compounding pharmacy 40 miles away and have to let them know 72 hours in advance of needing a refill). I have lowered the homocysteine levels and upped the testosterone level. My doc says I'm doing great! Also, I take Coreg and Cozaar and Carnitor and supplements. Along with all this, I take Chemet, a heavy metal detox 3 times a week. rkharmony@highstream.net


Joy, October 17, 2005 - Hi, I am attempting to return to work again. I am starting out slowly 8 to 16 hours per week compiling data from patient charts. I have not worked since pulmonary edema and my diagnosis of cardiomyopathy in 2001. My EF at that time was 15%. My last echo showed my EF at somewhere between 30 and 35%. I am a registered nurse and I really do miss my job.
     Yes, it was very stressful being a nurse manager of several units including ICU, Med-Surg, OB and rehab floor; and working some of these units when staff just wasn't available. I know I couldn't jump back into my work field full time and do a good job. At this time I am not up to the long ambulance rides juggling IV equipment, and stressful events that go along with trauma, cardiac events and other such things. However,I feel blessed that I have been given the opportunity to find out if I can work 8 to 16 hours a week even if it doesn't involve hands on with direct patient care.
     My cardio doc is against my returning to work but my internal medicine doc is all for it. The main reason for this post is regarding the Social Security benefits I am currently receiving. Having spoken with an agent from local SSA offices, she informed me that I have a 9-month trial to return to work period. During this time I am not limited to the number of hours that I can work or the income amount. After 9 months if I continue to work at beyond a monthly income of $860 (2006 - projected) my benefits will stop. These benfits can be restarted at any time my monthly income falls below $860 within a 36-month period.
     I don't have to fill out the paperwork that was required with initial application. After 36 months then the process would have to start from scratch with the application and doctor's findings, etc. Of course I am a little nervous about returning to work but at the same time, elated. I sure am not getting younger. Has anyone had experience of this kind of 9 month trial period? Does anyone know if there is a significant difference between SSA disability at age 62 years and regular SSA benefits? Your prayers are greatly appreciated for a successful return to work. Thank you. Joy. pjkachel@aol.com


Raymond A, October 17, 2005 - Hello, Has anyone here had any success improving their CHF with nutrients such as D-Ribose, CoQ10 and L-Carnitine? I have a web site which lists some alternative treatments currently not offered here in the way of nutrients. My site could be used as a compliment to Jon's site. After all, two heads are better than one. My site is www.reversecardiomyopathy.com. Raymond A. reverse.cardiomyopathy@gmail.com.


Roger G, October 17, 2005 - Hi All, Here is a neat CNN article that has some great graphics of the heart and explains a little about some of the types of heart scans: www.time.com/time/magazine/article/0,9171,1099713,00.html?cnn=yes rogergthree@earthlink.net


Jon, October 18, 2005 - Hi everyone, As you know, Norvasc is the only calcium channel blocker safe for people with heart failure to take. The FDA has approved a generic form now (amolidipine) although it has not yet come to market. Soon. Jon.


Marty C, October 17, 2005 - Friends, I just read one of the most eloquent statements Jon has written on this site, chfpatients.com/rel/spirituality.htm. It was awhile back and I am moved to encourage others to read it. As gruff as he may sound from time to time, let's all remember that Jon bears the same burdens as each of us with this illness, not to mention the financial burden of the site. Today I am sending some money in addition to my monthly contribution, since I sold something on E-bay. God is using you, Jon. The page I am talking about should be on the front page of your site. It makes me think of Proverbs 25:11, which says, "A word fitly spoken is like apples of gold in pictures of silver." God bless each of you. Marty (Nah 1:7) Padre45@aol.com
 
Jon's note: That page resulted when a very large medical group offered to partner with me in a substantial way if I removed the Christian stuff from my pages. Yeah, right. See Psalm 127:1.


Donna H, October 19, 2005 - Hi everyone, Does anyone else know a sensitivity to smells when they start going into heart failure? This happened to my husband last year when he was very ill. Actually it isn't as much a sensitivity to smells as it is that he notices smells that aren't there. For instance, last week after coming home from the hospital, he keeps smelling pancakes and syrup even though we haven't had either one in our home. herdrich@grm.net


Jack D's October 19 reply to Donna H's October 19, 2005 - Hi Donna, I'm irritated by smells all the time. Yep, I'm extremely sensitive to smells. I can smell things that other people can't. I was having problems smelling food and it was usually the sweet kind of stuff like pancakes. It turns out that there are lots of things around the house that produce smells that are either offensive or hunger-producing and women usually don't notice them because they are the ones who are causing these smells with perfume, cologne, scented candles (even if they aren't burning), shampoos, soaps, lotions, laundry products, kitchen products.
     Believe me, the stuff producing the smells are all over the house. I don't know if it is the sickness or the meds that heighten the sense of smell but the scents are all there. It would be wonderful if there were no perfumed or scented junk in the house and the only smells came from food or nature as it should be. But we are trapped in a world of perfumery. maddjak@hotmail.com


Tony M's October 19 reply to Donna H's October 19, 2005 - Hi, Thats one of the first side effects I had and still have to a lesser degree. I couldn't smell anything at all a few months after being diagnosed with cardiomyopathy. I couldn't tell the difference in the smell of gasoline versus dead fish. I knew I could smell something but couldn't pinpoint it was I was smelling.
     I went through some tests and they said without going deep in my pockets with more tests they came to this decision. Either I had a viral attack and it also took out my smell sensors, or my heart medicines caused it. I now a couple of years later can smell food cooking and tell some of the time what I smell or sometimes I can't tell you if my life depended on it what it is I smell.
     I too smell other odd things that aren't there like your husband. I hope this helps you understand but your letter is the first one I have found that is like myself in the losing or confusion of smell. It is helpful when you go to the airport in Atlanta and can't smell the long-traveled groups of foreign people who sometimes have to wait to get another flight. Thanx, Tony M. ynotmyrick@yahoo.com


Tom S' October 19 reply to Donna H's October 19, 2005 - Hi Donna, Only when I have a cannula stuck up my nose, which seems like 24/7 now. Otherwise it is too darned good, especially after chili night at the our house. bigheart@muchomail.com


Lori K, October 19, 2005 - Hi everyone, I have not posted in awhile but I wanted everyone to know that after 5 years of being at an EF of 38 to 45%, my doc switched me from Zebeta to Coreg a year ago. I am on 12.5mg BID and holding due to asthma. I just had my MUGA and echo, and my EF was a shocking 69%, with my MUGA at 70%. Switching to Coreg has not been easy for me (fatigue, weight gain, insomnia) but my results are promising. My LV size is up to 5.4cm from 4.9 and the doc said he will monitor that.
     Like you Jon, I have been down and out with terrible degenerative disc problems in my neck. Five bulging discs and one herniated, but no compression. Let me know how you do with your treatment, I am supposed to go in for an epidural steroid injection into my neck - Gasp. It sounds awful. To everyone out there, when you hear the stats like 50% mortality in 5 years for CM, don't let it get to you. Just keep on truckin'. Jon, feel good and God bless! Lori. thegoof86d@aol.com
 
Jon's note: I've had the procedure you're having done and I can say it depends on the skill and experience of the doctor doing it. If it is done well and works well, it can give a lot of relief, at least for awhile.


Lowell P, October 19, 2005 - Hi Jon, I had a review of my echo yesterday and was advised that my EF is now between 35 and 40%. My Left ventricle is enlarged to about 6.1 cm. It was noted as mild enlargement. I have also increased my Coreg to 25 mg and 12-1/2 mg per day. As I said earlier I was only taking 25 mg once per day. I can really feel the fatigue since upping the coreg and adding Avapro. Do I really have less energy or is it just reflecting my heart slowing down? Would I qualify with Medicare for an internal defibrillator with an EF of 35 to 40%? My BNP has gone down a bit also, to about 650, which is still high but better. My creatinine result is 1.6. Hope you're doing well, Jon. Lowell. Lpepper3m@aol.com


Jon's October 19 reply to Lowell P's October 19, 2005 - Hi Lowell, I saw a physical therapist today, and I'll see my PCP tomorrow, then my chiropractor the day after that. I have more energy and better mood from the steroids and we may raise the dose tomorrow to see if they can improve me further.
     It's pretty normal to partially decompensate when raising Coreg dose, especially if adding another drug that lowers blood pressure. This should improve slowly but steadily as your body adjusts to the different dose.
     I don't know if you would qualify for ICD unless you have another risk factor as well. However, you might qualify for a BiV pacemaker if your test results place you in the right patient group. Talk to your doctor about that one. Jon.


MaryAnn H, October 21, 2005 - Hi, Can anyone tell me when PVCs or PACs are dangerous? My son had them along with dilated cardiomyopathy. His EF has gone from 15% to 55% in two years. Cleveland Clinic EP doctors told me not to worry about PVCs since his EF is normal. When first diagnosed with DCM, he was getting about 25,000 a day. After a trial of 8 months with amiodarone they went down to about 2000 a day. He has been off it for 3 months and had a Holter monitor put on today and we will find out the results in about a week. I can't seem to stop worrying about the PVCs even though his EF is normal. Any info would be appreciated. mahall1958@hotmail.com


Chrystal H, October 21, 2005 - Hello, A friend of mine went through a lot a few months back. His doctors now tell him that he is dying due to heart failure. His heart and body are getting weaker by the day. He has basically no funds for a transplant, and even if he had one it would have to be a child's heart because he is so small. His time is limited, and any information you could give me would be greatly appreciated. Thank you. chrysoddity@aol.com


MaryAnn H, October 22, 2005 - Hi, Can anyone tell me what questions I should ask when my son's doctor calls me with the results of his Holter monitor. They usually tell me how many per day and if they are unifocal or multifocal, and the percentage he gets in a day but I am sure I should be asking other things, I just don't know what they are. He has PVCs and PACs and sometimes bigimeny. I would appreciate any input. mahall1958@hotmail.com


Donna H, October 22, 2005 - Hello everyone, Thanks for the replies about sense of smell. When I mentioned to my husband that other people have had trouble with their sense of smell and/or phantom smells, he told me he isn't smelling a phantom smell - it is just something no one else can smell! <lol> herdrich@grm.net


Sandy N's October 22 reply to Chrystal H's October 21, 2005 - Hi Chrystal, First of all your boyfriend needs to get a new doctor. I was told that 2 years ago by the first doctor I saw. I ran! My new doctor has helped me see that I'm dying yes, but not right now! I don't know what tests and treatment your friend is going through but from the way you tell the story, he needs to go find a heart failure specialist, and fast! Good luck to you both! bleuskiiisgrl@yahoo.com


Ben B's October 24 reply to MaryAnn H's October 22, 2005 - Hi MaryAnn, I would ask if he has any ventricular tachycardia or ventricular fibrillation. I might ask if it was sustained or non-sustained. Of course, it is going to be up to the EP doc to interpret the results and make a decision, and I think a lot of this is complicated. You might ask if he needs an EP study and why or why not. But say for example he has V-tach and they don't recommend an ICD or EP study, you could ask why they don't consider this stuff necessary.
     It seems to me that a lot of doctors these days don't recommend ICD's for the higher EF patients even with some arrythmias, because for higher EF patients I don't think the statistics support big benefits for ICDs. I have a history of millions of PVCs and some runs of v-tach, but when I had an EP study they didn't recommend an ICD. That was about seven years ago. bdbrinkman@juno.com


Jack D's October 24 reply to Donna H's October 22, 2005 - Hi Donna, Your husband is probably right. I've been harrassed so many times about smelling things that aren't there that I have started tracking them down and finding them. And yes, after I have pointed them out, other people can smell them when they get close enough! maddjak@hotmail.com


Tom S' October 24 reply to Donna H's October 22, 2005 - Hi Donna, To give you a serious answer to your original comments concerning smell, I noticed the biggest change in my sense of smell when I gave up cigarettes about 14 years ago. The transition from everything tasting like newspaper to the full range of flavors that I had literally forgotten was overpowering at times. The sense of smell is directly tied into the sense of taste, without one you can't have the other.
     The "first time" I smelled an orange, in many years for example, I could barely believe that is what an orange really smelled like. Smelling again also produced some suprises. Rice Krispies smelled like cow manure to me and stopped me from eating a cereal I once loved as a child. Everything smelled differantly from what I had rememebered.
     The only time I have difficulty in smelling since the onset of CHF has been when my meds cause my sinuses to fill. I usually take my oxygen nose cannula out when I eat - otherwise food tastes and smells as bland as when I was smoking. So I don't know if that covers your problems with smell, but yes I definitely have had problems with drugs causing such things as runny noses and fluid on the lungs, which altered my senses. bigheart@muchomail.com


Jacky B, October 24, 2005 - Good news! Recent echo results show my EF as 45% and that is up from 35% a year ago! Also, my BNP is 69 which is first time it has been below the magic 100 in three years. For the past two months I have been feeling really good. The only difference on the echo was fluid in the pericardium, I can only assume it was more than normal or it wouldn't have been mentioned as different. The NC did not seem too concerned as I have no pain and just said to go to my appointment next month unless I develop pain. I have no idea what this might mean. Any info is welcome. Jacky. jackymwb@earthlink.net


Cheryl C, October 24, 2005 - Hi everybody, Well, everyone says to fire your doctor if he won't take time to answer questions, try to be helpful, etc. Here's the other side of the coin for you. On Friday morning, I went down to San Luis Obispo to have my blood work done before my next cardiologist appointment. If you remember, I had to make an unforeseen visit a couple of weeks ago because I felt extra tired and short of breath. I (we) blamed it on the Coreg dosage (25 mg) and dropped me back to 12.5 mg.
     About 8:00 PM Saturday night, Dr Bocchiochio called to tell me that he had just picked up my labs and my potassium is too high. We wanted me to stop my spironolactone right away, since that caused potassium retention. Next week I get to return to the lab to have more blood work done so we can check it again. Now, I should have had a clue that something was wrong. I've been experiencing stomach cramps, diarrhea, fatigue, and cooooooold extremeties. Also, when the lab technician tried to draw blood, nothing came out until we hung my arm downwards. That has never happened before. My blood has always raced out!
     I'm getting kind of worried here, though. First I have to drop my Coreg back to 12.5 mg and now I can't take my spironolactone. The only thing I have left is 10 mg of benazepril. Aren't I going the wrong way on the medication trail, Jon, anybody? I know that 25 mg of spironolactone doesn't act as a diuretic, but it does help prolong life (I can't remember how). Someone had to eat "dirt" or something similar in a past post to remove potassium, I think. If that's correct, could that person e-mail me? I can't remember where I saw that post! Thanks for your help! cocojo86@yahoo.com
 
Jon's note: I think Jack's been through that deal before.


Jon's October 24 reply to Cheryl C's October 24, 2005 - Hi Cheryl, The only right way to go with meds is the way that works for you. Everything else is a guideline, not a commandment. Skewed blood potassium is a very serious matter and if you need to drop a med to correct it, absolutely do it without hesitation. Be sure you are getting bloodwork often enough throughout this period of getting it right, at least once a week, preferably twice a week until your blood levels are okay for certain.
     Trials do show that a Coreg dose of 12.5 mg does give definite benefit, just not as much as target dose. If I were in your shoes, I would be looking to increase my ACE inhibitor dose a bit more toward target dose at this point. That might give you more long-term benefit than the spironolactone, which is only recommended for class 3 or class 4 CHFers, while ACE inhibitors help all CHFers.
     You don't say if you take diuretics. If you don't take a loop diuretic, you may not be able to take spironolactone. I do wonder if your symptoms may not have been from Coreg in the first place but rather from electrolyte imbalance. It could be that once you get your potassium level sorted out, you can slowly increase your Coreg dose again; just a possibility.
     Also, as I have been painfully reminded by my own situation, other health problems can mimic heart failure problems, so it never hurts to see your regular doctor and see if "symptoms" could be caused by something other than your heart. Jon.


Joe G, October 24, 2005 - Hello, I was taking warfarin (the generic of Coumadin) made by Taro Drug Company. My supplier switched companies and now uses Barr Labs. When I was using Taro's product my Pro-Time was 2.2. Now that I am on Barr Lab's product my last two blood tests showed a PT of 1.7. My diet has not changed since taking the new drug. After my first blood test on the new drug the doctor increased the dosage (10 mg a day) but my PT actually went down just a bit after the second blood test. Could one generic pill be so different from another? Has anyone else had this problem? nutleyjoe@verizon.net


Mary Anne M, October 24, 2005 - Hi, My cardiologist started me on 25 mg spironolactone on the day I had my ICD implanted. It's been a month now and I am still having a lot of sweating and bowel spasms. I am going to call the doctor and talk about going off this drug. It's another of those "wonderful" drugs for CHF, but what about feeling good? I'd rather live for ten years feeling relatively well than for 15 feeling rotten. Has anyone else had experiences with quitting this drug? Thanks for your help. mameredith@nauticom.net
 
Jon's note: I quit it years ago with no problems. I stopped it due to side effects.


Tom S' October 25 reply to Joe G's October 24, 2005 - Hi Joe, My cardiologist prescribed the brand name Coumadin when I was getting the script filled in a private pharmacy, but then I worked out an arrangement with the Veterans' Administration to obtained my blood thinner through their pharmacy. The VA is big on generics so I started receiving warfarin instead of Coumadin and actually have noticed that my PT remains in the mid two's to three's on 10 mg daily. Recently it topped out at 3.8 and the local clinic that gets the protime test results decreased the dose to 7.5 twice a week. We shall see if that bumps it back a little. bigheart@muchomail.com


Beckie H, October 25, 2005 - Hi there, I saw my cardiologist yesterday and my EF is up to 45 from 20% and I am feeling much better. I had sinus surgery 9/21. Ever since then my toleration of my Coreg dose (which was 25mg BID) has not been good. I was dizzy all the time and passed out twice. I went to the ER and my blood pressure was 60/30. They cut out My 10mg BID Altace, and cut down my Coreg dose to 18.75 mg.
     I have done super on these doses, feeling 100% better than I did on higher doses. My blood pressure had been anywhere from 110/60 to 90/50 on the new dose but my pulse is always high at 90 to 110. My pulse was that high on full dose also. Well, the cardiologist raised my Coreg to full dose at bedtime and 18.75 mg in the morning and put me on Altace 5mg BID. Today my blood pressure has been running 83/47 and 80/46. I am dizzy again. Isn't there anything else to get my pulse down? Thanks, Beckie. rebekah.hanks@bsd.k12.de.us
 
Jon's note: Toprol-XL is better for anyone with low blood pressure problems. That's because it is a straight beta-blocker, while Coreg is also an alpha-blocker which further lowers blood pressure.


Cheryl C's October 25 reply to Jon's October 24, 2005 - Hi Jon, Thanks for the quick answer. I do think that my problem may have been the potassium and not the Coreg. It seems that unknowingly I had eaten too many things that are high in potassium at the same time, or close together. When I did a search on high potassium foods, I was amazed at how dumb I've been. It just goes to show you how thin a line we walk sometimes. I don't take a diuretic at all now. I quit the Lasix after one month out of the hospital and have been fine without it just by limited liquid intake and low sodium foods. The doctor told me 2000 mg sodium a day, but I actually eat about 1000 to 1500 mg instead and feel better for it.
     I've really been watching the potassium in my foods since Saturday night and feel better already. I would classify myself as a class 2 CHFer. I've been walking our acreage and can go for a very long time, except uphill. I do get short of breath walking uphill. All normal daily activities are no strain. I work full time, a 40 hour a week office job at the winery, but 2 weekends ago we had a wine festival and I worked an extra 5 hours on my feet in the tasting room running the cash register. I've also been helping my husband harvest our grapes and just started helping harvest our pistachios. Neither job requires heavy lifting, but reaching, cutting/picking, and standing for long periods along with bending and stooping.
     I do get tired, but just for the moment, not for days. I also fit in cleaning the house and cooking. Oh and I've also been doing exercises with 5 pound hand weights to build up some upper body strength again. I'm going to talk to my doctor next week at my appointment about increasing the ACE inhibitor and had already decided to try increasing the Coreg again. One thing at a time though! Thanks for your suggestions. Being still pretty new at this, I can use the help from someone more experienced. Cheryl. sosojo86@yahoo.com
 
Jon's note: I am surprised you were on spironolactone. It is meant for class 3 to class 4 CHFers and is well known to raise potassium level so people who do not take a loop diuretic are not usually given the drug.


Rick W's October 25 reply to Roger G's October 9, 2005 - Hi Jon! I laughed when I read Roger's post. I wasn't planning a space trip with my St Jude V-240 that I have had for three years. My EP doc's office just called. I was scheduled to see Sue, my technician, on November 16th for a routine inquiry. That appointment has now been changed from the technician to a surgeon. My device has been recalled! For a bit more information see http://biz.yahoo.com/bw/051007/75217.html?.v=1. Keep up the good work! Rick. rjw7798@aol.com


Cheryl C's October 25 reply to Donna H's October 22, 2005 - Hi Donna and everyone, I just wanted to weigh in on the "smell" issue. Since I quit smoking 8 months ago, I've found that my sense of smell is much better than before, however some things don't smell the same as before. The odor may be more or less intense, or just totally different. Cooking bacon (my husband's!) now turns my stomach and I used to think it smelled good. I do smell phantom odors that no one else can smell. My favorites are cigarette smoke and whiskey. I did smoke, but hated the smell of burning cigarettes and I've never been a whiskey drinker. My husband never smells these odors when I do. I blame them on my deceased father-in-law's visits to us. :-) cocojo86@yahoo.com


Phyllis A, October 27, 2005 - Hi everyone, I used to post here over a year ago. I have CHF and asthma, and I was diagnosed with asthma in 1996 and CHF in 1997, after chemo and radiation therapies for breast cancer with mastectomy. I am doing pretty good now. I will be on board again. Thanks and God bless us all. Philaphyllis@aol.com


Jan P, October 27, 2005 - Hello, After reading your posts I have decided to join you. I was diagnosed with cardiomyopathy 8 months ago. I am 53, and I lost my mother to cardiomyopathy when she was 54 years old. My EF has increased since I started Coreg 7 months ago. I am so fortunate; she didn't have access to medications like this.
     I am a college professor and I had to quit working several weeks ago. The stress was too much and the fatigue was overwhelming. I couldn't make it through a full day. I also have fibromyalgia, neuropathy, double vision, and arthritis in my neck, knees, and hands. I had brain surgery twice in the 1980s and now I struggle with balance and coordination. I went to a Mayo Clinic and they believe that all of my problems are related to some type of familial nerve disease that affects individual family members in different ways.
     I have gained weight since I started Coreg. Has this happened to anyone else? Do you have double vision when working on the computer or when reading for any length of time? My faith is what keeps me going. prof_jantu@yahoo.com


Jan P's October 27 reply to MaryAnn H's October 21, 2005 - Hi MaryAnn, My cardiologist seems unconcerned about my PVCs. She acts as though they are "par for the course." I also have some problems with valves, so that may be why she isn't addressing the PVCs. My internist said that we "will deal with them" after my heart is more stabilized. I have all types of irregular beats, especially when I am fatigued. My cardiologists just says "uh huh." I know there are times that I have some fibrillation as well. My mother lived the last 3 years of her life in constant atrial fibrillation. They couldn't shock her out of it. That was 20 years ago. prof_jantu@yahoo.com


MaryAnn H, October 27, 2005 - Hi everyone, Reading my son's last Holter monitor report, it said "outflow type." I can't seem to find much on that. I seem to find outflow obstruction but that word was never used. Also, the one article I did find on outflow type mentioned the right ventricle. I always thought his problem had to do with his left ventricle. I would appreciate any information. mahall1958@hotmail.comJon.


Cheryl C's October 28 reply to Jan P's October 27, 2005 - Hi Jan, Yes, I have also had weight gain that must be due in part to Coreg. Part of it was needed but I'm ready to stop gaining now, and I'm not sure that's going to happen. ;-) I'm still working full-time at an office job. Almost all my work is on the computer and I've noticed that I need to blink frequently and refocus my eyes. It's not exactly double vision, but visual disturbances, I guess. Good luck to you. Cheryl C. cocojo86@yahoo.com


Jon's October 28 reply to Jan P's October 27, 2005 - Hi Jan, I'm glad you brought up visual disturbances. This has been a problem for me for a long time but only after getting heart failure. I don't have double vision but I have real trouble focusing and staying visually focused, with no one distance being more or less a problem than any other. It's very frustrating. Jon.


Nancy S' October 28 reply to Karen S' October 11, 2005 - Hi Karen, I'm sorry it has taken me so long to respond to your message. I don't check in here nearly as much as I should sometimes. I wanted to say that the Coreg may be what is making you nauseaus. I am on a very small dose of 6.25 mg twice a day due to low blood pressure but my cardio specialist decided to increase it to 12.5 mg twice a day a few months ago. I started to feel sick and lost some weight, not that I don't need to lose very much weight! - but not really that way.
     On my next visit I asked my doctor if that is what could be causing the ill feeling and he said it was very possible since people react to drugs differently. Anyway, he reduced it back down and the next day the sick feeling was gone. You may want to check this out with your doctor but don't just do it yourself, please. Good luck and I hope you feel better soon. Nancy. ns1@alltel.net


Karen S' October 29 reply to Nancy S' October 28, 2005 - Hi Nancy, Thank you for the response. I am losing weight every week due to lack of appetite and nausea. The doc just upped my Coreg dose to 1/2 of a 3.125 mg tab morning and night. The Coreg affects my blood pressure too. I think part of the problem may be what others have been discussing about smell. If I open the fridgy and smells anything weird, I lose my appetite. So, in an effort to combat the smells of leftovers, garlic or whatever, I put everything I could in ziplock bags! I have a fridgy full of ziplocks. <lol> My daughter thinks I am nuts, but whatever works! :-) cowgirl94952@yahoo.com


Jon's October 29 reply to Karen S' October 29, 2005 - Hi Karen and everybody, I can't stress enough to people who have problems with low blood pressure on Coreg - Try Toprol-XL! It is an FDA-approved beta-blocker and it works. Please note that I asked my CHF doc to switch me from Coreg to Toprol-XL and he had no problems at all doing so, so I take Toprol-XL myself. I went straight from target dose of Coreg to target dose of Toprol-XL to maintain beta-blockade in my body and had no side effects. My blood pressure is better now.
     Hey Karen, regarding ZipLock baggies, try the freezer kind - they hold in smell better. I use 2 of them on roast garlic to prevent my fridge from turning into a garlic locker. Jon.


Tom S' October 29 reply to Jon's October 28, 2005 - Hi Jon and everyone, I too have vision problems, the worst of which was described by my cardiologist being a migraine headache of the eye, which has no pain associated with it, but rather is a series of regular flickering patterns that eventually take up the whole field of vision then go away.
     However about a year ago one of the flickering thingies took up residence in my field of vision and actually causes a warping of of the focus immediately around the edges of the swirling object. It is small but right at the ocular center of vision so can be very annoying at times. I have to guess at what I am writing on the computer because I don't really have a clear view of it at all. That is primarily due to a soft focus that no amount of corrective lenses seems to change.
     After I was in the hospital and on oxygen for 10 days my vision was sharp as a tack and the swirly thing was gone. Despite the fact I am on oxygen at home, pretty much 24/7 my vision has returned to the fuzzy state, but now the pains in my legs and arms, and nausous feelings along with cold feet, are pretty much gone. I think I would rather see clearly and have icicle feet. bigheart@muchomail.com


Jan P's October 29 reply to Jon's October 28, 2005 - Hi Jon, Thanks for responding about the vision problems. I'm not sure when my heart failure started, but the vision problems began about one year before I was diagnosed. I have an appointment to see a neuro-opthamologist in two weeks. He is the chair of the opthamology department at Indiana University Medical School. I'll let you know what he has to say. prof_jantu@yahoo.com


Roger G, October 30, 2005 - Hi All, I have been reading the last set of posts and have a few comments for your consideration on heart rate, blood pressure, and Coreg. These are only my uneducated thoughts but come from 8 years of experience with CHF and Coreg. Coreg can be quite upsetting to the stomach and your entire system until you get used to it, but the idea of lowering heart rate and blood pressure is a great one. It allows the heart to rest, which allows us to live longer. It took me about six months to get adjusted to Coreg and perhaps another year or two before I started to gain back some of the weight I had lost, and gain a few extra pounds.
     Work with your doctors to be sure Coreg is right for you and remember it may take quite some time to get adjusted to it. Best wishes to all. Jon, thanks for the site. As soon as we get through paying for my ICD, I will try to get you another donation. rogergthree@earhtlink.net


Jim T, October 30, 2005 - Hi Everybody, I don't know if this is caused by CHF or not, but about a year ago I started to hear all kinds of noise in my head. I have seen three doctors and none of them can do any good for me. Over the last six months it has gotten a lot worse! It is even hard for me to sleep. Has anybody else had this problem? I sure would like to get it stopped. It is not my inner ear or my outer ear, but it is driving me nuts. The only way I can stop it, is to play loud music to over come it but that gets old fast! The doctor says it is in my brain and there is nothing that can be done, but any help would be wecome! Thanks a lot, Jim T. jcrichtontaylor@voyager.net


Sharon L, October 30, 2005 - Hi everyone, I have had several instances of that phenomenon - vision wigglies. The first was the day I had my angiogram in March of 2003. I had a bit of a bleed and after they got that taken care of and left me alone with a warm blanket, I had that experience. It happened several times after that but farther apart each time. There has been no occurrence in about 2 years. My regular doctor was baffled. I am thinking it is either oxygen related or blood pressure. It hasn't happened since I've had my CPAP. Of course, life is much better after getting the CPAP - better sleep, I feel better during the day, and have fewer PVCs. lyons@sasktel.net


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 Jon C.

Talk to Jon Site Index