The paperwork never ends The Archives
September 1-15, 2003 Archive Index CHFpatients.com

Kate's 9-1 reply to Diane M's 8-27     possible itching solution
 
Jon 9-2     a little behind right now
 
Sharon 9-2     possible itching solution
 
Cat 9-2     is anyone else lightheaded?
 
Jon's 9-2 reply to Cat's 9-2     lightheadedness
 
Jamie 9-2     what does APN mean?
 
Nancy S' 9-2 reply to Joy K's 8-26     thank you, update
 
Tom R 9-3     EECP trial still enrolling
 
Tracey C 9-3     seek living info about some states
 
Kathy 9-3     what can I take for bipolar disorder?
 
Monica 9-3     update - not good
 
Greta's 9-3 reply to Sharon's 9-2     MSG, salty foods and more
 
Kathy 9-3     update
 
Krista L's 9-3 reply to Pam L's 8-23     my transplant experience
 
Jon 9-5     all kinds of news
 
Nancy S 9-5     low sodium diet resource
 
Joy K's 9-5 reply to Jamie's 9-2     nurse practitioners
 
Sheryl C 9-5     seek ideas on travel and diabetes
 
Caitlin W's 9-5 reply to Cindy's 8-31     I meant echo, and more
 
Jim I 9-5     seek heart pump (lvad) experiences
 
Jon 9-12     well, I think I'm back
 
Karen K's 9-12 reply to Jon's 9-5     congrats, testing questions
 
Jon's 9-12 reply to Karen K's 9-12     my improvement, testing
 
Pat Y 9-12     am glad you're back
 
Jon's 9-12 reply to Pat Y's 9-12     some notes
 
Joe S' 9-12 reply to Jon's 9-5     congrats and more
 
Joe P 9-15     are these doses equivalent?
 
Ian 9-15     seek arrhythmia experiences
 
Daniel 9-15     tightening in my throat
 
Jack 9-15     does it get any better?
 
Lydia Moore's 9-15 reply to Jon's 9-12     this gives me hope
 
Jon's 9-15 reply to Lydia Moore's 9-15     I don't deserve it anymore than anyone
 
Jon's 9-15 reply to Jack's 9-15     hang in there
 


Kate's September 1 reply to Diane M's August 27, 2003 - Dear Diane, I have had some itching experience too. Mine, however, was related to an allergic reaction to my own hormones that occurred at the beginning of menopause - a real joy, as you can imagine. It took almost a year before someone came up with a prescription for Diprolene AF augmented betamethasone dipropionate. It has a special augmentation that aids in a deeper penetration of the medication. Most others just lie on the surface and don't get into the underlying tissue.
     Talk with your doctor to see if this is okay for you to use. I am on all the typical CHF drugs and it is okay for me. It is a bit on the expensive side, but if you itch head to toe there is no such thing as too expensive. Fortunately, my nightmare ended but I could never have survived without this miracle cream. Kate. tothymecottage@frontiernet.net


Jon, September 2, 2003 - Hi everyone, Posts may be slow this week. Last week was full of "heart failure days" and I put a new hard drive in last night and have to transfer tons of data to it. Toss in an invasion of ants due to the heavy rain in our area, my sound card seizing up, and my having to add hardware for DSL this week, and I'm just plain behind all around. ;-) Jon.


Sharon, September 2, 2003 - Hi, I have just had a bad couple of weeks and all I can attribute it to is the heat and/or exposing myself to MSG. Does anyone else have a problem with even a bit of MSG? I had some crackers containing it over a few days. I don't know how I missed it on the list of contents, but as time went on I had more and more palpitations; after having a very good exercise stress test, with no PVCs at all. What a change from my first test, where my cardiologist said to the nurse, "Her PVCs will go away while she's on the machine" and then what happened was that they got regular. When I got really anemic, I was having runs of bigeminy or PVCs every 2 beats. Anyway, as time goes by I have almost no PVCs again, and I'm wondering if it was the MSG. You have to be so careful what you eat. lyons@sasktel.net


Cat, September 2, 2003 - Hi, Recently I've been plagued with intermittent lightheadedness. There have been no recent changes in meds, and I am wondering if anyone else has this problem. lafsalot2000@yahoo.com


Jon's September 2 reply to Cat's September 2, 2003 - Hi Cat, I have been off and on lightheaded for a couple of weeks. At first I thought I was dehydrated but that is not the case. I may go see my doc about it since it doesn't seem to be going away on its own like it usually does. Jon.


Jamie, September 2, 2003 - Hi Jon and everybody, This is a great web site! I was in to see the doctor and he had a person who took the history, blood pressure and heart rate. She introduced herself with her fisrt name. I assumed that she was a nurse but she also wrote the prescription. She has APN after her name. I was wandering what APN means? jamlevan@sprintmail.com


Nancy S' September 2 reply to Joy K's August 26, 2003 - Hi, Joy, Thank you for the information you gave me. It was really helpful. I'm on the mend and my husband is doing great. We're going for a checkup today for him and I know it will be good. Thanks to all who prayed for him as I know that was the most important factor in his recovery.
     Thanks again Jon, for providing us a warm place of comfort and a huge amount of knowledge. Without you all, I don't know where I'd be now. I don't post often but it's so helpful to come here and read about others. Nancy. ns1@alltel.net


Tom R, September 3, 2003 - Greetings all, A heart failure study with EECP, Enhanced External Counterpulsation, is still recruiting patients for participation from over 30 research centers around the country and UK. Patients receive either best usual medical care or best care with EECP. All related services are free for patients. Your LVEF must be 35% or less, and you must be class 2 or 3, and be willing to participate in all study visits. You can e-mail me for more info. Best regards, Tom. thomasriedman@yahoo.com


Tracey C, September 3, 2003 - Hi everyone, We're considering moving from California to Oregon or Washington. I am hoping to receive some input from those of you who live there about cost of living and healthcare, and about weather as it relates to CHF. Thank you. 2tcollins@cox.net


Kathy, September 3, 2003 - Hi, I have a question that I haven't seen addressed here. I have bi-polar disorder. My moods have been stable for about the last 3 years, but I am noticing some worrisome symptoms. Previously I have taken lithium, but I read very briefly that it is contraindicated in CHF? Why? If I can't take lithium, what can I take? I have not been successful with SSRIs but some of the older antidepressants combined with lithium have been very successful for me. So what do I do now? kathyh@linkny.com


Monica, September 3, 2003 - Hi, Well, we have the test results from my thallium stress test and it's not good. I have another blockage above where they bypassed one in 1999. They say its about 75% or more blocked. I am having a cardiac cath the 19th to see if they can stent. If not, they are going to do another bypass. I had a blood test yesterday to see if I show markers for CAD. If so, then my kids will be tested to see if they have them also. If they do, they will start meds to help prevent hereditary CAD.
     My EF is about 35%, give or take some. They also said my heart is weakening and this concerns them. They are going to try EECP where they do blood pressure cuffs on legs once per treatment for 7 weeks. If that doesn't work my name will be put on a heart transpant list. I'm so scared about all this. I don't want to be opened up again but if I have to, then I will. From here untill the 19th, I have to take it easy. I just wanted to update all. God bless, Monica. monicawhalen@hotmail.com


Greta's September 3 reply to Sharon's September 2, 2003 - Hi Sharon, Yes, MSG can really mess you up. MSG stands for monosodium glutamate. See that word in the middle: Sodium? That is salt and oriental food is prolific with it. I love that type of food but like so many of the foods I love (pizza, Mexican, etc.) I have to steer clear of it. Put that type of food on your no-no list. It tastes good, but the after-effects are not worth it.
     Jon, I am so glad to see you up and running again. I missed reading new posts daily. I'm sorry you have had such a bad time lately. Remember what Scarlet O'Hara said, "After all, tomorrow is another day." Blessings, Greta. gjohnson@arkansas.net
 
Jon's note: That's a good one. I like Paul's "But though our outward man perish, yet the inward man is renewed day by day."


Kathy, September 3, 2003 - Well hello everyone, A couple of months ago I went in to get 2 valves replaced - aortic and mitral. The mitral was a last minute decision made by the surgeons on the spot. I was released 2 weeks later and 2 weeks after that I was back in the hospital for internal bleeding, almost to the point of dying, from an ulcer. I needed plasma and much blood. Two weeks after that I was in the hospital again for another surgery to keep liquid out of the sac under my lung, which kept filling from the lung machine that kept me alive from the first surgery.
     It's been a long haul and it's far from over. I still swell but with no other symptoms of CHF, so I am allowed to eat a little more normally, although many foods just taste too salty to me after a year of having CHF so now now I stay away from a lot of them anyway.
     I just wanted to say hello to everyone and let you know I made it. I guess aside from the setbacks, I can honestly say I feel better and am not short of breath. I only take one water pill when I need it and that is better than having to depend on them totally. I pray that all of you can find the answers you seek and come out with good news to share with all of us.
     I will be on Coumadin (warfarin), because my choice of valves was mechanical, and that was because of my age. Mechanical valves last longer and that is better than another open heart surgery. Today I was informed that my blood was too thick and I was in danger of a stroke, so over the phone I was instructed to give my self a blood thinning shot. It was like landing a jet without the pilot. <g> Not quite, but I was scared. Ah well. You all take care, Kathy. ksugars@comcast.net


Krista L's September 3 reply to Pam L's August 23, 2003 - Hi Pam, I am sorry to hear of your son's problems. I received a new heart in February of 2001 at the age of 25. I had suffered heart problems since I was 13 years of age, including tachycardia and cardiomyopathy. Eventually I suffered from CHF and after trying every medication, cardiac rehab, and a biventricular pacemaker, I was put on the list.
     You asked if I would do it again. Definitely! I was at the point where I was on constant IV medication and could barely walk around hospital corridors without stopping and catching my breath. I could tell a difference in how I felt the minute I woke up with my new heart.
     Taking the meds has really just become part of my daily routine. The number of meds a person takes typically decreases over time. I started out with about 10 different presciption medications and a variety of supplements, and am now down to just 4 prescription meds. I take fewer meds now than I did when I had CHF.
     As far as being subjected to other illnesses, that's just something you have to be careful about. Like Natalia said, washing your hands is crucial. I still work full-time and am working on my graduate degree. I also work out at the gym at least 4 times per week and do just about anything I want. You just have to know what situations could potentially expose you to something harmful. For example, swimming in the ocean or dirty water could be dangerous, and the medications make you more prone to skin cancer, so you have to take steps to avoid harmful situations.
     As far as hospital stays go, I see my cardiologist just once a year now for an annual biopsy. Initially, you have a lot more, as Natalia wrote. Overall, my life has improved greatly since my transplant because I am able to do things that I couldn't do for a long time. I know another transplantee who received her heart at age 21 and recently celebrated her 11th transplant anniversary. In addition, she's participating in a 700 mile bike ride around Texas to promote awareness for organ donation. There will definitely be challenges, but there are also a lot of rewards for many people. Best of luck, Krista. kristalosey@hotmail.com


Jon, September 5, 2003 - Hi everyone, I'm full of news today. ;-) I spent the morning setting up DSL service and actually succeeded, so no more down time due to Internet worms. This afternoon and part of the evening I spent at Doctor Porter's, my CHF doc. Well, 9 years after diagnosis, my heart function finally tested normal by echo. I was floored. My heart is still enlarged so I am far from well, but it's amazing progress. We are tapering my diuretic to zero over one month to see if that is contributing to my fatigue. I'll get posts caught up before the weekend is over.
     Unfortunately, I don't know what is wrong with the site - it just started going whacky on me and I can't get onto my server to get it fixed. I am working on it. Jon.


Nancy S, September 5, 2003 - Hi, I just found this daily diet tracker for low-sodium diets and thought some of you may be interested in it. If it's already been mentioned, I apologize: http://organizedhome.com/notebook/printables/medical/dailydietna.html. Nancy. ns1@alltel.net


Joy K's September 5 reply to Jamie's September 2, 2003 - Hi Jamie, APN is a Nurse Practitioner. Prior to becoming a Nurse Practitioner, a nurse must be a graduate from a 4-year nursing degree program. Nurse practitioners usually attend a further 2 years of college. The college program (courses and clinicals) specializes in the training of becoming a Nurse Practitioner. There are several areas of specialties within each program to choose from. Joy. Pjkachel@aol.com


Sheryl C, September 5, 2003 - Hi, Does anyone have helpful hints about flying with insulin and syringes? cvprehab@hotmail.com


Caitlin W's September 5 reply to Cindy's August 31, 2003 - Hi, You are so right - I meant echos. I noticed after I put it up. I get another one this week to track a mitral valve leak. I want to be able to understand my numbers. Since I last visited here, I found an online article from the American College of Cardiology and the American Heart Association. It is called something like guidelines for heart valve patients. It is at http://www.acc.org/clinical/guidelines/valvular/dirIndex.htm. Anyway it has 93 pages of readable information, for each and every valve, including their opinions of what these measurements should be. Bless your heart, Caitlin. caitlin@thestraight.com


Jim I, September 5, 2003 - Hi, I am curious if anyone has a HeartMate heart pump. My dad will be getting one of those implanted on Monday. I am just curious about experiences, pros, cons, etc. Thanks for your help. jiminmanjr@yahoo.com


Jon, September 12, 2003 - Hi everyone, Well, it's nice to be back or at least sort of back anyway. The short version is that my servers crashed and my web host had a heart attack all on the same day so I was locked out of my domain. Since he was in the hospital and I did not know it, there was no way for me to contact him to even know what was happening. To make it worse I could not transfer my domain to a new host because my old one had it locked. I am now on a new host and the site is sort of running.
     My search engine is still not running right. I am also having some forms problems and some e-mail problems still but am sweating bullets trying to get everything fully functional, aided by large doses of music at high volume - I really am a child of the 70s, I guess. <g> Please be patient. I apologize in advance if your message gets lost - I think a couple of hundred did, at least.
     I will have a chat room running within about 2 weeks unless something else unforeseen comes up. I will host the chats myself. Also, is anyone interested in a public FTP section where unedited articles and images and such would be available for anonymous download? Please let me know at jon@jonsplace.org.
     Again, I am sorry for being out of touch - it was one of those situations where there was nothing I could do. A thank you to Captain Jack for checking in with me by phone! Jon.


Karen K's September 12 reply to Jon's September 5, 2003 - Hi Jon, What wonderful news! I would be ecstatic if given that information about my heart, although I do know I am well compensated so I can't complain much. I transferred from a doctor of internal medicine about 2 years ago and became a patient at the CHF Clinic at the University of Iowa Hospitals. I'm being seen once every 6 months. The last time I had an echo or MUGA was several years ago. Should this be something done on a scheduled basis or if there is no obvious decline in condition do they tend not to do the test because it is a bit costly? I've also never had a Vo2max test or stress test that many of the folks here talk about. Is this something that should be done as well? Again, congrats! Karen K. karenk@machlink.com


Jon's September 12 reply to Karen K's September 12, 2003 - Hi Karen, As my daugher said when I told her about my echo results, "I'm really not sure how to process this." I am still dead tired and short of breath, and still fight insomnia constantly. I have increased my exercise routine a bit and don't have to worry as much about sudden death but still am not sure what the heart function improvement will actually mean to me on a daily basis.
     Vo2max tests are usually not done on stable, compensated CHFers. In my opinion - and I have nothing official to back this up - every CHFer should have an annual echo to check heart size, valve function, and EF, at least. Jon.


Pat Y, September 12, 2003 - Hi, Thank goodness you are up and running. I was concerned that a worm had made getting back on so difficult that you had decided to discontinue this web site. My second thought was that something happened to you. Recently I was talking to two nurses as we waited for a doctor. One had extensive experience on the heart ward in our local hospital. During conversation she commented on how much I had educated myself about CHF. I gave much of the credit to you and this web site. Thank you for all you do for all of us. PTYoumans@aol.com


Jon's September 12 reply to Pat Y's September 12, 2003 - Hi Pat, I would find a way to let everyone know and I would remove the message board if I was going to stop updating the site. I just installed ADSL broadband and now have a spam filter on my server as well as my computer to help defeat slowdowns from worms. My wife has instructions to inform everyone if something happens to me and my daughter knows to do so if something happens to my wife and me. Jon.


Joe S' September 12 reply to Jon's September 5, 2003 - Hi Jon, That is absolutely fantastic. Praise God He heals us. I got good news this week too. My aortic valve is as close to perfect as it can be. My BP is down, cholesterol down, etc. However, I will have to take a diuretic for the rest of my life. I ain't no young pup like you and I won't have enough time left to have my heart and lungs go back to normal after 60 years of growing to compensate for its bad valve; but who cares?! I can finally walk up hills, drink a full glass of water without gasping, etc. Hey, I'm almost normal, I think. jes@gbis.com


Joe P, September 15, 2003 - Hi, The cardiologist changed my medication from 25mg Toprol (short acting), to 3.15mg Coreg to be increased to 6.25mg in two weeks. How do the doses compare; is the 3.15mg equal to the 25mg of Toprol? jsp@myway.com


Ian, September 15, 2003 - Hi everyone, I was diagnosed with IDCM a year ago and after a minor surgery to correct atrial flutter, I have felt fine. My readings are pretty normal except for a very irregular heart rhythm, which I think I've always had. My consultant now thinks I should have a pacemaker because my heart slows down sometimes, although I do also get spells of faster palpitations. Does anyone have any experience of this? I have no idea if this makes my long-term prognosis a lot worse or if things are going relatively okay for me. Best wishes to everyone out there! Lleweli@aol.com


Daniel, September 15, 2003 - Hi, I would like to thank Jon for his personal reply and for the privilege of participating in this forum. I am not well compensated and I am still in the preliminary stages. I will be examined by a CHF doctor with an echo in 2 weeks. This will be my second opinion, you might say. I have an ejection fraction of 10%. The doctors keep cautioning me that this is a life-threatening illness, but it does not seem like they are in any hurry to perform a right and left heart catheterization although it is required to get on a heart transplant list.
     Both my cardiologists have stated so far that this would be imperative for me to pursue a transplant. My question of the day pertains to my symptoms. I seem to frequently get a tightness of my throat - a constricted feeling. However it comes and goes, sometimes lasting up to 2 days. I am trying to determine if it is a reaction to medication, a physical symptom of impending problems, salt, or what. I would appreciate it if anyone has a opinion on this and replies. I have many unanswered questions and this has been a wonderful source of information. Thanks again, Dan. cyclenut@maplenet.net


Jack, September 15, 2003 - Hi, I am 28 years old and was diagnosed with CHF in March of 2002. Over the past 10 months I have lost a lot, financially, physically, and mentally. I am having to deal with the county that I live in for help to get my meds, and it's no easy task to do so. Physically, it takes everything I have just to get up in the morning. I have no money, a very limited income, and no one to help me. My family has left me and disowns me because I can't work.
     Can someone please tell me that it gets better? I pray to God and look to Him for guidance, but things seem to get worse for me. People always want to tell me to have faith, but it's hard when I'm lying there and can't breathe and can't afford to pay a copay for the medication I need.
     I'm trying to get SSI and SSD but the waiting game may kill me. Sometimes I think death may be a better option than life. What am I to do, or is there anything that I can do? Am I forced to just sit here and fade away? Can anyone help me? Thanks for any and all comments. Jack. jwl10874@aol.com


Lydia Moore's September 15 reply to Jon's September 12, 2003 - Hi Jon, I am so excited to hear of your progress; it gives me hope. You must be doing something right, physically, mentally,and emotionally. Most of all, I truly believe you are doing all the right things spiritually. You have and still are, working so hard on this site and you have given us such a gift. We all have a connection to you and each other. This site has given us a community of people (family, if you will) that supports all of us. There is a real sense of love and concern for each and every person, and there is so much information we would not have known about if it were not for this site. Jesus has blessed you and in turn has blessed us all. Thank you for your gift of caring. In Jesus' name, Lydia. Flanders66288@cs.com


Jon's September 15 reply to Lydia Moore's September 15, 2003 - Hi Lydia, Thank you for the kind words. However, I have come to realize that our circumstances are rarely tied to how "well" we are doing spiritually. God's love does not waver with our spiritual progress and He acts in our lives to achieve His purposes, not to reward or punish us. If spiritual progress were the measuring stick, I'd be in deep trouble, indeed. ;-) Jon.


Jon's September 15 reply to Jack's September 15, 2003 - Hiya Jack, You might want to add an initial to your name so you don't get confused with Madd Jack. <g> Yes, it can definitely get better. I can't promise you that it will or when but it certainly can. It took me 14 months plus to get my Disability so I identify with your struggles.
     I don't know if you are a Christian so I am unsure how to reply to your spiritual struggle. If you are, maybe this will help - or maybe not.
     Jesus said, "In the world ye shall have tribulation." The apostle Paul said, "We are troubled on every side, yet not distressed; we are perplexed, but not in despair; Persecuted, but not forsaken; cast down, but not destroyed." He faced constant pain because God refused to heal him. Paul was whipped, stoned, and jailed. Yet he knew that Jesus had not abandoned him and that pain is part of this life.
     He went on to say, "For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day." One way you can help that inward man of yours stick with it is to do as Paul said, "this one thing I do, forgetting those things which are behind, and reaching forth unto those things which are before (ahead)."
     I buried my father after a long bout with cancer and my dog died in May. My mother is developing Alzheimer's and my daughter has a chronic illness. Despite my improved heart function, my heart is more enlarged than it has been since my diagnosis 9 years ago. My wife has a heart condition also. I am about to lose my Disability pensions and all my health insurances. My wife's job is gone at the end of this year. Yet I tell you with absolute certainty that God loves me with all His heart and continues to care for me with tenderness and mercy.
     Is faith misplaced because we don't see the results we want when we pray? God has not done anything bad to us. This life is not meant to be easy and that's our choice - any of us would have failed the temptation that caused our fall in the garden and we all know it. Paul said, "I have learned, in whatsoever state I am, therewith to be content. I know both how to be abased, and I know how to abound: every where and in all things I am instructed both to be full and to be hungry, both to abound and to suffer need. I can do all things through Christ which strengtheneth me."
     Life can be terribly hard. That doesn't mean it won't get better and it doesn't mean that we should forget what's good about life when so much of it turns sour for awhile. Hang in there, look forward, have your attitude ready to enjoy it when it does. ;-) Jon.


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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