The paperwork never ends The Archives
August 16-31, 2001 Archive Index CHFpatients.com

Mary 8-16     allergic to oxygen tubing - help!
 
Fred D's 8-16 reply to Stephanie's 8-15     driving and CHF
 
Elton 8-16     Coreg question
 
Jon's 8-16 reply to Elton's 8-16     Coreg monitoring
 
William B's 8-16 reply to Stephanie's 8-15     driving and heart failure
 
Jeanette W's 8-16 reply to Ben B's 8-15     driving and heart failure
 
Jon 8-16     short-term plans
 
Trish R's 8-16 reply to Elton's 8-14     CHF docs in Oklahoma
 
Bruce's 8-16 reply to Bill B's 8-10     CHF and gall bladder removal
 
Jon 8-18     I'm back, sort of
 
Amelia's 8-18 reply to Tony T's 8-13     drug-induced lupus, verapamil
 
Amelia's 8-18 reply to Tom W's 8-14     radial/wrist/arm caths vs groin cath experience
 
William B's 8-18 reply to Jon's 8-16     Win 2000 Professional
 
Jon's 8-18 reply to William B's 8-18     Win 2000 Professional
 
Bill D's 8-18 reply to Mary's 8-16     allergies
 
Jon P 8-18     starting Coreg at home - questions
 
Jon's 8-18 reply to Jon P's 8-18     starting Coreg at home
 
Elton's 8-18 reply to Trish's 8-16     thanks, starting Coreg & more
 
Pauline 8-18     seek CHF docs in northern Delaware
 
Sherrell G's 8-18 reply to Stephanie's 8-15     driving and heart failure
 
Davida's 8-18 reply to Elton's 8-16     adjustig to Coreg & more
 
Jon 8-20     lost a few messages
 
Jan 8-20     am I depressed, worse, or what? & ICD question
 
Sheryl C's 8-20 reply to Jon P's 8-18     Coreg dose, symptoms to watch
 
Bill B 8-20     my gall bladder is gone
 
James P 8-20     intro
 
Vicki 8-20     losing my voice - anyone else?
 
Tom W's 8-20 reply to Amelia's 8-18     progressive hospitals
 
Tim 8-20     seek defibrillation experiences
 
Jon 8-22     hi
 
Milt 8-22     questions about going on a liquid diet
 
Jeanette W's 8-22 reply to Jan's 8-20     ICD and ham radio tower
 
Jeanette W's 8-22 reply to Tim's 8-20     defibrillation experience
 
Andrea M 8-22     update, EF, caths & more
 
Sheryl C 8-22     does anyone link Coreg to mental impairment?
 
Jon's 8-22 reply to Sheryl C's 8-22     I hope others also answer
 
Joe L's 8-23 reply to Vicki's 8-20     pulmonary hypertension possibility
 
Mary Lou L 8-23     depression and heart disease
 
Jon 8-23     depression and heart disease
 
Jack D's 8-23 reply to Milt's 8-22     liquid diets & doctors
 
Sharon P 8-23     traveling with CHF
 
Frank S' 8-24 reply to Jon's 8-23     depression
 
Jon's 8-24 reply to Frank S' 8-24     depression
 
Vicki S' 8-24 reply to Joe L's 8-23     update - larnyx problems
 
Ben B's 8-24 reply to Jon's 8-24     fibromyalgia questions & more
 
Jon's 8-24 reply to Ben B's 8-23     the & more stuff
 
Jana B 8-24     update - good news!
 
Jeanie C's 8-25 reply to Elton's 8-14     Oklahoma City cardiology group
 
Jack D's 8-25 reply to Frank S' 8-24     treatments for depression
 
Jack D's 8-25 reply to Ben B's 8-24     fibromylagia
 
Frank S' 8-25 reply to Jack D's 8-25     still,...
 
Mary Lou L 8-25     good heart Url
 
Jon 8-25     how about that artificial heart?
 
Jack D's 8-27 reply to Frank S' 8-25     depression treatment
 
Jeanette W's 8-27 reply to Sheryl's 8-22     Coreg inhibiting short-term memory
 
Katherine H's 8-27 reply to Ben B's 8-24     fibromylagia info
 
Fred D's 8-27 reply to Frank S' 8-25     depression and alcoholism
 
Jon's 8-27 reply to Fred D's 8-27     end of thread & more
 
Brad T 8-27     seek advice about possible CHF
 
Jon's 8-27 reply to Brad T's 8-27     echo may be good idea
 
Jon 8-27     Donna Z died Saturday
 
Jan R 8-27     seek mind/body book suggestion & more
 
Mary Lou L 8-27     visual disturbances update & more info
 
Frank S' 8-27 reply to Jon's 8-25     the Abiocor artificial heart
 
Bill B 8-28     teens dying in athletic programs
 
Jon's 8-28 reply to Bill B's 8-28     from good intentions to practicality
 
Brad T's 8-28 reply to Jon's 8-27     chest x-ray versus echo questions
 
Jon's 8-28 reply to Brad T's 8-28     chest x-ray versus echo
 
Walter K 8-28     tribute to Donna Zak
 
Pat M's 8-29 reply to Sharon P's 8-23     plane trips with CHF
 
Sandy 8-29     seeking book
 
Ginger's 8-29 reply to Bill B's 8-28     screenings for teen athletics
 
Jon's 8-29 reply to Ginger's 8-29     screenings for teen athletics
 
Jeanette W 8-29     on Donna Z's death
 
Tracey C 8-29     update & questions about eating out
 
Amelia 8-29     Donna Z & checking kids' hearts
 
Amelia's 8-29 reply to Sandy's 8-29     congratulations
 
Taavi K's 8-29 reply to Sandy's 8-29     heart transplant book
 
Fred D 8-30     having a rough time with docs & more
 
Jon's 8-30 reply to Fred D's 8-30     that's a tough one, no joke
 
Maggie S' 8-30 reply to Pam M's 8-29     effects of eating out & trips
 
Ginger's 8-30 reply to Jon's 8-29     this is a trial, more info
 
Jon's 8-30 reply to Ginger's 8-30     it's one tough idea to carry out
 
Julie G 8-30     my SSD was denied & more
 
Brandy 8-30     weird & disturbing experience - anyone else?
 
Joe L 8-30     seek CHF doc in Orlando, Florida
 
Sally M's 8-30 reply to Julie G's 8-30     pursuing SSA Disability
 
Rick 8-30     don't understand SSD denial & more
 
Bill D's 8-30 reply to Julie G's 8-30     pursuing SSA Disability
 
Pat Y's 8-30 reply to Julie G's 8-30     SSA Disability
 
Wendy B 8-30     heard of new CHF drug
 
Susie T 8-31     what is replacing dobutamine?
 
Jon's 8-31 reply to Susie T's 8-31     inotropes and Natrecor
 
Autumn 8-31     sleep apnea, doctors, insurance companies & more
 
Sheryl C 8-31     Oklahoma doctors & more
 
Mary's 8-31 reply to Rick's 8-30     disability struggles are weird
 
Henry S 8-31     night time struggles - anyone else?
 
Jamie W 8-31     ache near diaphragm - anyone else? & more


Mary, August 16, 2001 - Hi, I am in class 4 heart failure and on oxygen 24/7. I appear to have developed an allergy to my latex-free cannula and tubing. No one here in town can come up with a solution, having tried cotton batting around the hose, rubber attachments to lift it slightly off my face and many other things. The doctor says to ask the oxygen company for help and they say they have no answers. My face swells and appears to have a terrible sunburn. The skin is flaking and peeling constantly and the itching is the worst I have ever experienced. Has anyone had any experience with this type of problem? I have no idea what to do and not only is it affecting me, but my daughter that I live with is about to alienate everyone in the state due to her frustration over how miserable it makes me. Help, please! leapfrog0202@home.com


Fred D's August 16 reply to Stephanie's August 15, 2001 - Hi, I have had the same feelings about driving. It is as if you are not totally in control. I will not drive in traffic and feel very unsafe driving at night under any conditions. I had a problem with my equilibrium before I was ever diagnosed with CHF. It seems to have intensifed and this may be due to the meds that I take. Since I am no longer employed and I am receiving SSI benefits, there really isn't any need for me to drive unless I feel comfortable doing so. You might want to talk with your doctor about this but I would suspect that it is just part of the condition of your heart and the meds that you take. I take Lipitor, Imdur, Vasotec, Levothroid, furosemide, and potassium. I feel pretty good with these meds and all my tests are normal, so I am reluctant to change anything. If you have to drive, you need to talk with your doctor, otherwise let somebody else do the driving. deal@midusa.net


Elton, August 16, 2001 - Hi everyone, Thanks to each one of you who replied, and for doing so quickly. Someone - Christy W - mentioned that each time they raised her Coreg dosage, it was "back to bad daytime TV." Does this mean I won't be able to work? I know my test results say I have an unusually bad heart but I do still teach school. Is it even going to be possible to work and adjust to Coreg, assuming I soon find someone to monitor me on starting it. esteelman@mmcable.com


Jon's August 16 reply to Elton's August 16, 2001 - Hi Elton, You will probably be able to keep working, I think, although no one can be sure. As for monitoring, the most important thing is a to have a doctor's staff keep a close eye on you for about 2 hours after each dose change to watch for too-low blood pressure. In some people, this can be life threatening and that's why it's a must to be monitored. Other than that, the monitoring can be largely done by phone and a visit to the doc if you feel extraordinarily bad. It's not like you have to be in the hospital for weeks. <g> You do need a doctor who is smart enough and wise enough to know that you need this monitoring in the first place, though! Please get a doc who knows what he is doing! Jon.


William B's August 16 reply to Stephanie's August 15, 2001 - Hi, I think the term for this is decrease in cognitive ability. It is a decrease in awareness, a decrease in the ability to perceive objects or to remember ideas. I will intend to get my work done and what I start to do I will never finish, and when the day is over I do not even know how I got side tracked. The decrease in O2 will really mess with the mind. I doubt it has anything to do with fear but that you are well tuned to the changes in your body and the effects that CHF is making on our systems. Same here - I must totally concentrate on a simple tasks, even typing. William B. willdet@juno.com


Jeanette W's August 16 reply to Ben B's August 15, 2001 - Hi Ben and Stephanie, I have DCM and an ICD. My driving has not been affected by either. I have had DCM for over 3 years and on meds, and can drive unlimited. I recently had an ICD/pacemaker implanted and the only time I wasn't able to drive was the first month (doctor's orders). If the ICD doesn't fire, you can go back to driving after the first month but if it does fire, there is no driving for 3 months. My reflexes are normal and I have no problems driving. I hope this has helped you. Good luck and God bless, Jeanette. jeanette841@yahoo.com


Jon, August 16, 2001 - Hi everyone, Due to my daughter leaving for college very soon, I am helping her shop for dorm necessities - she can't drive due to poor eyesight. On top of that, a reader has saved my bacon by donating a new operating system for my computer (a huge thank you!) and I am going to upgrade in the next 24 hours. I'll be doing a clean install since I am moving to NTFS so I'll be down for 2 days, maybe 3. Of course, if NTFS warps me too far out of compatibility, I'll have to do it all over again with FAT32, so it could be 4 days, but I don't expect that to happen. My new motherboard is not compatible with my Windows 95 and I have been fighting it ever since the repair. Anyhow, if posts don't show up for awhile, it's not me being sick or anything and I will be back! <g> Jon.


Trish R's August 16 reply to Elton's August 14, 2001 - Hi, I haven't found a CHF specialist in Oklahoma but I don't think you can find any better cardiologists than the ones at the transplant unit in Oklahoma City. I have been going there for 9 months for transplant consideration. It is worth the extra drive. Let me know what else you find, Trish. rompers@net1.net


Bruce's August 16 reply to Bill B's August 10, 2001 - Hi, I was diagnosed with CHF in February of 2001. I just had my gall bladder out 8/7/01. After reading, it was probably due to cutting out fats, salts and other things out of my diet. Today has been one week and two days, and I feel fine. sib19@msn.com


Jon, August 18, 2001 - Hi everyone, Well, I am back, sort of. I have a lot of reconfiguring to do but everything seems to run fine under Win 2000 Professional except my scanner and I'll get that figured out as soon as I have the energy. Jon.


Amelia's August 18 reply to Tony T's August 13, 2001 - Hi Tony, I'm sorry I didn't get back to you sooner regarding drug-induced Lupus. Mine lasted about a year and slowly cleared up. I called NIH for info and they said it would be rare if it occurred again. Regarding your verapamil, if you are still having problems I think you should discuss it with your doctor and see if he thinks you should be on another kind of medication. I had to bring it to my doctor's attention. He wasn't a CHF doctor but I was having problems and was told it was not helping my heart failure. Best to you and all our ailing hearts. amelias@erols.com


Amelia's August 18 reply to Tom W's August 14, 2001 - Hi Tom, You are one of the few I know of who has had a heart cath from the inner arm. Back in the 70s it seems that was the way to go. Your heart cath team must be quite young not to have seen that procedure before. I had 3 caths on my right inner arm at the elbow. Since the late 80's I have had caths at the groin. The difference was that I had a larger incision requiring sutures but was told that the groin was easier to do. I also thought the recovery was better having the arm cath. Best to all, Amelia. amelias@erols.com


William B's August 18 reply to Jon's August 16, 2001 - Hi, A word from one who has been there, when you update to Window 2000 Pro, choose the FAT32 option and do not have any ISA devices on your computer. If you are going with Wn 2000 Pro it only uses PCI hardware. Outside the use for a server the NT will be a barrel of problems and make you wish you had never seen a computer. From Win 95 to Win 2000 NT is a move out of the dark ages into a never, never land. Run the small program from MS to see what hardware and software you have that is not compatible. An ISA modem will not work with 2000 and a lot of sound and vision hardware and drivers are not compatible. Gather all of your drivers at www.windrivers.com or www.software.drivers.com. Good luck. I've been running Win 2000 Pro since it came out and have installed it on a few machines. William B. willdet@juno.com


Jon's August 18 reply to William B's August 18, 2001 - Hi William, I'll be sure not to tell my ISA modem or else it might quit running so fast. <g> I have one shared ISA/PCI slot on my main board. My PCI modem would not run under Win 2000 Pro but my old 56k ISA Supra Max runs like a charm. :-) I did a week's worth of reading before the switch and did a clean install after fdisking my hard drives. This OS allows me to run a much higher refresh rate on my monitor, which I love, and has many other minor but much-liked goodies. All my apps except some freeware still work. Homesite is a lot slower on this OS but then again, it's a 1995 freeware version. <g> I write all my web pages in it still.
     I stayed with FAT32 because I am dual booting with Win 95 OSR2 (on fdisked partitions). I do plan on converting to NTFS once I check some apps, especially my scanner, for compatibility. If it doesn't look good I won't convert, believe me. However, NTFS is faster and more secure so I will be looking into it. Permissions would be more specific, file/directory specific encryption possible, and a few other very enticing goodies. For an extra 2 days work, I could always switch back from NTFS to FAT32, although I would have to fdisk my MBR as well to get it to boot.
     The Win 2000 Pro seems to have increased my overall computing speed by about 40%, probably because Win 95 didn't know how to make good use of my 512MB SDRAM or PIII CPU. The only downside has been my scanner not cooperating and having to set up 3 users (reminds me of Linux, but worse!).
     The resources available online for Win 2000 Pro are much more professional. The NSA has some real good stuff available for free download. Jon.


Bill D's August 18 reply to Mary's August 18, 2001 - Hi Mary, You said this is affecting your daughter and you. I think you and your daughter are allergic to something else. Maybe you could get an allergy doctor to come round. Do you have cats or birds? Bill D. billdog11@earthlink.net


Jon P, August 18, 2001 - Hi, My VA doctor took me off 40mg metoprolol, gave me a prescription for 3.125 Coreg BID and said, "Come back in 90 days." Everything I've read about Coreg says you should be monitored when taking your first dose. Is this true? If so, what should my wife (since obviously the doctor won't) watch for? jon.parker@att.net


Jon's August 18 reply to Jon P's August 18, 2001 - Hi Jon, I would suggest you get a doctor to be in the vicinity. Low blood pressure is the primary danger. Some people's blood pressure drops far enough fast enough that if you are not in a medical setting, you are probably dead. Your wife would not be able to help. I am not saying this is likely - it's not - but it has happened and is definitely possible. Jon.


Elton's August 18 reply to Trish's August 16, 2001 - Hi, Thanks for your post, Trish. I already go to Baptist (Integris) and I agree about the Oklahoma City transplant folks; They're great, the nurses, everyone! Jon, I'm not starting Coreg without finding a doctor who knows more about this medication than I do! Thank you all for your concern and help, and Jon, thanks for the note about being able to keep working. esteelman@mmcable.com


Pauline, August 18, 2001 - Hello everyone, As I've posted before, I was diagnosed with heart failure in August of last year. Well, July 26th of this year I had a heart attack. The doctor said my heart took as much of a beating as it could. He also told me I had fluid in my lungs when I was admitted to the hospital. Since the cardiologist who treated me doesn't see patients outside the hospital, he advised me to find a cardiologist quickly to monitor my care.
     The Delaware Heart Group was mentioned, specifically Dr. Hopkins and Dr. Marshall. Does anyone see either of these cardiologists, and if so, how are they? Do they have a good bedside manner and treat their patients as people, not numbers? Are they knowledgeable and thorough? I would appreciate any information concerning these two doctors, or any others in northern Delaware, since I have to find a cardiologist as soon as possible. Thanks, Pauline. VivaGesuAveMaria@aol.com


Sherrell G's August 18 reply to Stephanie's August 15, 2001 - Hi, Stephanie, Just as some of us feel better than others with low EF, I think the same thing applies to what we are able to physically do. I prefer to save my energy to enjoy the outing once I get there instead of arriving tired from driving. During heavy traffic, bad weather, and the days when my energy level is low, I do not even attempt to drive. I usually have someone available to take me where I need or want to go. I don't miss driving at all. I've become a pretty good co-pilot! :-) sherrellgay@juno.com


Davida's August 18 reply to Elton's August 16, 2001 - Hi Elton, It's about adjustment. Your body has to adjust as your medicine is adjusted. Those who do well on Coreg have an improvement in their CHF. After all, it wouldn't be such a popular drug if it did not improve the conditions of many people's "lives," but everyone is different as to how their body reacts during the adjustment. My husband had to be taken off of Coreg because of side affects. I would encourage anyone taking Coreg with persistent side effects to contact Smith-Kline's customer service desk. They want to hear about it. They are still tracking the effects of Coreg on CHF. They will ask you what meds you are on and who your physican is for follow up. They may even have some helpful tips to help you adjust. Cavalier_1@msn.com

Jon, August 20, 2001 - Hi everyone, I lost a few messages due to hard drive/CD shuffling, so if I don't answer an e-mail or post you sent me, please resend it. Thanks, Jon.


Jan, August 20, 2001 - Hey everybody, I've been avoiding you all for some time now. It seems when I'm feeling good I just blow it all off. Now I've had a few bad days and need some encouragement or something. I am class 2 but am have had 3 or 4 bad days in a week with a working husband and 2 toddlers at home. I am fatigued, have burning muscles and lungs, general chest pain, etc,... Am I moving into class 3? I am seeing a therapist; Am I getting depressed or am I getting worse physically or am I just tired?
     I also have a question about my ICD. I have a neighbor who is really into ham radio and has just put up another 35 foot tower. Is it safe for me to go there? What's happening? Jan. therowlands@att.net


Sheryl C's August 20 reply to Jon P's August 18, 2001 - Hi Jon P, The symptoms to watch for with Coreg are extreme dizziness and mental confusion. You need to buy a BP monitor and check your BP at home for awhile or when you feel especially bad. If my systolic BP (the top number) drops into the 80s I usually know it because I walk like a drunk and don't drive on those days. There are other side effects of which you need to be aware. Read your drug literature that accompanies your prescription. If you feel bad, also check your pulse to see if it is low. I had to drop back to 6.25mg because I could not handle a higher dose. I was so tired and depressed my life was miserable. Take care. sheryl_sh@hotmail.com


Bill B, August 20, 2001 - Hey everyone, Thank you all for your replies. Friday (8/17) they took out my gall bladder. The surgeon said it was a real mess and the bile duct was shot from the stones. Wow, I am sore from the surgery but I already feel better. I am taking high-dose antibiotics. It's amazing to me how they can get that thing out of there and have you home the next day. My cardio guy was there and said my heart tolerated the surgery very well. Jon, I wish you could have had it as easy as I did. I have seen God do miracles and I am praying for you to be healed. So get ready. God bless all and thanks again, Bill B. fedx44@yahoo.com


James P, August 20, 2001 - Hi, I wanted to just say I am a newcomer to this site. I have had heart failure now for about 6 months and I am filled with questions. This site is a helpful tool for someone like me. Hello to you all, JP. ctagliarini@ncweb.com


Vicki, August 20, 2001 - Hi, I was diagnosed with idiopathic cardiomyopathy in February. I had a lot of tests including a catheterization. My EF at the time was in the 40% range. Now, a little less than 6 months later, my EF is 53%. I was on Prinivil and Coreg up until now. I now have a new doctor and he added Lanoxin and dyazide to my Rx list.
     I teach school and for the last couple of years, I've been noticing that I have a lot of trouble projecting my "teacher voice." It is getting worse and worse. My new doctor thinks I may have a paralyzed vocal cord related to fluid build up. Has anyone else had anything such as this? It is getting impossible for me to speak loudly enough for the class to hear me. When I force myself, it literally makes me have pain in the right side of my chest. Please let me hear from you if you've had anything similar. I am so frustrated trying to teach! Thanks and God bless you all, Vicki. Snevetsii@aol.com


Tom W's August 20 reply to Amelia's August 18, 2001 - Hi Amelia, This was the same "progressive hospital" which did not want me in the delivery room for the birth of my oldest son in 1978. <g> tew4515@yahoo.com


Tim, August 20, 2001 - Hi, I had to be defibrillated during my recent heart cath. Are there any consequences to this being done other than still being here? tmshea@bellatlantic.net


Jon, August 22, 2001 - Hi everyone, Well, Linz is off to college today and Linda won't be back for a few days so maybe I can start catching up. I'll try to be caught up on posts by Saturday but I am pretty tired right now. Jon.


Milt, August 22, 2001 - Hello, I hope everyone is having a good day. Jon, God bless and thank you for the great site. I go to a CHF/heart transplant clinic and they do make a difference compaired to my first cardiologist. Now to my question. I was diagnosed with DCM and CHF in November, 1995 . I take the standard meds: Coreg, Cozaar, Altace, Demadex, Lipitor, and Glucatrol XL and Actos for diabetes. I have stablized at an EF of 50% for theh last 2 years. My last cardiolite stress test was 5/15/01. On August 14 of this year, the cardio doc said I still need to lose weight and because I seem to yo-yo 3 to 10 pounds. He was very adamant about me going on a liquid diet. It is an 800 calorie diet of 5 "shakes" per day. It is by HMR. My PCP says it is an older diet she does not use anymore. Does anyone have any thoughts about this? Good idea? Bad idea? By the way, he wants me to lose 80 lbs. He seems to think most of my problems will go away with this weight loss (not the DCM/CHF). Spaz_1@msn.com


Jeanette W's August 22 reply to Jan's August 20, 2001 - Hi Jan, I have an ICD too. No, there is no risk to that antenna. I am near a cell phone tower and I don't have any problems with it or any other towers. You should be fine. The only things that would cause any sort of problems are airline security checks. Don't go through the scanner and don't let them hand wand you either. That can cause the ICD to turn off. Make sure they hand frisk only. Also be careful of cell phones. Make sure you use the other ear that the ICD is not on. I haven't had any problems but that is one thing they tell you to be careful about. I hope this helps you out. Take care, Jeanette. jeanette841@yahoo.com


Jeanette W's August 22 reply to Tim's August 20, 2001 - Hi Tim, I have an ICD. When they implanted the device they stopped my heart on two occasions and shocked me back. I felt nothing and have no side effects or any problems. Did they do this on purpose to see what your heart was doing or did you go into cardiac arrest? I have heard of some caths done and they shock you to see how your heart manages for arrhythmia problems. I hope this helps you out. Take care, Jeanette. jeanette841@yahoo.com


Andrea M, August 22, 2001 - Hi everyone, I have sure missed all of you! I have been adjusting to all the changes in my life lately and haven't been checking in here. I hope you haven't forgotten me but it's okay if you did. <g> Tom W, I just gotta say God bless you for sharing with me your experiences with the radial cath. I had it in January and things looked great, with no blockages, but I did develop an arrhythmia. I am scheduled for an ablation in September. The electrophysiologist won't use an arm vein for it because he is to do the EP first, then ablate whatever he finds (hopefully) and his thought is that the arm vessels are smaller and more crooked. I must admit that I no longer fear the groin procedure like I did before the cath in January.
     I am including all my wonderful friends here in my prayers, even if you don't remember me. Oh yeah, my EF has unfortunately dropped from 35% to 20% and I feel it too! I have also recently begun my first year home schooling my kids, ages 7 and 4. I know this is an added stressor in a way but I am so happy and less worried about them since they're at home. Love and prayers, Andrea andrea_27_NC@msn.com


Sheryl C, August 22, 2001 - Hi, Earlier I stated that confusion was a side effect of taking Coreg. My mom's doctor told me that it is not one of Coreg's side effects. He implied that I was ditzy in general (since I take it) rather than the drug causing it. Does anyone agree with me? sheryl_sh@hotmail.com


Jon's August 22 reply to Sheryl C's August 22, 2001 - Hi Sheryl, Whether you be ditzy or not, Coreg can cause mental impairment. <g> The manufacturer says that less than or equal to 1% of Coreg trial participants suffered "impaired concentration." Besides, anything that significantly lowers blood pressure can impair mental function. Jon.


Joe L's August 23 reply to Vicki's August 20, 2001 - Hi Vicki, Have you been checked for pulmonary hypertension? A hoarse voice can be a sign of an enlarged pulmonary artery. The pulmonary artery begins to press on your vocal cords and thus interferes with your voice. Also, the fact that you have chest pain when you raise your voice may also be an indicator of pulmonary hypertension. I have cardiomyopathy with pulmonary hypertension due to impaired relaxation of the left ventricle. It is not rare to have PH caused by cardiomyopathy. It is something you may want to have checked out since it appears you have not received a clear answer from your doc. Good luck and God bless. JTLucido@aol.com


Mary Lou L, August 23, 2001 - Hi all, The topic of depression has been mentioned in several posts here at Jon's site in the past. Recently I came across an article on WebMD and want to share the information with you. A study done at Duke University regarding depression and heart failure has shown that people with heart failure and depression are about twice as likely to die or to be readmitted to the hospital in the ensuing year, compared to those with heart failure who are not depressed.
     Most of us are already on several meds and even though there hasn't been a specific study to determine if adding an antidepressant to heart medications is okay, according to the article the newer class of antidepressants, called selective serotonin reuptake inhibitors such as Prozac and Zoloft are, according to Duke University, recommended because they tend to interact less with other medications. If you suspect you might have depression please tell your CHF specialist, cardiologist or primary care physician because depression might shorten life or put you back in hospital. To assess whether you're depressed, ask yourself:
     Over the past couple of weeks, have you been feeling blue or down most of the time or feeling sad for unknown reasons? Have you lost interest in doing things you used to enjoy? Are you experiencing problems sleeping? Do you sleep too much? Too little? Do you awake frequently during the night and have trouble falling back to sleep? Are you tired even when resting? Do you get upset or angry at minor things? If you answer yes to the above questions, talk to your doctor. You may be depressed. Other symptoms of depression to look for include decreased energy, fatigue; changes in appetite or weight; difficulty concentrating, remembering, making decisions; feelings of guilt, worthlessness, or helplessness; thoughts of death or suicide. Depression is not just feelings of sadness, hopelessness, or helplessness that can result from having a potentially life-threatening medical condition - it is a distinct medical condition affecting the body, mood, and thoughts. Doctors consider it treatable. I Love Jesus too, Mary Lou. MLBinks@aol.com


Jon, August 23, 2001 - Hi everyone, To add my two cents worth to the WebMD article on depression (not replying to Mary Lou but to the info from Duke), I must ask: Are MDs qualified to diagnose depression? To treat it? Is it always just physical? Is it always just mental? Emotional? Spiritual? The concept of depression tends to get labeled as one or the other of these things and then is treated by a practitioner of that specific area. I believe this is most unwise.
     Drugs which significantly alter brain chemistry should be used sparingly, for obvious reasons. Then again, psychobabble won't help a chemistry problem, neither drugs nor psychobabble will help a spiritual problem and maybe none of the above will help plain old loneliness - a cause of more depression than most people think - only human company (dogs help too) relieves that.
     Please do not rely on your MD alone to treat you for depression if you think you are depressed - or if he thinks you are depressed. Please likewise do not rely only on a psychiatrist or psychologist or minister. Do your homework just like you do on heart failure, get second and third opinions from people in these various fields - all of these fields if possible - and then decide if you are depressed or merely having a normal, albeit heavy, reaction to stressful times. Sometimes just being so proactive on your own behalf helps more than you would believe.
     An interesting note on studies of heart disease and depression: studies have not disovered if depression results from heart disease, contributes to heart disease, or merely sometimes coincides with heart disease. Nor have such studies discovered whether it is really depression that contributes to higher mortality or whether some other variable that is more common in depressed people but not linked to depression itself is responsible. Nor have studies tested chronic use of antidepressant meds with concurrent use of CHF meds. Nor have such studies separated specific populations and studied them, meaning that CHFers have not been studied as a group, related to depression.
     Depression is not even tightly defined by clinical characteristics that can be objectively measured with repeatable consistency, nor its treatment. How do you study what you have not defined? Notice the incredibly wide range of symptoms the article listed that may point to "depression." Are these related? How? Why? Can this same wide range of symptoms possibly point to diabetes? MS? Heart failure? Of course!
     I guess my point is that depression is often talked about, reported on, and studied yet never addressed except from one group or another's tunnel-like perspective. Some of these various disciplines (psychiatry, medicine, religion, etc,...) should get together and define depression, then really study it. Then maybe I could put some value on their findings. Throwing potent drugs at a loose collection of symptoms seems risky to me.
     By the bye, I have been clinically depressed - long before getting a heart problem. I do not think the reaction many of us go through after CHF diagnosis is always - perhaps not even often - real depression. Just my 2 cents worth. By the way, antidepressant drugs were not what saw me through and past depression. Jon.


Jack D's August 23 reply to Milt's August 22, 2001 - Yo Milt, It doesn't sound like this guy is a doctor at all. It sounds like something some gum-popper in a health food store would recommend. Diets like that do nothing but boomerang and you would most likely be exceeding your fluid limit for the day, which would increase edema and most of those "shake" drinks are heavy on the salt. There are better ways to lose weight. maddjak@hotmail.com


Sharon P, August 23, 2001 - Hi, My husband and I just returned from West Virginia and it wasn't an easy trip. We flew from California via Chicago to Columbus, Ohio. The plane departed from the gate in Chicago pretty much on time but only to sit on the runway for the next 1 1/2 hours in 95 degree heat and humidity with no air conditioning. Need I tell you about the effects of the heat when you have DCM and CHF. I was hesitant to say anything since I've heard more than one horror story about being removed from flights and not permitted on others when ill with heart problems. Assuming that when we were airborne the AC would kick on and I would be okay, I didn't say anything.
     It was a foolish decision since it never cooled off and I came close to passing out. I finally broke down and had my husband request water, ice, and towels which helped. Beverages weren't being served because of the turbulance. On our return home I went prepared with frozen water, drinking water, and towels. With two 3-hour delays it came in handy. The trip took its toll on me physically and I've spend the last 2 days on the sofa. Tomorrow I see my CHF nurse practioner.
     The lessons learned were that when I was feeling so poorly, my judgement was impaired and next time I must be better prepared. I'm now making reservations for Pittsburgh at Thanksgiving and we're making sure its a non-stop flight. The cost is higher, but hey, I'm worth it. Blessings to all, Sharon P. sparker103@home.com


Frank S' August 24 reply to Jon's August 23, 2001 - Hello Jon and all, When we had a very heated debate about 15 to 24 months ago concerning depression and whether or not it is real, and to watch out for those pills that alter the brain, and Jon's suggestion then and now that a lot of people's illness when it comes to the brain may not be what the patient thinks it is and so on, should really be put into a proper perspective.
     The neuroscience of the brain was in its infancy so to speak, just 20 years ago. Since that time, research has proved that many of our moods can be attributed to chemical (neurotransmitters) imbalances in the brain. We now understand that serotonin, among other things, controls one's mood, and therefore is crucial in the proper amount for a person to feel normal. These medications most people do not understand and therefore are afraid of, which adjust the chemicals in the brain have, until something better comes along have quite literally changed and saved lives. For better or for worse, these so called feel better pills are here to stay and my guess is that ignorant people whose brains are not working in a normal manner will continue to suffer because they have allowed themselves to become biased, which is something I learned about people at Jon's Place after this very important issue arose a while back.
     Please remember that knowledge gives us the power not to be biased, even when our brains can and do frighten us unnecessarily. Later, Frank. fmsmith@inreach.com


Jon's August 24 reply to Frank S' August 24, 2001 - Hiya Frank, You simplify - there was no disagreement about whether depression is real or not, just about whether states other than depression are often mistakenly labeled as such. I worry a great deal about depression "studies" as they relate to heart patients. A lot of heart failure patients treat them as being as objective as CHF drug trials, which they are not. Here are 2 quickies:
     Point one: Heart failure is still not understood and it has been intensely studied far more closely and with better funding than the human brain, and is a less complex system. What was medical "fact" just 10 years ago in heart failure circles is now considered plainly false. Beware the science god - it is fickle.
     Point 2: I leave it to my readers to decide if I fear new medical information or am unable to find and comprehend it. <g> Empowerment is what I "preach" here day after day, year after year. I stand by what I say, although not by your interpretation of what I say. Jon.


Vicki's August 24 reply to Joe L's August 23, 2001 - Hi, Thank you Joe, for the info. I will check it out. I am going to an ENT (ear, nose and throat) doctor 2 weeks from now and also back to my cardiologist on the same day. I saw my cardiologist yesterday and he said he thinks it's my larnyx. He doesn't think it is my lungs. We'll see. I am really having a hard time dealing with this. He seemed to think that since I haven't felt any improvement since I've been on the diuretic that the problem isn't fluid buildup. Thank you for responding. I'll keep you posted. God bless, Vicki. snevetsii@aol.com


Ben B's August 24 reply to Jon's August 23, 2001 - Hi, First of all, don't anybody get mad at me - I'm just asking a question. Well, maybe giving a little opinion too. <g> I agree with Jon that psychotropic drugs are prescribed way too often for all sorts of things. Most notable is Ritalin, which is way over-prescribed for ADD, in my opinion.
     However, I would go one step further. Can anybody tell me what quantifiable tests are used to diagnose a physical malady such as fibromyalgia? I have read a good deal about this and as far as I can see it is diagnosed simply on the basis of a loose collection of symptoms for which they can find no other reason. Although some researchers may have opinions as to its origin, I have yet to read about a definitive study. However, when people with extreme fatigue and muscle pains of unknown origin are told they have fibromyaligia, they seem to accept it hook, line, and sinker. For some reason, the notion that something might be in somebody's head or be an emotional or spiritual problem is completely disregarded. It is almost as if the human brain is not even considered to be part of the physiological system. If a person is told their symptoms are not physical, they get furious; But if they are told the problems are physical even though there is no real test or source of the problem, they are happy.
     Perhaps somebody could tell me what the clinical tests are - quantifiable - for fibromyalgia. What about chronic fatigue syndrome, while we're at it? I don't suffer from these things so maybe I just haven't researched them diligently enough. If you do suffer from these things I'm not questioning your symptoms - just your diagnosis. bdbrinkman@juno.com


Jon's August 24 reply to Ben B's August 24, 2001 - Hi Ben, I dunno. I have never looked into fibromyalgia. The rest is pretty easy, though. If a person or culture disregards the validity of the spiritual, they must have reasons that fall outside the spiritual realm for everything, period. Many people today think that because we have come after our predecessors, our reasoning is somehow superior. However, we use the same physical human organism to think and reason that was used by the people who swore men are spiritual creatures in times past. No great "evolutionary" jump has occured in men's ability to think.
     So why many people assume the current popular concept of the universe as purely physical is inherently superior, I have no idea. Pride? (if I cannot label and study it, it must not exist) A desire to believe we completely control our own destinies? (what I do not believe in cannot affect me) Fear of accountability? (I want to do what I want to do without anyone saying it is wrong) Laziness of mind and thought? (studying the spiritual requires confronting many difficult moral issues that require decisions about one's own life and life style)
     "Professing themselves to be wise, they became fools." I'll let you guess where I got that quotation. ;-) Jon.


Jana B, August 24, 2001 - Hi Jon, My husband got laid off from his job of 17 years so my medical insurance was ending at the end of July. I made an appointment and went in and had them run every test imaginable until my insurance with the new job kicks in in October. Anyway, they just called me this week and told me that all my test results came back normal and that my heart size had "significantly decreased" and my heart was normal size. God is so faithful!
     For those who don't know, I am 38 years old, had a stroke 2 years ago and was diagnosed with DCM, mitral valve regurgitation, global hypokenesis (stiff heart wall) and CHF. My EF was 19 to 21%. My mom died from this disease, as did her mom. My 21 year old son was diagnosed with it in November of 2000. Regardless of all these facts, at some point in my journey with all this, God confirmed a healing to me. I was feeling okay but my results kept coming back bad. Every time I asked God about that, He would reveal to me that my body was just catching up to the work He had already done in me, spiritually and physically.
     So, I just wanted to share that good news with you all! I hope you all will be encouraged. They aren't calling me cured yet, but that's okay. Know that you are in my prayers, Jana Byers. JByers4u@aol.com


Jeanie C's August 25 reply to Elton's August 14, 2001 - Hi, There are a group of cardiologists in Oklahoma City with a group of about 9 or so doctors on the team. I believe they are located at the Integris Heart Center at 3366 NW Expressway Street, Oklahoma City, Oklahoma, 73112. Their phone number is 1-800-522-6755. mrs_critter@yahoo.com


Jack D's August 25 reply to Frank S' August 24, 2001 - Hi Frank, Brain science is still in its infancy. Yes, they have proved that electrical stimulation of different parts of the brain causes different things to happen, and they have proved that different chemicals alter your perception of reality - LSD, alcohol, marijuana, Prozac, etc,... What they haven't proved and have no test for is any chemical imbalance in your brain. They have theories but at best they are all different versions of Dr. Jekyl and Mr. Hyde.
     There are no good-guy, bad-guy drugs. There are only drugs that alter your behavior and many people believe that these behavior altering chemicals do nothing but mask the real problems until they explode. Like Columbine, the woman who drowned her 5 children, and many other tragedies have been linked with psychotropic drugs. If there was a science of brain-chemical balance and imbalance there would also be a definitive test to determine which chemicals were in or out of balance and a "norm" to strive for. This animal doesn't exist.
     The only means of determining that a person needs any of these dangerous chemicals is a psychiatrist, a 24 year old grade school teacher or basically anyone else who feels like practicing medicine. The majority of these drugs that are prescribed to the millions of children in this country are on the advice of some gum-popping bimbo who is on her first teaching assignment out of college. This country is way too dependent on the magic pill that cures all ills, and that is really scary.
     So Frank, take up this challenge: Bring us the names of these chemical balance tests and where we can find them to learn for ourselves. maddjak@hotmail.com


Jack D's August 25 reply to Ben B's August 24, 2001 - Yo Ben, No tests for fibromyalgia. I have a friend who was tentatively diagnosed with it because it's really a catch-all for aches and pains. They went ahead and did a battery of tests on her and found that she had mitochondrial myalgia, which is very definitely a disease that can be diagnosed from tests. It has been brought under control with CoQ10. maddjak@hotmail.com


Frank S' August 25 reply to Jack D's August 25, 2001 - Dear Jack, What is really amazing is your contrary approach to a very serious subject, which most people choose not to educate themselves about. The fact that there are not yet blood tests to determine the amount of chemical balance in the brain does not interfere with the challenging science which has led to so much help for so many. I dare say that there are hundreds of people at Jon's Place who have been disabled but helped by the unremarkable yet amazing medications which literally bring people back from the edge of seemingly irreversable despair. Later, Frank. fmsmith@inreach.Com


Mary Lou L, August 25, 2001 - Hi all, For an interesting view of how your heart's chambers, flow of blood, cardiac cycle, conductive system, and valves work, try www.intelihealth.com/IH/ihtIH/WSIHW000/8059/8049/317250.html?d=dmtContent (Jon's note: requires Flash). I love Jesus, Mary Lou. MLBinks@aol.com


Jon, August 25, 2001 - Hi everyone, Did anyone see the press conference with the recipient of the AbioCor artificial heart on television the other night? The guy looked pretty good for someone who was as good as dead a month ago, didn't he? I know such a heart is not for very many people and that his prognosis is still poor but I was surprised that he looked as good as he did. Pretty amazing.
     I am taking the pooter back to the shop tomorrow (yes, Sunday) for a quickie data cable replacement. I have everything but my sound card working but am tired of fixing stuff the repair shop screwed up so I'm leaving the last problem to them. They are pretty embarassed about it, I guess, since they said they'd do it while I wait (and watch <g>). Jon.


Jack D's August 27 reply to Frank S' August 25, 2001 - Hi Frank, I just wanted a definitive answer. Yes, this is a very serious subject, but it is being broached by thousands, if not millions, of "professionals" who know nothing about it. That's why, even in the commercials, they have a little scrubbing bubbles cartoon guy showing how the chemicals get moved so they will be in balance and that is why the drug companies are required to state, "This may be due to a chemical imbalance in your brain." That said, I will continue my campaign to keep people from succumbing to the fantasy presented on the silver screen. maddjak@hotmail.com


Jeanette's August 27 reply to Sheryl's August 22, 2001 - Hi Sheryl, I am on 12.5mg Coreg twice a day and let me tell you that you are not ditzy! I have been on Coreg for over 3 years and have not had much of a short-term memory since. I can remember stuff way back like my old locker combination from high school <lol> but if you tell me I have an appointment tomorrow for my heart I have to write it down or I will not remember. I have to write everything down or I will just simply forget it.
     It is a known fact that Coreg can do this. Believe me, I am one that can prove it. Your doctor needs to talk with me and then he can see for himself, and if he called me ditzy? I would find another doc. My cardiologist even told me this could happen over a period of time. He wasn't kidding. On the up side, you do get used to it and well, I am a natural blonde so,... (you know where I am headed) <lol> To put your mind at ease, you are not the only one with this problem. You can e-mail me and I will do my best to help out any way I can. Good luck and take care, Jeanette, the blonde from New York. jeanette841@yahoo.com


Katherine H's August 27 reply to Ben B's August 24, 2001 - Hi Ben, The diagnosis for fibromyalgia should be done by a board certified rheumatologist who checks for a multitude of very specific pressure points in the body. There is even a diagram that points out exactly where the points are and how many tender ones you should have to be diagnosed with fibromyalgia. If they are tender - and by tender I mean if pushed right, you about jump off the table - you get a diagnosis of fibromyalgia. I received one about 8 years ago.
     Unfortunately, there is no definite lab or blood test to verify the physical test and unless you have received the diagnosis specifically from a board-certified rheumatologist - and state it that way when you are talking to other medical professionals - you are not believed. Fibromyalgia used to be called "crazy lady disease" because there is no definite lab test - only the physical one. However, I can tell you it is very real and can be very painful. kholian@metropo.mccneb.edu


Fred D's August 27 reply to Frank S' August 25, 2001 - Hi, I am a recovering alcoholic. I have been sober for three and one half years. I know what alcoholism is, I know what it feels like and what it can do. Anyone who is not an alcoholic has no idea of what we think and feel, no way, no how. I also suffer from depression and take Wellbutrin and it helps. I went through a number of anti-depressants before I was precribed Wellbutrin by a psychiatrist at an alcohol treatment center. Does it keep me from getting depressed? It helps, and I would not want to try and live without it anymore than I would want to try and live without AA and my weekly meetings. My point is, if you ain't been there, you really have no idea what a disease is. It's kind of like telling someone that has just lost a child, that you know how they feel. If you have not lost a child, you do not have a clue as to what that person is experiencing. deal@midusa.net


Jon's August 27 reply to Fred D's August 27, 2001 - Hi everyone, As moderator, I am ending this depression thread.
     Fred, I and others here have been addicts. I have also been seriously depressed and was on anti-depressants for awhile due to a serious on the job injury. However, a person is always free to comment on this forum about a topic whether or not they have personal experience with it. I understand that you don't think so and that's cool. However, I want everyone to know that they are free to post here whether they have personally experienced something or not. I appreciate your comments that an anti-depressant has helped you; that's a useful message and your sharing it is appreciated.
     Frank, no one said anti-depressants have no value. If you didn't see me urging people toward empowerment of the individual in my message posted after Mary Lou's, maybe I should talk to myself from now on because I must be stating my views quite poorly.
     Jack is actually pretty straightforward. He just peppers his comments with a bit more sarcasm than most people can handle calmly. Hey, that's just Jack, and his comments give me a grin more often than not.
     If anyone wants to discuss what I said, e-mail me and we'll talk about it that way - no problem. Now, back to the heart forum. By the way, all comments on the topic of depression are welcome here, but please try to relate it to heart disease in some small way, like Mary Lou (and hopefully, I) did. Whew! Text is a hard way to communicate, you know? Jon.


Brad T, August 27, 2001 - Hi, I am a 27 year old man who has been experiencing shortness of breath for several months now. I don't sleep very well (I've always been a night owl) and I've been feeling fatigued lately as well. I quit smoking about 4 months ago and have been able to exercise since then, but when I'm at rest I'm almost always short of breath and my at-rest heart rate is usually around 85. I've undergone pulmonary function tests and was diagnosed with asthma, but I haven't responded to asthma medication. I'm now concerned that I may have the early stages of CHF. I don't have any noticable swelling in my feet or legs, but sometimes I feel bloated in my upper abdomen. Neither my PCP nor my pulmonologist has sent me for any heart tests. Do I have reason to be worried about my heart and should I bring it up to my doctors? What diagnostics would they run to rule out any heart problems? Advice is appreciated. blt74@yahoo.com


Jon's August 27 reply to Brad T's August 27, 2001 - Hi Brad, A chest x-ray is useful if: 1) Your doctor is on the ball at reading them (most are not) and 2) if there is a previous chest x-ray of you to compare it with taken in the past 2 years.
     Otherwise, you should really get an echo to check for heart disease. An EKG (ECG) is not an acceptable subsititue. Jon.


Jon, August 27, 2001 - Hi everyone, I am sorry to say that Donna Z died Saturday night. I received this from her daughter Kristen today - it is meant for everyone here:

     It breaks my heart to tell you that my mother, Donna, passed away the morning of August 26th. She went to sleep Saturday night and never awoke Sunday morning. My sister and I found her and performed CPR, but she was gone. I miss her so very much already. I thank you for all the support that you had given my mom, and to all those suffering from CHF. My mom will be missed by many, but I keep telling myself that she's in a better place. Any sympathy cards, etc,..., should be mailed to:
     Founds Funeral Home
     c/o The Zak Family
     229 South High Street
     West Chester, PA 19382
There will be a service on Thursday, August 30th at 10:00 AM. Thank you again for your support. Please keep my mother in your thoughts and prayers.

Jon.


Jan R, August 27, 2001 - Hi, Can anyone recommend a good mind/body connection book, particularly one that has anything in it about CHF, cardiomyopathy, or just heart problems in general? I am still trying to work on my attitude and good books seem to help, but I could use a recommendation.
     Also, after reading through the recent comments on depression and fibromyalgia, I am reminded that my own CHF diagnosis is based on nothing but a vague description of fatigue on climbing stairs, plus the fact that I have cardiomyopathy. As Jon has pointed out and as many of us know, doctors are often right, and often wrong. We must educate ourselves and take great leaps of faith in trusting the medical folks. Jan R. therowlands@att.net


Mary Lou L, August 27, 2001 - Hi all, Several days back we were discussing vision problems where visual fields were interrupted by temporary loss of vision. I had an appointment with my neuro doc yesterday regarding peripheral neuropathy, from which I suffer. I told him about my ophthalmologist's diagnosis of "optic/ocular migraine." After asking several questions (one eye, both eyes, headache, no headache, pain, no pain, classic migraine aura or no aura) he said he is tentatively thinking more along the line of TIAs or even a slight seizure-like activity. If and when this happens again I am to call him right away. I got the same instructions from my ophthalmologist; two places at once? <g>
     I've put his dialogue into my words. The area of the brain controlling vision lies in back of the skull. Two small arteries in the neck supply blood to this area; they start out being about an inch apart (he showed the distance between his thumb and forefinger) then merge at the back of the skull to become one. This ocular twig (too small to be a branch) supplies the blood. When this supply is temporarily interrupted, it can be a TIA, with the visual disturbances we were talking about earlier.
     While it's easy to do a Doppler exam of the carotid arteries, the smaller ones that supply the eye cannot be done this way. An angiogram would be the definitive test and he will have this done if I continue to experience vision changes. Since an angiogram carries certain risk factors, he prefers to be conservative. I love Jesus, Mary Lou. MLBinks@aol.com


Frank S' August 27 reply to Jon's August 25, 2001 - Hi Jon and All, My impressions of the Abiocor implant are that if the recipient hadn't had one foot in his coffin, the procedure may have been more helpful. Eventually this artificial heart may be just another tool to keep the very ill heart patient from checking out prematurely. I was more interested in a procedure in Germany to implant a patient's adult stem cells from his own bone marrow into his failing heart. Wow! If this proves effective, I'll stand in line to buy a ticket because this makes a lot more sense than other procedures which may be available in the future, in my opinion. :-) Later, Frank. fmsmith@inreach.com


Bill B, August 28, 2001 - Dear Jon, In Texas, two young football players have died in the past 30 days: 14 year old Leonard Carter of Houston and 15 year old Steven Carter of Luling, Texas. They died after football practice. The official cause of death was ruled to be Hypertrophic Cardiomyopathy in both cases. There are so many young people dying now in simular cases across the country. I have e-mailed a local news station - www.kvue.com - that the time for the old turn your head and cough physical is no good anymore. These kids need to be protected more. At least it should be mandatory to run an EKG and an echo on these children before pushing them to the breaking point on a football field. The parents, coaches, and the whole country should be better educated about CM. HCM really hits close to home with me because of the obvious - I have it. They won't let these kids pray at the games, at least they could take better care of them. Okay, so much for my soap box speech today. Of you that read this please include these folks in your prayers. I would welcome any advice on how to get some attention from the AHA to put some pressure on schools to better screen players for possible heart defects and save some of these kids' lives. God bless, Bill B. fedx44@yahoo.com


Jon's August 28 reply to Bill B's August 28, 2001 - Hi Bill, I wonder if more teens are dying on pratice fields or if we just hear about it every time now, and didn't used to hear about it unless it happened literally in our own town. Kids are in much worse physical shape these days than in the past so they tend to put more strain on their hearts when jumping into an athletic program as well. I think stringent basic physical fitness requirements prior to athletic program participation would be a good start. This might help some problems be spotted before exertion reached a stage that could be lethal to someone with undiagnosed HCM.
     An EKG is probably a good idea - good thinking. Just make sure you stress it must be read by a practicing cardiologist, not an academic, PCP, or nurse of any kind! An echo is such an expensive procedure that I think most local athletic programs would simply have to fold if they were required. If private insurance allowed it, rates would skyrocket all over the country for everyone, including elderly people on fixed incomes, so I couldn't support that.
     I'm not trying to rain on your parade, honest. I just want to point out that good intentions require a huge amount of thought, research, and planning to put into realistic practice. Just creating this web site and making it work took years of constant changes, hair pulling and teeth gnashing on my part, and this is a relatively simple venture. You would not believe the number of hours spent researching - per article that shows up on my pages.
     I'd suggest talking to some experts on treating HCM - clinical practitioners who manage HCM patients daily, not academics! They can help you spot practical solutions and maybe even help you bring them to fruition. Organizations like the AHA tend to get bogged down by bureaucratic inertia and good intentions can lose their real-life effectiveness along that path. I do have a bias about the AHA, which I'll state here so you know I am not impartial. They asked me a year or two ago what would help patients the most, wanting my suggestions about how to make their new online CHF section effective. Then they ignored every single suggestion I offered. It made me question their sincerity regarding helping real people with real problems. Maybe they prefer to push paper, ya know? Then again, maybe my suggestions were no good. ;-)
     For a start, you might want to read this: Hypertrophic cardiomyopathy, Tools for identifying risk and alleviating symptoms by Michael DeLuca, MD; Tahir Tak, MD, PhD from Volume 107, Number 7, June 2000, Postgraduate Medicine. Jon.


Brad T's August 28 reply to Jon's August 27, 2001 - Hi Jon, Thanks for the advice. I don't have any older chest x-rays to use for comparison. Why doesn't an echo need a comparison as well? Does it simply pick up on things outside the norm? What if outside the norm is normal for you, or inside the norm is abnormal for you? Will I need to see a cardiologist before having an echo, or can my primary care doctor schedule one and get understandable results? I really appreciate your reply. Take care. blt74@yahoo.com


Jon's August 28 reply to Brad T's August 28, 2001 - Hi Brad, It is better to have echos done over time for comparison (to spot trends) if you have documented heart disease. See the EF page for more on that. However, to diagnose undocumented heart problems, a stand-alone echo is far more precise than a chest x-ray. The echo actually measures blood flow per beat, valve function, heart size, and much more in objective units of measure and relative measures like percentage of the whole - not by cardiothoracic ratio or CTR.
     CTR is a subjective measurement used with chest x-ray to spot heart problems. Many doctors and internists are not accurate in determining that ratio, with disastrous results for the patient. I am making a text file on this available here: www.chfpatients.com/chest_x-ray.txt.
     Please read the article at the bottom of the echo page (Reading Echo Results) for a detailed explanation of why a cardiologist experienced at reading echos - preferably your own heart doctor - should read echos, never a PCP or internist. Jon.


Walter K, August 28, 2001 - Hi, Jon posted the note from her daughter saying that Donna Zak died this past weekend. I knew Donna, not well, but well enough to appreciate what a vital, caring person she was. I first "met" her through posts on this site. We found that we lived in the same area and she guided me to my present CHF specialist and local cardiologist, the same ones she used. She probably saved my life by doing so. Donna's death may have resulted from a sudden arrhythmia. Her CHF was apparently under control. Donna started a CHF support group with the aid of the cardiologist; not a pity party group but one designed to educate. Despite her CHF she lived an active life, traveling with her dogs to dog shows and walking two miles daily. I learned of her death from the cardiologist's head nurse, who called me yesterday. That the nurse would care enough to call about Donna's death is in itself a tribute to Donna. hknoth@magpage.com
 
Jon's note: Walter promptly alerted me - much appreciated!


Pat M's August 29 reply to Sharon P's August 23, 2001 - Hi Sharon, I also just returned from a trip from Knoxville, Tennessee to Boston Massachusetts via Charlottesville North Carolina, and back. We also had delayed and cancelled flights, and even with the help pf electric carts, wheelchairs, and what not, it was exausting. By the time I got to the plane I had to walk on the tarmac to get on the plane and I was gasping like a fish out of water. My daughter also asked for some cold water and that helped after awhile. I got home Sunday and today is the first day I'm off my couch. I wonder if a bus trip is any better.
     I am newly diagnosed with CHF within the past few months and found I couldn't do the things this year that I could last year. Walking any distance is difficult for my 61 year young body. I arrived home to Tennessee 3 days ago. Since then I am coughing, getting wheezy at times and I am still SOB when doing my normal chores. My feet and ankles are , but they have been staying that way. I wondered if I picked up a cold or if I am decompensating somewhat. Has anyone had this experience? I have an apponitment in a couple of days for my blood work and I wondered if this was anything special to be concerned about. Thanks, Pat M. pmarble@tellico.net


Sandy, August 29, 2001 - Hey everybody, I had my heart transplant on April 8, 2000. I saw a book on a site that I would like to purchase about transplants, but can't find the site again and my library can't find it either. If anyone knows where I can purchase this book, please contact me. The title is "It gets dark sometimes : My sister's fight to live and save lives." The author is Jeffrey Marx. Thanks, Sandy. sandy230@webtv.net


Ginger's August 29 reply to Bill B's August 28, 2001 - Hi, I believe these is just the ones we hear about. Here in Miami they have started a blood pressure screening on all 10th graders because that is when they usually get involved in sports here. If it is even a little high, they offer them the chance to go into a trial here called the Ace Project. They do a complete heart workup. My 17 year old son is in for having slightly high blood pressure. I think all schools should do it before allowing teens to get involved in sports. The University of Miami is running it. It may be in other places, but it sure needs to be in a lot more. Maybe this will be a start for others to do it. I sure hope so. Hugs and prayers, Ginger. angelgin@bellsouth.net


Jon's August 29 reply to Ginger's August 29, 2001 - Hi Ginger, Do you know what kind of heart workup the kids get? Just curious. Does it include an echocardiogram? Family history with parent present to preserve accuracy? Cardiologist exam? EKG? Stress test? Do you know the specifics? Thanks.
     Also, do you know who pays for it all - in the end, I mean? If it's a public university, I'm thinking the odds are that it is taxpayer funded one way or another. I wonder if tax dollars should pay for physical screenings just to get into high school athletic programs - an extracurricular activity. If taxpayer money is so used, shouldn't all teens in both public and private schools get public funded heart workups, athletic programs or not? Little League? Night time urban basketball programs? Dance schooling? High school ROTC, which includes rigorous physical training? Marching band? (toting a tuba around in 100 degree heat ain't easy) Who pays for those? Any answers appreciated. I like to look at all the angles, and this issue has angles everywhere. <g>
     PS. I must be feeling somewhat better than I have in awhile - my orneriness is asserting itself. <lol> (my questions were serious, though) Jon.


Jeanette W, August 29, 2001 - Hi, I would just like to say how very sorry I am to see one of us go. It really hits home when one of our "family" passes on. Donna was a very kind and giving person who would help anyone here and give her support whenever we needed it. She will be missed very much and I know she is now watching over us and is in a much better place where she no longer has to live with this dreaded disease. Donna, you will be missed very much! We loved you! May God ease the pain of loss on your family and friends. Take care all, Jeanette. jeanette841@yahoo.com


Tracey C, August 29, 2001 - Hi everyone, My mom, who also has DCM, had her yearly echo yesterday. Her EF has remained at 30% for the last 9 years. She is homeopathic and refused to take any kind of medication at all up until 6 months ago when I finally talked her into taking an ACE inhibitor. Her EF yesterday was up to 45%. We were both shocked. At least she admits it is the meds and will continue taking them.
     On another note, I have eaten out only one time in the last year and had a really bad reaction even though I was careful. I am terrified to try again but I would like to resume living a normal life. Any suggestions or tips? I always ask the right questions, but have heard that even the salad and vegetables can be dangerous because they may be coated with baking soda to keep them fresh. Any suggestions would be appreciated, Tracey. 2tcollins@home.com
 
Jon's note: Great news about your mom!


Amelia, August 29, 2001 - Hi everyone, I haven't been online for awhile and just read the sad news about the loss of Donna Z. I pray God will give strength to her family and all of our ailing hearts. Jon and Ginger, as for the kids getting checked before school activites, I think it is the parents' responsibility to have their child checked by a cardiologist, with an echo too, when the child voices a concern to join activites, no matter what the age. It's the parents' responsibility, not the government. Well now that I put my 2 cents in, time for meds and rest. Best to all, Amelia. amelias@erols.com


Amelia's August 29 reply to Sandy's August 29, 2001 - Hi Sandy, Congratulations! You sure sound chipper and I pray God grants you many years of health and happiness. I am so happy for you and wish all others waiting that they too will be blessed with a new heart. Best to all, Amelia. amelias@erols.com


Taavi K's August 29 reply to Sandy's August 29, 2001 - Hi Sandy, Try http://www.transplantbook.com/, Taavi. kubit002@tc.umn.edu


Fred D, August 30, 2001 - Hi, At the request of my disability provider, or possible future disability provider, I went to a cardiologist in Wichita today. He was from India and required a person to interpret what he was saying. He looked over my medical records, asked a few questions, and then told me that there was no way he would state that I was disabled with a 46% EF. I asked why another cardiologist had indicated that I was in fact disabled and unable to do any type of work, and that Social Security had honored my claim. When I mentioned the other doctor, It was apparent that they were not on the best of terms, probably since they are cross-town rivals.
     The man was so adamant with his decision that I really wondered what I was doing there. He then wanted me to take a stress test, which I was able to complete. He then wanted me take a thallium test and that could not be done until Friday. I have no choice but to drive the nearly 500 mile round trip for the thallium test. He indicated that if it wasn't definitive, he would want to do a catheterization. I asked why that would be necessary when I had the procedure performed a year ago. Did he feel that I had made some miraculous recovery, and that it would be a very cold day in hell before I subjected myself to another test when the data was available from his cross-town rival.
     Needless to say, he is probably not looking forward to seeing me, and the feeling is mutual. Any thoughts on this? Why would 3 doctors indicate that I was totally disabled and this guy thinks not. Oh well, I will do what I have to do. I realize that what happens is in God's hands, but I really was bummed out after today. Also, my dog is dying of cancer and I have to make a decision to put him down tomorrow. I know what needs to be done for him but it isn't what I want to do. This has not been a good week, but I know it will get better. deal@midusa.net


Jon's August 30 reply to Fred D's August 30, 2001 - Hi Fred, I'm very sorry to hear about your dog. :-( Your doctor dilemma sounds like the "company doctor syndrome" to me. I ran into it when injured on the job badly enough to be off work almost a year. The company sent me to 5 doctors, trying to get one who would say what they wanted to hear. I was lucky and none would do so. This sounds like your problem, though - they have found a doctor (possibly eager to "make it" in the USA or unfamiliar with USA standards of disability) who is saying what they want to hear.
     Be sure to keep a written log of every visit, test and doctor's comment. I would suggest that you take notes during your visits with this guy (and all doctors), and ask him to repeat something once in awhile while you are writing - whether you need him to do so or not. That will reinforce to him that his actions and words are being recorded. It might make him a bit more willing to be reasonable and "mainstream" in his medical decision making.
     Also, I would suggest you request a letter from each of those other doctors stating in the clearest possible terms that you are disabled, and why they believe that to be the case - in detail if possible. Sample wording for the most important part of the letter is available on my SSD page. I hope this helps. You are indeed in a tough spot. Of course, I hope that you are indeed going to get well enough not to be disabled, but until (if) that happens, you may have a rocky road. Jon.


Maggie S' August 30 reply to Pam M's August 29, 2001 - Hi Pam, On occasion I have also had wheezing, especially after a trip or after eating out. My doctor called it cardiac asthma and indicated it was a sign of fluid retention, and should be dealt with right away. She said this could lead to hospitalization if not cleared up soon. I would check with my doctor to see what he says. Good luck, Maggie S. jack2@frontiernet.net


Ginger's August 30 reply to Jon's August 29, 2001 - Hi, They get a complete physical, with blood work for cholesterol and sugar, EKG, blood pressure test, stress test, echo, 24 hour holter moniter, classes with a nutritionist for better eating habits, to control blood pressure by natural methods. They do go to the parents for a complete family history. They also take the parents' blood pressures and write down any conditions we have and medications we are on. So far, that is all I know since that is as far as we have gotten. How it is funded I do not know. I know they are calling it a clinical trial for teens with high blood pressure. The point is to try to control it by natural methods. No meds are involved in this. So I have no clue how they pay for it. The University of Miami is a teaching and research school as well as a hospital. I guess if you wanted to know more you could write to the Ace Project and ask them. If you want the address let me know! Just don't shoot the messenger! <g> I agree that this should be done in a lot of places. We are lucky they are doing it here before high school kids actually get involved in sports. Some kids are involved in sports before 10th grade but in public schools here, there really is no heavy sports playing till 10th grade. I will keep you informed as I learn more. I will read through the paper work I do have and see if it says anything about how this is funded but I don't think it does. Hugs and prayers, Ginger.
     PS. In Broward County there is also a project going on where cardiologists will give school athletes a free exam. I don't know much about that as I live in Dade county. angelgin@bellsouth.net


Jon's August 30 reply to Ginger's August 30, 2001 - Hi Ginger, The safety's on. <g> Thanks for the extra info. Since this is a trial rather than a "program," odds are that it's at least partially NIH funded. Nothing wrong with that unless it is converted into a mandatory program at public schools. A single echo costs from 400 to 800 dollars without any other tests or doctor's fees. Figure this by how many students are in the public schools across the country. Ouch!
     I must confess that my point in stating how many other kids would "need" such testing besides athletes was tongue in cheek. Sorry - I can't help myself. ;-) Our health care system is designed to allow parents to pay for such tests themselves through third party payers (health insurors) and maybe we should stick to what is working; kind of working, anyway.
     I look at the dismal job public schools do at their primary job of "educating" these same kids. They fail there and will probably fail at keeping kids safe and healthy too if they take on that job. Heart screening is very tricky, heart testing very expensive and equipment not always readily available, and qualified personnel are in increasingly short supply. It makes trying to spot the one kid out of 10,000 that might have HCM a daunting task. Can it even be done? I don't know. Devising a way to spot those kids is probably going to require new technology rather than intensive use of current technology. Jon.


Julie G, August 30, 2001 - Hi everyone, This is an update on my SSD. I was denied so now I get to start the appeal process. I wonder how long that will take. My daughter works for a lawyer so I don't have to go looking for one. My husband's cousin is also a lawyer so that also leaves me another option. May God hold you in His palm, Julie G. lgoehl@dstream.net


Brandy, August 30, 2001 - Hi, Yesterday was the first day I have felt good in a very long time, so I scrubbed my house, cooked, and bathed the kids, things that are usually taken care of by other people. MY EF is good but I just usually don't feel well. Last night, in the middle of the night, I felt like I was choking on my heart. My chest felt very full and I woke suddenly in the middle of the night with strong palpitations feeling like my heart was beating about 25 times per minute, while it is always 50 beats per minute at rest. I could literally feel something "wrong," you know - the feeling of doom.
     I jolted myself and got up and walked around the house talking to God; You know, trying to refuse to die, because that is exactly what I felt like I was doing. It felt so weird. Today I am normal on my weight with no swelling but am very sweaty and can feel my heart chugging in my chest every second. I don't know what I experienced last night but if anyone has had a similar situation, I would love to know. Brandy Lee, age 21. TNBLee@prodigy.net


Joe L, August 30, 2001 - Hi all, My wife, kids, and I have decided to relocate to Orlando, Florida. My wife has an excellent job offer so we are going to make the move since she may become the primary bread winner. I was wondering if any one knows of any CHF specialists in the Orlando area or anywhere else in Florida. Any help would be greatly appreciated. Thanks and God bless, Joe. JTLucido@aol.com


Sally M's August 30 reply to Julie G's August 30, 2001 - Hi Julie, I originally applied for SSD at the end of March of this year. I immediately got a lawyer and worked through him from the beginning. They sent me to two of their doctors for evaluations and the first week of July I received a letter declining my SSD. My lawyer immediately sent in an appeal and my SSD was approved July 30, 2001. Boy, was I happy when I found out! The weird thing is that I didn't get a letter notifying me. When I got my new bank statement on August 23rd I opened it up and couldn't believe what I was seeing. There was a deposit in it for the 5 months retroactive payment. I looked at it and looked at it, and finally it registered what I was looking at. That was the prettiest thing I had ever seen on my bank statement: US Treasury 303 Social Security. It took almost 2 weeks before I finally got a letter stating that my claim had been approved.
     Julie, just stick to your guns and by all means get yourself a lawyer. I would advise anyone who is going to file for disability to get a lawyer from the very beginning. It goes a lot smoother. They know exactly what do do and say on all the forms.
     Jon, I really want to thank you for all your hard work you put into this site every day. I have only posted a couple of times but there aren't many days that go by that I don't see what is going on. God bless you and everyone else involved. You must have a wonderful wife and family. The only thing I don't agree with what you have to say is that "I have 2 cats and love them dearly!" Sally, age 57. SMeyers44@msn.com


Rick, August 30, 2001 - Hi, I am new to this. I was told I have CHF 5 months ago. I applied for SSD but was denied. I was told I have a 10% ejection fraction, cardiomyopathy, and v-tach. I don't understand the SSD decision. I went for a MUGA test on 8/28/2001 and am hoping for the best. I will tell you the results. rtd79@hotmail.com


Bill D's August 30 reply to Julie G's August 30, 2001 - Hi Julie, You should get a lawyer experienced with SSD appeal. They do it all the time. They will charge you 25% of the money you get. There are lawyers and lawyers. Some don't know beans about it. You should look them up in your Yellow Pages, Bill D. billdog11@earthlink.net


Pat Y's August 30 reply to Julie G's August 30, 2001 - Hi, I was turned down for SS disability on my initial application in December, 2000. I immediately secured a lawyer that was well versed in the appeals process. The one I chose worked well with my doctor. I qualified for SS disability during the appeals process and was notified in June, 2001. I would suggest that you make sure the lawyer you choose knows the ins and outs of applying for SS disability specifically. Good luck and my prayers are with you as you wade through the process. PTYoumans@aol.com


Wendy B, August 30, 2001 - Hi, has anyone read the cardiology newsletter on WebMd in the last day or so? There was mention of a whole new drug for CHF which seems to be having excellent results and few side effects. I read it at the office and then accidentally erased it. I think the name of the drug is Natre or Nartre or something like that. Has anyone else heard of this? It doesn't seem to apply to me because by the grace of God I'm still class one and getting better all the time, presuming I keep my occasional slips with Italian salami under control, but it certainly sounded extremely promising for people in a higher class. boozw@hotmail.com
 
Jon's note: See Natrecor on my IV CHF Drugs page


Susie T, August 31, 2001 - Hi, What is the name of the new drug that is going to take the place of dobutamine? My doctor told me we should have it by next month. I am not sure of the name but it is to be here in 3 weeks to a month. Would anyone have an idea on the side affects? Thanks, Susie. susiejot@msn.com


Jon's August 31 reply to Susie T's August 31, 2001 - Hi Susie, He probably means Natrecor. However, I doubt that it will take the place of dobutamine for people who take long-term intermittent inotrope infusions. Natrecor has only been tested for very short-term inpatient use in severely decompensated CHFers. It is primarily a vasodilator - it is not an inotrope. The major effect is low blood pressure. You can read about Natrecor at my CHF IV Drugs page. Jon.


Autumn, August 31, 2001 - Hi Everyone, I landed in the ER again today because of my sleep apnea. My throat is so swollen and sore from all the episodes that each time I wake up I feel like I have a bad case of tonsillitis and can hardly swallow. My pulmonologist says it is from the stress on the tissues from the apnea. The past 2 days my apnea is really bad because I'm so exhausted from trips to the city for doctoring. Today, taking a nap, I kept waking up feeling like my heart stopped and then it would start pounding. When I was in the ER I also asked about a 2 to 3 inch ridge of hard swelling I am having just under my ribcage on both sides. I thought maybe I am having ascites even though I am told I am no longer in CHF. I do get a light rattle in my lungs sometimes in the evenings. The ER doc said the swelling under my right side is because my liver has swollen and there is also about a 2 inch area of pain there. The left side he says definitely has swelling but he has no idea from what. Any ideas?
     In November of 1999 I had a sleep study and was told I had very mild apnea. I asked for the report and got only the doctor's dictation. I didn't know I should be able to get the actual sleep study report. Yesterday my pulmonologist told me that the doctor who said my apnea was very mild was a very conservative type and did not usually give a strong diagnosis unless things were very bad. My doctor yesterday said he read the numbers very differently than the other doctor. My current doctor said even 2 years ago I had severe apnea and should have been put on a CPAP machine, especially since I had CHF. He also says that my apnea has worsened. Two years ago the doctor averaged my apnea episodes among the whole time I was on the electrodes instead of only counting from when I first went to sleep. Yesterday I insisted on getting the the past sleep study report and I learned that in the 4 3/4 hours I was asleep I had 33 complete abstructive apneas, 116 total episodes, 80 hypopneas, and one episode of central sleep apnea. The average length of desaturation events lasted 102 seconds. I understand this to mean that on average I quit breathing for 1 minute 42 seconds total each episode. I had 9 awakenings in that time. I had almost total REM suppression.
     Yesterday when I was sent up to the sleep study lab to test if I could tolerate CPAP, or would need surgery. They told me that without apnea I might not have developed CHF and PH. The doctor 2 years ago did say in his report that I needed to get a new sleep study in 6 to 12 months but Blue Choice has refused 2 requests for another sleep study in these 2 years. I have hit deer twice in these 2 years because of falling asleep at the wheel and several times have woke up from the bumping at the edge of the road. I am so exhausted that for the past year my doctors have tried to get me to accept home health aid but that is so hard for me to do. I am to the point now that I have no other choice. I do deeply appreciate that there are people out there caring for my best interests in getting me these services. I would think it would be so much cheaper for the insurance company to supply a CPAP than the expenses like ER visits for a torn rotator cuff because I was so exhausted I stumbled, several ER visits for breathing problems or SVT, unsuccessful physical therapy for my hip bursitis because I can't lie in other positions so the bursitis never gets a rest, to say nothing of the extreme expenses to come if I end up in severe CHF and PH, or the possible major expenses of a severe accident. The doctor says that insurance fights sleep studies and CPAPs as long as the patient allows them to get away with it.
     I have contacted Protection and Advocacy but we have not met yet. The problem is that I can no longer afford to wait the 2 months it will take to get a CPAP if I do succeed with insurance. I need to be able to get a better quality of life and I need to cut the risk of a car accident, heart failure, SVT or sudden death. The ER doctor tonight arranged for me to rent a CPAP at $137 per month. I am considering after a one month test, getting a loan to buy one so I can get one that is not continuous flow because continuous flow is a bit harder on PH. I feel very strongly that even renting one will make it much harder than it already is to win with insurance but I simply can't go on this way. I am going to talk to Protection and Advocacy and through legal action if necessary, force the insurance company to retroactively pay for the CPAP. If anyone here has had experience in struggling to get a CPAP machine, I would like to hear from you on how you handled it and how it all came out.
     I am being nice while being assertive but the struggle both with my day to day issues and dealing with things like this really tire me out. It all takes energy I don't have. I really wish I didn't have to go through the struggle with them, but wishing doesn't fix anything and I gotta do what I gotta do. It really does help to know I am not alone and that many of the issues I deal with, others here do too. Not that I wish any of this stuff on anybody. I know that my life is still very easy compared to many here. I admire the strength and spirit I see here, Autumn. AmberDawn-Blzn@webtv.net


Sheryl C, August 31, 2001 - Hi Jeanie C, The Integris Health Center group that you recommended is where the doctor who told me that Coreg doesn't affect mental capabilities practices. Another doc there is the one who wasted a year of my life by refusing to put me on Coreg so I ended up on the heart transplant list. I suggest that anyone in the Oklahoma City area use OCA doctors. My cardiologist is Mark Lawson. He not only takes time to talk to me but he knows about the latest treatments and investigates any that I mention. He also is empathetic and gives shoulder pats when he greets me in the hospital. To check out the group's site, see http://www.ocaheart.com/. [ Jon: Flash required :-( ]
     Jeanette, I also have to use a list for everything. My memory for new names, which was never very good, is totally gone now. I'd like to pass out name tags! Thanks for backing me up with your answer. sheryl_sh@hotmail.com


Mary's August 31 reply to Rick's August 30, 2001 - Hi, I first applied for disability 2 years ago and was denied. I applied for reconsideration and was denied. I had my hearing in June and am now waiting for the decision any day. The biggest difference between my first application and the time of my hearing is that I finally got a statement from my cardiologist stating I am 100% disabled, permanently. However, even that isn't a guarantee of winning disability. I have a friend who died of her disease (not heart-related) who got the denial letter from social security after her death! Go figure, Mary. kactus@voyager.net


Henry S, August 31, 2001 - Hi, First of all, again I thank you Jon for this site. I have been dianosed with CHF for about 7 months. I am now taking Zocor, Cozaar, Coreg, a daily vitamin, CoQ10, and as needed Lasix and potassium. I also take Ambien to sleep at night and usually Motrin during the night for pain. I am having trouble from chewing on my tongue during the night. I awaken with dry mouth and find myself biting my tongue. Has anyone else experienced this with your medicines? Thanks again, Henry S. hagaralso@aol.com


Jamie W, August 31, 2001 - Hi, I am new here. I was diagnosed with PPCM after having my gallbladder removed 3 days postpartum. When they were removing the breathing tube, I suffered respiratory failure and had to be reintubated. I was on a ventilator for most of the night and stayed in ICU for 4 days, unable to see either my new baby or my 20 month old son.
     Anyway, my EF was 15 to 20% in the hospital and I am told that unless things get worse, they won't repeat the echo for 6 months. I have various aches and pains that I worry about. I try to have faith in God and not worry, but it's hard, especially with my boys. The most bothersome ache I have is where I would call my diaphram. The little triangle between where my lungs meet. It doesn't hurt, really, just feels like pressure and sometimes it makes me feel like I can't breathe. My PCP guessed a hiatal hernia or inflammation left over from the ventilator, although it's been a month. Any guesses?
     By the way, Jon, you are an inspiration. The love and respect you have for God are very evident and as a new Christian, thank you. I have always believed in God and have been baptized, but I never actively sought a relationship with Him, which I am trying to change. Thanks too, for your pages, which have been very educational already, Jamie. wilhoits@gatway.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 Jon C.

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