The paperwork never ends The Archives
September 1-15, 2001 Archive Index CHFpatients.com

Fred D's 9-1 reply to Jon's 8-30     update - need angioplasty
 
Tracey C 9-1     update, has anyone else gotten an ulcer?
 
Ben B's 9-3 reply to Fred D's 9-3     are you still in line for disability?
 
Herbert L's 9-3 reply to Henry S' 8-31     CHF treatment question & more
 
Amelia's 9-3 reply to Tracey C's 9-1     second opinions & more
 
Mary's 9-3 reply to Ben B's 8-24     left axis deviation question & more
 
Loretta D's 9-3 reply to Autumn's 8-31     CPAP and sleep apnea
 
Pat M 9-3     PCP diagnostics questionable - anyone else?
 
Lisa 9-3     Disability appeal/denial questions
 
Lisa Keenan's 9-3 reply to Pat M's 9-3     COPD and CHF, Disability
 
Jon's 9-3 reply to Pat M's 9-3     play it safe
 
Karen D's 9-3 reply to Joe L's 8-30     Orlando CHF docs
 
Sharon P's 9-4 reply to Tracey C's 9-1     stomach problems
 
Henry S' 9-4 reply to Herbert L's 9-3     as needed meds, doctors, & more
 
Walter K's 9-4 reply to Herbert L's 9-3     as needed Lasix
 
Jan 9-5     seek CHF doc in Boston area & pericarditis question
 
Lee B 9-5     seek experiences of lightheadedness, mental fuzziness
 
Pat M 9-5     thanks for advice, breathing better
 
Marsha H's 9-5 reply to Tracey C's 9-1     ulcers & antibiotics & more
 
Donna 9-5     seek requirements for disabled parking placard
 
Jon's 9-5 reply to Donna's 9-5     set by each state
 
Wendy B's 9-5 reply to Lee B's 9-5     mental fuzziness
 
Autumn 9-5     got lucky with CPAP machine, & more
 
Ann's 9-6 reply to Jan's 9-5     Boston CHF docs
 
Stephanie's 9-6 reply to Lee B's 9-5     lightheadedness, mental fuzziness
 
Joe S' 9-6 reply to Lee B's 9-5     lightheadedness, mental fuzziness
 
Jeanette W's 9-6 reply to Donna's 9-5     handicapped parking placards
 
Jon's 9-6 reply to Jeanette W's 9-6     handicapped parking placards
 
Walter K's 9-6 reply to Lee B's 9-5     lightheadedness, mental fuzziness
 
Kathleen T 9-6     seeking CoQ10 effectivness proof
 
Jim 9-6     update, has anyone else had this?
 
Rod B 9-6     L-carnitine & propionyl-L-carnitine question
 
Frank Smith 9-7     update, seek carotid procedure info
 
Craig's 9-7 reply to Tracey C's 9-1     Coreg-related stomach problems
 
Dorothy Powell's 9-7 reply to Jan's 9-5     pericarditis experience
 
Davida S' 9-7 reply to Kathleen T's 9-6     CoQ10 experience
 
Tracey C 9-8     just venting a bit
 
Bill D's 9-8 reply to Frank Smith's 9-7     carotid endarterectomy
 
Jon 9-8     I would appreciate your input
 
Ginger's 9-8 reply to Frank Smith's 9-7     carotid endarterectomy
 
Jamie W 9-10     PPCM questions and more
 
Frank Smith 9-10     thanks to Bill D & Ginger
 
Jeanette W's 9-10 reply to Jon's 9-6     handicapped parking placards
 
Jon's 9-10 reply to Jeanette W's 9-10     legal agreements - watch out!
 
Bob N's 9-10 reply to Kathleen T's 9-6     CoQ10 and heart failure improvement
 
Maree 9-10     intro, what do I ask the cardiologist?
 
Ann B's 9-10 reply to Jamie W's 9-10     digoxin toxicity symptoms
 
Lisa K's 9-10 reply to Jon's 9-10     signing authorizations
 
Jon 9-11     question for all
 
Joe S 9-12     question about diabetes and heart failure symptoms
 
Jon 9-12     page updates
 
John C's 9-12 reply to Joe S' 9-12     see a doctor immediately
 
Jeanette W's 9-12 reply to Joe S' 9-12     CHF, diabetes, sunshine & more
 
Ginger's 9-12 reply to Joe S' 9-12     CHF & diabetes, plus a question about leg pain
 
Joanne K's 9-12 reply to Joe S' 9-12     see a doctor immediately
 
Carol W 9-13     anemia questions
 
Jon's 9-13 reply to Carol W's 9-13     anemia articles
 
Jon 9-13     page update
 
Joe S' 9-13 reply to John C's 9-12     blood sugars, CHF meds & these symptoms
 
Jamie 9-13     seek CHF doc in Georgia & questions
 
Tracey C 9-14     echo, update, question
 
John Len's 9-14 reply to Loretta's 9-3     sleep apnea web site
 
Jon 9-14     if you're having trouble posting,...
 
John C's 9-14 reply to Joe S' 9-13     diabetes


Fred D's September 1 reply to Jon's August 30, 2001 - Hi, The Lord works in mysterious ways. Yesterday I had a thallium stress test. When the doc came in to discuss the findings, he appeared very concerned and advised me that the disability was moot at this time due to the fact that I needed angioplasty. He advised that he had another doc look at the test results and they both concurred that I needed angioplasty. I asked if it needed to be done immediately and he said that I should not wait too long. I had him send the results of the test to my cardiologist in Wichita and will discuss this with him next week. I had this same test done less than a year ago and there was nothing to indicate the need for angioplasty. I guess there was a reason for me having this test done after all. Perhaps this little guy from India saved my life. There has been nothing in my routine exams to indicate any problem and this would have gone unnoticed until the "big one" that probably would have been the last. deal@midusa.net
 
Jon's note: Count your blessings and hurry up and talk to your own doc!


Tracey C, September 1, 2001 - Hi everyone, I spent Saturday in the ER after developing pressure and pain in my chest during a walk. They asked if I'd had a cath and when I said I had, with no blockages, the on-call cardiologist said then there's zero chance it's your heart. To their credit they still gave me all the tests: blood work, EKG, and chest x-ray but all were normal. They then gave me nitro which didn't help, followed by a GI cocktail which did help a bit. I have known I have a hiatel hernia but they now think I have an ulcer. With the change from high sodium to low came ultra spicy meals. I guess I need to cut back a bit. It's really amazing though, how similiar stomach and heart symptoms are. I also wonder if maybe Coreg gave me the ulcer since it was always really hard on my stomach. Has anyone else been diagnosed with an ulcer? Have a great holiday. 2tcollins@home.com


Ben B's September 3 reply to Fred D's September 1, 2001 - Hi, I'm just curious what this company doctor meant by "the disability is moot." Does that mean you're approved? Regardless of whether you need the angioplasty or not, I never knew company doctors to be so interested in new diagnoses. As far as I know, a thallium stress test shows blood flow to areas of the heart, not necessarily exact blockages. Maybe this doctor is thinking if he clears a blockage you'll be 100% better and take them off the hook. Of course this would be great, but in the meantime how about an approval? I guess what I'm saying is you should see your doc, get an angiogram and an angioplasty if you need one but still be approved for the disablility in the meantime. Unless you're ready to head back to work. I'm sure the money is not moot to you, whether you have a blockage or not. bdbrinkman@juno.com


Herbert L's September 3 reply to Henry S' August 31, 2001 - Hi Henry, I saw your post and had to ask about your Lasix. You said that you use it as needed. What do you mean by that? My doctor says I need to use Lasix only if I gain 2 to 3 pounds over what I weighed the morning before. As I read what most others write in their posts, it looks as if it is a daily medication. My doctor is not using Lasix as a shortness of breath cure. He uses the "get to ideal body weight, walk daily, and keep the sodium intake below 2000mg, and rest if I feel like I might be overdoing it" routine as a cure or help for shortness of breath. I thought maybe we had the same doctor or they went to the same school. Me, I live in southern Oregon near Rogue River.
     Since reading these posts for about 2 years I wondered if maybe my doctor was doing things his own way, rather than by the book. That's why the question. lajoie@cpros.com


Amelia's September 3 reply to Tracey C's September 1, 2001 - Hi Tracey, It seems strange that an ulcer or hernia would cause chest pain and pressure; Heartburn and other gastric problems can be similar. My mom and brother have ulcers and hernias but have never complained of chest pain when walking. Maybe I am a worry-wart but I would seek another cardiologist and an echo. One cardiologist told me that a clear coronary artery does not mean it won't block up later, and it can happen in a short time. Best to all, Amelia. amelias@erols.com


Mary's September 3 reply to Ben B's August 24, 2001 - Hello to all, I just stumbled across this message board while doing a subject search on "left axis deviation." During a routine EKG for some outpatient surgery I needed (and had), the results came back abnormal with this "left axis deviation, with hemiblock." This scared the dickens out of me. My internist told me my heart was "tipped" and I could go ahead with the surgery that I was to have general anesthesia. Obviously, I woke up. ;-) Now I'm concerned enough to start asking questions.
     Several years ago, in the 1980s, I was diagnosed as having fibromyalgia. This was after many tests to rule out stroke, brain tumor (which I prayed I had because they could fix that), etc,... I have all the symptoms but really feel like it may be a catch-all diagnosis. I'm 58 years old, female, overweight, sedentary, fatigued, have bad eating habits, and am sometimes depressed. I'm on Lipitor for high cholesterol and clonazapam, which in the beginning was for panic attacks/sleeping habits and now I can't sleep without them. Reading back over this I sound like a hypochondriac! I guess I need to hear about this "left axis deviation" in plain language and also would appreciate any suggestions from you out there! Thanks in advance. mat@ffni.com


Loretta D's September 3 reply to Autumn's August 31, 2001 - Hi Autumn, I understand your feeling of not being treated as soon as you should have, and of problems with the insurance company. If your new doctor stresses to the insurance company how important it is to treat your apnea, you should get a better response. I have CHF and apnea as well. The CPAP equipment needs to be set up for your specific needs, so it is important you get the right stuff and follow directions for it to help you. You should also check out the following newsgroup if you have access. They are really nice people and know their stuff. alt.support.sleep-disorder Good luck. lorettad7@home.com


Pat M, September 3, 2001 - Hi, Thanks so much for this site and for all your imput. I came back from my vacation with swollen ankles up to my shin, SOB, and exausted. I went for a previously scheduled blood test so I mentioned it to my PCP while I was there. He took a chest x-ray in his office, had a nurse have me blow into a tube attached to a hand held computer and then told me I also have COPD, and that is why I was SOB. He prescribed 3 different inhalers to use 3 times per day and cut out my metropolol. He said to see him next week and if the SOB is gone then I had asthma or bronchitis.
     Because of keeping up with this site I believed I was decompensating and at least had an inkling that fluid was the culprit. Shouldn't that have been a red flag for the doctor? I reminded him of my swollen ankles,so he told me to increase my Lasix to 80mg for a few days. To make a long story short, I didn't get the inhalers yet but doubling my Lasix has helped and I can see my ankle bones for the first time in 3 months. Has this happened to anyone else with their PCP? Thanks folks and peace, Pat M. pmarble@tellico.net


Lisa, September 3, 2001 - Hi Jon, I have noticed that others have had problems with filing for SSD. I had a question about this and was hoping you or someone could answer. I filed last year in August and was denied twice. I then appealed my case for the third time and hired an attorney. All my paperwork, along with a letter from my cardiologist stating that I was disabled and unable to go back to work, was submitted in June. I called to check on the status of my case last week and was told some upsetting news.
     They said I would not be able to see a judge for 9 to 12 months, probably sometime in April of next year. Also, she said that on the back pay, they would only go back as far as the time when the attorney appealed, not when I applied a year ago. This just does not sound correct or fair to me. I went ahead and wrote my Senator a letter this week. I do not know if this will help or if she will even read the letter. If you or anyone has any advice or can help me in any way on this, please let me know. God bless, Lisa. Johnlisa@the-i.net


Lisa Keenan's September 3 reply to Pat M's September 3, 2001 - Hi, The test your PCP gave you was designed to measure your lung function, which indicated that you have COPD, likely because you have a smoking history or someone close to you does. COPD and CHF can and do exist concomitantly and the treatment for one can make the treatment for another tricky. The symptoms mimic each other frequently, although COPD does not usually cause swelling. I would fill the prescriptions for the inhalers and see if their regular use makes you feel better.
     In terms of disability applications, SSA and private companies want more than a low EF. Very often you will need to provide stress tests, 6 minute walk tests, evidence of active failure via physical exam, and some very serious symptoms in order to qualify. I agree that anyone engaged in this process needs to engage a respected cardiologist knowledgeable in how to present your case and a lawyer well versed in the SSA bureaucracy. You will save yourself a lot of headaches by doing this sooner rather than later! lkeenan1@maine.rr.com


Jon's September 3 reply to Pat M's September 3, 2001 - Hi Pat, What Lisa says is true but I would strongly urge you to get a second opinion on the COPD diagnosis before using the inhalers. That second opinion should come, if at all possible, from a pulmonologist - a doctor specializing in disorders of the lungs. This is for the very reason Lisa stated: the 2 illnesses can mimic each other. A PCP may make a mistake either way. If you do not have COPD, taking inhalers could be a big mistake. Just make sure, is all. Jon.


Karen D's September 3 reply to Joe L's August 30, 2001 - Hi Joe, We live in Kissimmee, just a little bit south of Orlando. My husband goes to Dr. Patrick Mathias of Cardiovascular Associates. There are 6 excellent doctors in the practice, although we prefer Dr. Mathias, and they have locations in Kissimmee and Orlando. The Kissimmee phone number is 407-846-0626 and the Orlando number is 407-297-1870.
     Before Bill Drummond moved away, he went to another excellent doctor in Orlando. Maybe he's already sent you the name. Good luck with your move to Orlando. We moved here 30 years ago from the Midwest and haven't ever regretted it! The Orlando area is great because you're no more than 1 1/2 to 2 hours away from either the ocean or the Gulf, and if you get away from the tourist traps, there's a lot of natural Florida still to be seen and enjoyed. Karen. bdeit@cfl.rr.com


Sharon P's September 4 reply to Tracey C's September 1, 2001 - Hi, You are not alone with regards to the upper GI pain. I suffer with the same problems too. All the tests indicate GERD. Last week I was awakened from a deep sleep instead of waking like you were. The only thing which kept me from going to the ER was that I had a doctor's appointment the next morning. The Prevacid has barely put a dent in the discomfort and I'm miserable. I also take Coreg but don't know if that is the cause. It could be any of the medications in my cabinet, I suppose. I'll give my stomach the 2 weeks the doctor recommended and then return if it hasn't cleared up. Blessings, Sharon P. sparker103@home.com


Henry S' September 4 reply to Herbert L's September 3, 2001 - Hi, Thanks for the reply. As needed Lasix is, as you said, if I gain weight. I saw the daily recommendation too and it makes more sense. I am on the space coast of Florida and on my second cardiologist. At the second visit with the new one, which lasted all of 10 seconds, I stopped him with questions as he headed for the door. His reply was, "Okay, lets do it by the book." Now I have increased my Coreg for the first time since February of 2001. I am learning to be a squeaky wheel, which is not my nature and not good for my already stressful life. Thanks again, Henry S. hagaralso@aol.com


Walter K's September 4 reply to Herbert L's September 3, 2001 - Hi, I am also on Lasix as needed. I was on 40mg daily and started having dizzy spells. My internist and my CHF specialist both thought I might be too dried out. The CHF doc cut my Lasix from 40 to 20mg daily, then to 20mg every other day. I still had some lightheaded spells. I was taken off Lasix completely by the CHF doc, who also cut my Toprol-XL from 100 to 50mg daily, although I don't know why the Toprol was cut. I have not had dizzy spells since. The CHF doc has told me to take Lasix "as needed" meaning to take some if I notice swelling or weight gain; So far, no problems. Apparently as needed is not uncommon. hknoth@magpage.com


Jan, September 5, 2001 - Hi, I am giving up on my state and ame now onto the next for a good doc! Can anyone recommend one in the Boston area? I know there are a lot there, but I would really appreciate any first hand knowledge of any great ones! Has anyone ever had pericarditis? I was just diagnosed with this and searched the site, to find only one person, and he had it for an entire year! Does anyone know much about it, or have you had it? Thanks, friends, Jan R. therowlnds@att.net


Lee B, September 5, 2001 - Hi, I'm having a lot of lightheadedness and fuzzy thinking. I wonder if any of you have the same problem. I take Lasix, paxil, tambocour, monopril, digoxin, celebrex, ativan, darvocet,and NitroQuick on a daily basis. My EF is 14%. I would appreciate anyone's thoughts on this. Thanks, Lee B. lebuth@cfl.rr.com


Pat M, September 5, 2001 - Hi, Thanks Lisa and Jon, for your imput. I have felt so much better since doubling up on my Lasix for a few days. My breathing has improved enormously. Jon, I will take that advice and call for a second opinion before using the inhalers. It is so good to be able to log on and talk to friends who understand and can offer suggestions. I'll keep in touch. Thanks again. Peace to all, Pat M. pmarble@tellico.net


Marsha H's September 5 reply to Tracey C's September 1, 2001 - Hi, Unless I am mistaken, the current thinking is that many ulcers are caused by h pylori bacteria. If that's the case, then a round of the specific antibiotics for ulcers may help. Coreg is prescribed to be taken with food, so it's probably considered an antagonist, like Prednisone and many other drugs. Best wishes to you and to all. jeffsmimi@earthlink.net


Donna, September 5, 2001 - Hi everyone, I was wondering about the requirements for a disabled parking sticker. Do you have any info about the required ejection fraction? Any info you could send me would be appreciated. Thanks! dcarroll@visuallink.com


Jon's September 5 reply to Donna's September 5, 2001 - Hi Donna, This is set by the state so there are 50 different standards. <g> In my state, it is distance you can walk without difficulty. That distance must be 100 feet or less to qualify. Your state's Department of Revenue or Division of Motor Vehicles web page should have the information or contact information for where to obtain the information. Jon.


Wendy B's September 5 reply to Lee B's September 5, 2001 - Hi Lee, I have that problem on occasion. I take (among many other things) digoxin and Lasix. I think I recall reading somewhere that Lasix can cause the lightheadedness and the fuzzy thinking. Maybe it's something to do with fluid balance? The fuzzy thinking is the worst. I'll be sitting at the office and find that I'm holding a piece of paper and I have absolutely no idea what to do with it or why I'm holding it. It doesn't last, but it's annoying! boozw@hotmail.com


Autumn, September 5, 2001 - Hi Everyone, I am one very lucky lady; lucky I am not in back in CHF. I ended up in the ER again Saturday morning after numerous episodes of tachycardia Friday night from severe apnea and throat swelling. My husband drove me to the city ER this time instead of the local small town hospital. They broke the insurance rules about pre-authorization (which Blue Choice has refused to give) and set me up with a CPAP machine right away. I have used it 4 nights with wonderful results.
     I saw my internist today and he said my liver swelling was edema from the stress on my organs because of the apnea, and that it was a good thing I got the CPAP machine when I did because CHF would have followed right behind. In the ER they were very surprised I wasn't already in CHF. With the CPAP my liver swelling has reduced. I will be following through with a letter to my insurance company to fight for them to pay for it and will let them know that if this cannot be settled I will get a lawyer. I will forward a copy of that letter to Protection and Advocacy, and the State Insurance Agency. I will see how things come out. Meantime, I am so thankful that I have the care I need. We really need to be our own best advocates, Autumn. AmberDawn-Blzn@webtv.net


Ann's September 6 reply to Jan's September 5, 2001 - Dear Jan, I live in the Boston area. I have been very blessed to have seen 2 very good cardiologists; Dr. Gary Brockington at Faulkner Hospital is top notch. I was also seen at the heart failure clinic at Tuft's University Hospital by Dr. James Udelson. I recommend both very highly. Good luck, Ann. laberley@massmed.org


Stephanie's September 6 reply to Lee B's September 5, 2001 - Hi, I have some of the same symptoms you do. Some days are worse than others. Some days I don't have it at all, but I know that it can happen at any minute. I always say I feel like I'm walking on a mattress. I think it could be caused by many things: medications, not enough sleep, not enough oxygen, etc,... I am trying to just live with it. I don't drive much and try to make sure that I'm never too far away from something or someone that I can hold on to. Best to you, Stephanie. moodystephanie@hotmail.com


Joe S' September 6 reply to Lee B's September 5, 2001 - Hi Lee, In my humble opinion, lightheadedness and dizzy spells are very common when CHF is first diagnosed. I think it has to do with low oxygen levels to the brain. CoQ10 helps the most, plus machines that put more oxygen in the air. It took me about a year of exercising, meds, and Jon's advice to stop these spells. Hey, at one time I couldn't even remember where I lived. Of course now I can't remember what I had for breakfast, but's that's simply old age, I hope. Joe S. jes@gbis.com


Jeanette W's September 6 reply to Donna's September 5, 2001 - Hi Donna, All you need to do is go to your town clerk's office or local Division of Motor Vehicles and ask for an application. You and your doctor fill it out and then you take it back to the motor vehicle licensing place or your clerk's office and they issue you one. It is that simple. There is no requirement except for your doc to fill it out. I have one and had my PCP fill it out for me and he was glad to do it for me. I gave it back to the clerk's office and received it the same day. They don't ask any questions about EF or anything like that. All they ask is how far you can walk and what your disability is and how long you have had it and if it is permanent or not. Good luck, Jeanette. jeanette841@yahoo.com


Jon's September 6 reply to Jeanette W's September 6, 2001 - Hi Jeanette, I run the risk of being too picky here but I think it should be said. Sometimes the ease of the application makes it easy to forget that we sign legal documents all the time.
     In my state, you must meet a requirement which the state has set up, to get a handicapped parking placard. What your doctor is doing when he signs that application is testifying on a legal document that he knows you meet your state's requirements for the placard. It is not a subjective decision for him, that he thinks you ought to get a placard. It is up to him to know your state's requirements and he is legally responsible for his statement that you do meet those requirements. You are equally responsible under the law in my state.
     So while the state does not actually test you before issuing such a placard, they can hold both you and your doctor liable to prosecution if you don't meet the state's requirements. I know it seems these placards get handed out to just about everybody under the sun but just be aware that this is a legal document being signed. I speak only of my state. Jon.


Walter K's September 6 reply to Lee B's September 6, 2001 - Hi Lee, See my September 4th post to Herbert L if you haven't already, particularly the Lasix part. Getting too dried out can really cause lightheadedness or dizzy spells. I suggest you ask your doc about this possibility. hknoth@magpage.com


Kathleen T, September 6, 2001 - Hi all, I've posted a few times and you've all been a great help. I'm a 32 year old female with 4 young children. I was diagnosed with DCM in February with an EF of 25%. It rose to 35% in March and has stayed put since. I take 9.375mg Coreg BID, digoxin (Lanoxin), aspirin, multi-vitamin and CoQ10. I talked to my cardiologist regarding CoQ10 and he told me I could take it and that it couldn't hurt but won't help. He said there is no proof of the benefits of CoQ10. Are there any proven facts about its benefit? I would appreciate the help to find the articles. I am still taking it because I've read it is beneficial and I'll do anything to be cured of this disease. Thanks for your input and thanks Jon, for this great site! kmctim@aol.com


Jim, September 6, 2001 - Hi, I just got home from a week in ICU after a series of events that were new to me. About 8 weeks ago I started getting very sick and dizzy, more than I always have. Thinking it was the CHF getting worse, I went to my doctor. He didn't think that was the case and thought it might be one of my meds. So I stopped each med for a few days and nothing changed. By that point I was in bed almost all day every day, and really sick.
     About 5 weeks into this I started to pass out with no warning - out like a light! After I did this about 5 times my wife said enough and called the ambulance, and away I went to the hospital. When I got there my blood pressure was 50/39 so they sent me right to the heart clinic. After a cath, electrical test, tilt table test, EEG, and CAT scan, they found that I have orthostatic hypotension, along with CHF and bad ASCVD. I didn't even know what that was, but found out that the CHF had caused brain damage by lack of blood flow. Now my brain is causing my heart to go into CHF and fibrillate.
     They put me on some new meds (Depakote) and told me to be very careful where I put myself so if I pass out I won't hurt myself. They say my heart is going into fibrillation at these times and they don't want to put in an ICD if they can help it because my heart not too strong. They are going to try the meds for about 4 weeks and if that does not stop it I will have to get an ICD.
     I am a class 3; maybe a low class 4. I think the problem is the baroreceptors in my brain. Has anyone else had this type of problem? They found a damaged spot on the left side of my brain. Thanks again Jon, for this site! It has been a real comfort to me to better understand this whole thing. I don't post much, but I read every word every day. God bless you, Jim T. jcrichtontaylor@voyager.net


Rod B, September 6, 2001 - Hi, Is there a difference - or much difference - between L-carnitine and propionyl-L-carnitine? I take L-carnitine. Thanks, Rod Butler. rvbutler@3web.net


Frank Smith, September 7, 2001 - Hi Jon and Everyone, The recent topic of dizziness, vertigo and unsteady behavior is certainly part of our CM/CHF disease. Recently I have been experiencing all of the above and I also have experienced the feeling of the main circuit breaker being turned off for just a nanosecond <g> but it isn't that funny. The last time it hit me, I was so terrified I called 911. While at the ER, the doc was as concerned as I was and we agreed, for obvious reasons, that an ultrasound of my carotid arteries would be appropriate. It turnd out that my right carotid was 85% blocked. After my fear subsided I was able to rationalize with a lot of professional input - which we must always sort out - that chances are I will more than likely go to my grave, if I have a grave to go to, with a seriously blocked carotid.
     Conventional wisdom says that many, many people go to their Maker with serious stenosis of their carotids and the operation to unblock is a very delicate and risky procedure. However, if anyone knows otherwise, please let us know. The idea of walking around with a stroke lurking in my right carotid is very unsettling. :-(. Later, Frank. fmsmith@inreach.com


Craig's September 7 reply to Tracey C's September 1, 2001 - Hi, I am currently taking 25mg Coreg twice a day. Within the first week of taking Coreg I developed severe heart burn. I had never experienced this problem before taking the Coreg. I tried many different stomach medicines before I finally settled on Protonix at 40mg once daily. I found that certain foods were especially hard on my system, such as chocolate, onions and fatty foods. My cardiologist had not experienced heart burn as a side effect from Coreg but didn't rule out Coreg as the culprit. The past 3 months I have not had a single heart burn episode. My doctor told me the problem would eventually get better. I quit taking my Protonix a week ago and feel great. I hope your problem is corrected soon! craigandliz@integrityonline.com


Dorothy Powells' September 7 reply to Jan's September 5, 2001 - Hi Jan, I had pericarditis about 1982. It felt like a bucket of cement was setting in the middle of my chest, although I was doing nothing more taxing than putting stickers on envelopes. I went to the ER and spent 3 or 4 days in the hospital and was told to go home and not lift anything over 5 pounds for 6 weeks. The doc said he could hear my heart rubbing against the pericardium (I think). I had been ill with strep throat about 2 weeks prior to the bout with pericarditis. I know this probably isn't helpful. I just didn't know the questions to ask. Best wishes, Dorothy. DPowell806@aol.com


Davida S' September 7 reply to Kathleen T's September 6, 2001 - Hi Kathleen, Most doctors say this but there have been several studies on this supplement. More lean towards it working versus not. I'm not sure but my husband's doc said it wouldn't hurt and he doesn't discourage it. His electrophysiologist told my husband to stop wasting his money.
     What do we say? My husband went from a less than 10% EF to 50% EF on his last echo in June. He has been on it about 14 months. We're not sure if it helped but when Dan started to improve the doc said continue what you are doing. So we wouldn't dare stop taking it because we feared it would make a difference. Either alone or combined with the the presciption drug therapy I am not sure, but I believe the proof is in the pudding. My husband was 35 years old when diagnosed and is now 36 heading to 37 in November with God's blessing. cavalier_1@msn.com


Tracey C, September 8, 2001 - Hi, I'm just going to vent a little. I had the pain and pressure that sent me to the ER last weekend. I've been taking the prescription Pepcid, which seems to be helping, but I'm still not feeling good. I had SOB for the first time on my walk yesterday and I have continous stabbing pains, whether resting or moving, in my chest and underarm area along with pain in both forearms.
     I have an echo next week and I'm sure I'm where I've been all year. It's just really disconcerting to have cardiac symptoms and be told that it's just my stomach. I've read that the stabbing pains aren't usually heart related so that at least makes me feel a bit better. They also have told me that GERD can cause SOB so who knows? I've just had a couple of straight weeks of feeling bad so I think it's getting to me mentally. Have a great weekend, everyone! 2tcollins@home.com


Bill D's September 8 reply to Frank Smith's September 7, 2001 - Hi Frank, My right carotid was blocked 65%. I didn't get it attended to and I had a stroke because of it. It was my speech center and I can't talk right because of it. You said that the operation to unblock is very risky, but I say "Bull!" You have a one percent (1%) of dying, just the same as with a cath. They kicked me out of the hospital in just one day.
     Have your cardiologist recommend somebody good to do the procedure. The only thing that went wrong with me was too much saline solution. It was 0.9% saline and it should have been 0.45% saline and I got congested, Bill D. billdog11@earthlink.net


Jon, September 8, 2001 - Hi everyone, For all of you who have an implanted device of some kind, please take a look a the following page for an invention that is supposed to ease seatbelt presure on implanted devices when in a car. Please let me know if this seems like a good idea to you - those who have a device - and let me know if you think I should add it to my Links page. See www.aboutsofttouch.com/. Thanks! Jon.


Ginger's September 8 reply to Frank Smith's September 7, 2001 - Hi, I don't know if this will help you or not Frank, but my mom had both carotid arteries done. One was 95% blocked and one was 75% blocked. She had a few small TIAs due to the blockages. She breezed through the surgery both times with no problems during or after. So the surgery is an option, I think. My stepfather is looking at having one done in the near future also. He will go for the surgery. He is 75 and has CHF and an ICD. Hope this helps, hugs and prayers, Ginger. angelgin@bellsouth.net


Jamie W, September 10, 2001 - Hi, I have PPCM and CHF. I am on Zestril, 60mg Lasix, Lanoxin, Coumadin and K-Dur. I was diagnosed about 6 weeks ago and had just started feeling human again, and adjusting to the meds but this weekend I have been so dizzy. I think it may be my blood pressure because I feel dizzy even when lying down, if that makes sense. Also, I am obese I was 283 when I went in to have my baby. Three days and lots of IV Lasix later I was 224, and am now 227 pounds. I have absolutely no appetite. I force down a little food 3 times a day but even some of my favorites almost make me gag. Does anyone else have this problem?
     I went to the ER yesterday because I thought I was short of breath, just to have my oxygen checked. My saturation was 99/100. Maybe because I keep feeling like I might pass out, I thought I couldn't breathe. Has anyone here who had PPCM recovered? Thanks for your help, Jamie. wilhoits@gateway.net


Frank Smith, September 10, 2001 - Hi, Thanks to Bill and Ginger for your comments. I realize it would be most imprudent for me to ignore an 85% blockage in my carotid, and perhaps my brain will work more efficiently. <g> thanks for the push in the right direction. Later, Frank. fmsmith@inreach.com


Jeanette W's September 10 reply to Jon's September 6, 2001 - Hi, You are right. I was just stating how it works for New York. The only guidelines you need to meet here is to prove your disability. Most docs here are not easy; They make sure you are disabled because they are signing a state document like you said. Most docs do seem to hand out handicapped parking permits like candy but in New York most docs won't, based on the fact that they could get in trouble for falsifying a document. What I was trying to get across was that after you have your document signed it is easy to get the placard. Most people in the DMV or clerks office won't second guess a document from your doc. Also to let you know that they don't ask weird questions about EFs or stuff like that. Take care, Jeanette. jeanette841@yahoo.com


Jon's September 10 reply to Jeanette W's September 10, 2001 - Well said, Jeanette. I'm one of those ornery fellows who reads everything before he signs it. I refuse to sign my own cardiologist's permission document before each appointment. That really threw the staff the first time. It gives them rights I don't want them to have and which they do not need to properly bill all 3 of my insurers. Most people don't realize that a doctor's office usually needs no "new" permission from a patient to bill insurers with whom they already have contracts. The insurer will pay anyway due to contractual requirements between docs and the insurance companies. So I spotted a chance to bring up that legal documents should not be signed casually. Sorry to nit pick.<g>
     When I was looking for a new general care doctor, one office's agreement even gave then the right to put pictures of any procedure, exam, or surgery of you on their web site for med students to look at. By signing that first document, you gave up all legal rights to privacy of any kind regarding their medical treatment of you. It also gave them the right to send copies of your records without your permission at the time to mental institutions and government agencies if they thought you were disturbed. Needless to say, when they refused to alter the agreement, I refused to sign and left without even seeing the doctor. By the way, this was a well thought of medical practice at a large hospital. I really suggest you read everything you sign, even if it makes your head hurt, which it almost certainly will. <g> Jon.


Bob N's September 10 reply to Kathleen T's September 6, 2001 - Hello Kathleen, I had an EF of 15% over a year ago too and now my EF is up to 35%. I credit it to taking CoQ10 since I was diagnosed. My cardiologist said that it wasn't from the CoQ10 but I think it was. Do not stop taking it along with your other meds. Good luck. bignick42@aol.com


Maree, September 10, 2001 - Hi, I am 69 years old and was diagnosed with HCM 3 years ago but doctors ignored it. Now I also have diastolic dysfunction, with marked reversal of E/A velocity and elevated right ventricular systolic pressure, and early anteroseptal hypokinesis. I also have sleep apnea and nothing is being done about that. I have asthma, rheumatoid arthritis, irritable bowel syndrome, and degenerative disc disease.
     This heart problem is new and I have been waiting since May to see cardiologist. Can anyone suggest what to ask about or look out for? I am sick of being pushed from one doctor to another. I live ina town of 46,000 which only has a visiting cardiologist except a general one at the public hospital. Regards to all. Thank you Jon, for your e-mail. This is a marvellous site. Better health to you all. mardean@bigpond.com


Ann B's September 10 reply to Jamie W's September 10, 2001 - Dear Jamie, I was diagnosed July 1, 2001 with DCM. I was put on digoxin (Lanoxin) in July and by the end of July or early August, I was in digoxin toxicity. It helped to read up on the medications. I was dizzy, nauseated, and was running pulses of 35 to 50 beats per minute. Please call your doctor and tell him your symptoms. Fine tuning of medications can be tricky. God bless, Ann B. laberley@massmed.org


Lisa K's September 10 reply to Jon's September 10, 2001 - Hi, Just an FYI: many state laws require that new authorizations be signed yearly, no matter the amount of time that you've been with the same doctor or insurance company. lkeenan1@maine.rr.com
 
Jon's note: I'm glad it's not so around here. It's been about 2 1/2 years since I signed anything at my CHF doc's office (in 2 states). I love it!


Jon, September 11, 2001 - Hi everyone, Should I put up recipes that require a lot of kneading, like recipes calling for homemade pie crusts? I know I don't have the energy for it but would like others' opinions. Thanks for any replies. Jon.


Joe S, September 12, 2001 - Hi, I'm at a loss here regarding what is going on with me. First I get CHF, which I seem to have under control. Six months ago they tell me I have diabetes - no symptoms, just the disease. Now 6 months later I am thirsty all the time and have to go to the bathroom 4 times at night. When I wake up, my mouth feels as if I've been eating cotton balls. I've even started to lose weight, which isn't such a bad idea. When I even go for a short walk in the sun I almost collapse. I don't know if what is happening is related to my heart or diabetes. Some nights just before bed, I find I have to drink 2 or 3 glasses of water or I feel very weak. Any ideas? Joe S. jes@gbis.com


Jon, September 12, 2001 - Hi everyone, The following pages on my site have been updated:

  1. Heartbytes
  2. Medspeak
  3. New CHF Meds
  4. The Huge List of Links

Jon.


John C's September 12 reply to Joe S' September 12, 2001 - Hi Joe, Those are classic diabetes symptoms. Your blood sugar is greatly elevated. You should see your doctor or go to an Emergency Room today! Without fail! This is an emergency. christian@lcms.org


Jeanette W's September 12 reply to Joe S' September 12, 2001 - Hi Joe, Don't feel bad, you're not alone. I have had DCM for over 3 years and when they took blood the last time I saw my PCP, they told me I have type 2 diabetes. I was in shock! I never had any symptoms or felt funny. Since I have been on my Actos for it, I have been dry mouthed, drinking more at night before bed and peeing a lot during the day on top of the Lasix I take. It could be your diabetes, but to make sure I would talk with your doc and tell him what is going on.
     As for the losing of weight, I haven't been doing that unfortunately <g> but the walks and being in the heat is part of CHF. I get very tired and have to watch how long I am out in the sun or I will collapse. For CHFers, the sun is very dangerous. The Lasix in your system does something so that you are very light sensitive and can burn easily. I found I have to wear a hat on my head when outside or my scalp looks like a lobster. I hope this has helped you out. Take care, Jeanette. jeanette841@yahoo.com


Ginger's September 12 reply to Joe S' September 12, 2001 - Hi Joe, On my web site, there is a section on Heart and Diabetes. I'm not sure if it will help but you can take a look and see. Maybe there is a link that will help you. If not, call your doc and ask.
     Now for a question. Has anyone here with DCM ever had problems with their femoral arteries? I am going for an echo tomorrow on them to see if poor circulaton is causing my leg pain. They have ruled out the common thing things like statins. I'm just curious. Hugs and prayers to all. angelgin@bellsouth.net


Joanne K's September 12 reply to Joe S' September 12, 2001 - Dear Joe, The symptoms you describe are those of uncontrolled diabetes. Are you testing your blood often? I would recommend that you get in touch with your health care provider immediately, Joanne K. JoKayser@adelphia.net


Carol W, September 13, 2001 - Hello to everyone, Has anyone else been troubled by anemia? I have had CHF for 5 years and for most of them I have been working to keep my iron levels up. Now I will be going to a hematologist to find out what is causing this and whether a shot of Procrit will help. I have read that furosomide can cause anemia. Does anyone have any other ideas? Carol B. cabwojo@adelphia.net


Jon's September 13 reply to Carol W's September 13, 2001 - Hi Carol, Try the Heartbytes page, looking for "anemia." Jon.


Jon, September 13, 2001 - Hi everyone, The ICDs & More page has been updated. Jon.


Joe S' September 13 reply to John C's September 12, 2001 - Hi John, I just took my blood sugar and it is 138. Last week it was 143. I have heard of people with blood sugars of over 300. I think there is a connection with my heart, the diuretics, and my blood sugar. I am going into town to get a scheduled blood panel. I greatly appreciate your concern. I will take care of myself, I promise, Joe S. jes@gvis.com


Jamie, September 13, 2001 - Hi, I live in Cartersville, Georgia and am trying to locate a CHF specialist near me. I'm not sure my doctors are doing enough. I was diagnosed 6 weeks ago and neither my magnesium or digoxin levels have been tested. I am on Coumadin so they have checked my Pro-Time. I saw the cardiologist once after I was released from the hospital and he told me to come back in 3 months. Does this sound right? He also won't repeat the echo until 6 months. Does anyone know of a CHF specialist here? Thanks, Jamie. wilhoits@gateway.net


Tracey C, September 14, 2001 - Hi everyone, I had my post-meds (except ACE inhibitor) echo today. The machine put my EF at 73% and the doctor eye-balled it at 60 to 65%. Either way is amazing. The tech did scare me though. She started to rewind the tape because she said it looked like my lateral wall was "bowed." She said she'd have to get the doctor. I asked what it meant and of course she didn't answer me. Do you have any idea what it could mean? The doctor looked and said he could see what she meant, but that it's like your nose - everyone's is different. Just my nature to still be concerned but he said all is well. My left ventricle has enlarged a bit, but is still within the normal range, while my right has shrunk rather significantly. I am just so thankful. God bless, Tracey. 2tcollins@home.com


John Len's September 14 reply to Loretta's September 3, 2001 - Hi Loretta, Come on over and join in the forum on sleep apnea, the equipment, and how to deal with it, at www.sleepnet.com/wwwboard/wwwboard.html. John Len. a_lenny6@hotmail.com


Jon, September 14, 2001 - Hi everyone, Two people have reported that my forms script is rejecting their posts. If this is also happening to you in the last 2 to 3 days, please e-mail me and let me know about it. Thanks. Jon.


John C's September 14 reply to Joe S' September 13, 2001 - Hi, 143 is not too bad; Bad enough to justify a trip to your doctor real soon, but not bad enough for the ER. Since you have a home test kit, try it about 2 hours after a "normal" meal, normal for you, that is. Normal readings are between 90 and 110. Above 150 is cause for alarm.
     High blood sugars are a cause of heart disease and are also the leading cause of amputations and blindness in adults, as well as kidney failure. It's not something to fool around with. There are oral medications that can treat adult-onset diabetes so you can probably avoid insulin shots, at least for several years. Do get treatment really soon. As with CHF, look for a specialist who is up on the latest meds. He should have a certified diabetes counselor on staff too. God bless. christian@lcms.org


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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