The paperwork never ends The Archives
August 1-15, 2002 Archive Index CHFpatients.com

Michael S 8-1     staying low sodium and more
 
Ken Noetzel 8-1     IRA retirement accounts question
 
Larry's 8-1 reply to Valerie R's 7-31     low sodium recipe web site
 
Ruthie A 8-1     thanks to all, great news!
 
Nancy S 8-2     thanks Sharon and Lane
 
Judy A 8-2     seek cardiolite stress test experiences
 
Judy A's 8-2 reply to Jacky's 7-31     medical records & radiology films
 
Dave K's 8-2 reply to Ken N's 8-1     I would see an attorney immediately
 
Kate's 8-2 reply to Jimmie B's 7-30     eating low sodium
 
Bob 8-4     has anyone had their sternum removed?
 
Anita 8-4     seek transplant and disability experiences
 
Cindy 8-4     medical records and test results
 
John H 8-4     recovering from heart transplant
 
Jimmie B's 8-4 reply to Kate's 8-2     where can I buy that sea salt?
 
Natalia's 8-5 reply to Anita's 8-4     heart transplant Social Security issues
 
Jon 8-5     low-carb, low sodium recipes
 
Jack D's 8-5 reply to Jimmie B's 8-4     fact about salt
 
Sheryl C's 8-5 reply to Jimmie B's 8-4     fact about salt
 
Jacky 8-5     Lasix with food and Coreg dose question
 
Jon's 8-5 reply to Jacky's 8-5     Lasix with food and Coreg dose
 
Larry 8-5     salt substitutes
 
Kate's 8-5 reply to Jimmie B's 8-4     sea salt
 
Ken's 8-5 reply to Jimmie B's 8-4     sea salt and more
 
Tracey C 8-5     needing to share this
 
Jim I 8-5     dry heaves and insomnia questions
 
Jim I's 8-5 reply to Jacky's 8-5     Coreg experience
 
Tom S 8-7     sea salt and more
 
Jon 8-7     just venting a bit
 
Valerie R's 8-7 reply to Larry's 8-5     salt substitute experience
 
Joe S 8-7     relating everything to CHF
 
Greta 8-7     salt, sodium and more
 
Karen K 8-7     update and prayer request
 
Shelia 8-7     seek similar experiences
 
Judy A's 8-7 reply to Cindy's 8-4     thanks for the great tips
 
David T 8-8     seek CHF doc in Wisconsin
 
Valerie R 8-8     pacemaker and a-fib questions
 
Jon's 8-8 reply to Valerie R's 8-8     I hope others reply
 
Greta 8-8     Lasix and RLS
 
Jacky 8-9     BNP and heart class questions
 
Jon's 8-9 reply to Jacky's 8-9     BNP and heart class
 
Pat Y 8-9     difficulty swallowing
 
Thomas 8-9     what can I expect from hydralazine?
 
Lorraine's 8-9 reply to Valerie R's 8-8     setting pacemaker with echo
 
Valerie R 8-9     making tough decisions
 
Valerie R's 8-10 reply to Jon's 8-9     valve jobs
 
Valerie Y 8-10     why do I feel okay?
 
Duane C 8-10     welding with an ICD questions
 
Valerie R's 8-11 reply to Valerie Y's 8-10     came as a surprise to me
 
Joseph P's 8-11 reply to Duane C's 8-10     welding experience with ICD
 
Jim 8-11     seek ideas about son's illness
 
Kate's 8-11 reply to Valerie R's 8-10     making tough decisions
 
William B 8-11     intro
 
Marian V's 8-11 reply to Greta's 8-9     restless legs experience
 
Greta's 8-11 reply to Valerie Y's 8-10     feeling good despite CHF
 
Sharon L 8-12     does hot weather disturb you?
 
Valerie R's 8-12 reply to Kate's 8-11     thank you and a question
 
Jim I 8-12     does anyone take IV infusions?
 
Jimmie B 8-12     posts make me feel better
 
Ann 8-12     does it ever get better?
 
Kate 8-12     homemade broth tip
 
Valerie R's 8-12 reply to Sharon L's 8-12     hot weather
 
Valerie R's 8-12 reply to Kate's 8-12     low sodium broth and boullion
 
Kate's 8-12 reply to Valerie R's 8-12     transplant waiting list & more
 
Tom S' 8-12 reply to Ann's 8-12     does it ever get better?
 
Valerie Y's 8-13 reply to Sharon L's 8-12     weather and CHF
 
Valerie R's 8-13 reply to Jon's 8-12     broth and sodium
 
Jim I 8-13     questions about liver swelling
 
Jon's 8-13 reply to Jim I's 8-13     liver swelling
 
Don's 8-13 reply to Valerie R's 8-12     heart transplant experience
 
Nancy S 8-14     ICDs/pacemakers, weather question
 
Greta's 8-14 reply to Sharon L's 8-12     coping with the weather
 
Greta's 8-14 reply to Marian V's 8-11     restless legs syndrome
 
Greta's 8-14 reply to Ann's 8-12     getting it across to your doctor
 
Valerie R's 8-14 reply to Jon's 8-13     low sodium broth question
 
Jon's 8-14 reply to Valerie R's 8-14     low sodium broth preferences
 
Jim I's 8-14 reply to Jon's 8-13     seeing a CHF doc soon & more
 
Prentiss G's 8-15 reply to Jacky's 8-14     trial experience
 
Nancy S 8-15     prayer request
 
Ann H 8-15     why use a heart failure specialist?
 


Michael S, August 1, 2003 - Hello to all, To start with, good news: My echo was the same as a year ago. My CHF specialist says that is a good thing and my heart has stabilized at roughly 34% EF.
     To Jimmie, I wish you all the luck in the world with the sodium. Beans tasted horrible for a year and a half until I started using homemade chili powder along with a low sodium recipe I found in the aforementioned heart association cook book. The thing that keeps me from doing over 2000mg sodium are the same things that caused me to lose almost 100 pounds, start exercising 4 to 6 days a week, and quit smoking 3 packs of cigarettes every day. Those things are: I do not ever want to spend 9 days in danger of sudden death again, I like breathing, I know God is real, and since I was never around to see my children grow up and am now reunited with them [a long story] I dearly want to be here for my grandkids.
     To Jacky, I live in Oregon and no doctor, including at the VA, has charged me for records since HIPPA was instituted, or even mentioned doing so. God bless all, Michael. michaels@grantspass.com


Ken Noetzel, August 1, 2003 - Hello, I return to Jon's Place after an absence of years. You can locate my name and history over in the Who's Who section. I have been one of those CHFers (EF=15%) who could still mow the lawn and mostly lead a normal life, if not able to obtain steady work and benefits or health coverage of any type. Then in January, chest pain and SOB arose anew after years of absence.
     If you are thinking pulmonary embolisms - Bingo! However, the doctors did not hospitalise me until July 10 and even then it required 3 days of tests before they declared, gee whiz, we found pulmonary embolisms. So now the damage is pretty solid and once I have a means to pay, I am in line for heart transplant evaluation. The process to obtain Disability has begun also. I actually obtained approval on Medicaid for Families (basically SSI, correct?) while I was in the hospital in North Carolina.
     Now for my IRA retirement account question. Does anyone have anything to contribute on this topic? The case worker had my relatives begin cashing in all my IRAs while I was in the hospital. I imagine this was because you must be totally dirt poor to be eligible for Medicaid programs. Fine, but how to handle the details?
     Like what I am thinking right now is: Cash out an IRA and the check comes to you, don't deposit the check into any account connected to you, sign over the check to a relative so they can deposit it in their accounts and they can later return it to you as cash. Later, the point is that you don't declare the cash outs as usable assets, but as using the cash outs immediately by signing out to relatives, as repayment to relatives for debt incurred in previous years as they helped you pay mortgage and such things.
     If you want to turn my name in to the IRS, then I think you haven't learned something about supporting your family with no income in America. Seriously, when you go seeking Social Services assistance and you have a mortgage and a nice home for your family, they are like, "Hey, what game are you playing here?"
     Anyone with anything to say on the subject can please just e-mail it to me direct if not wanting to post publicly. E-mail me at kennoetzel@aol.com I will be seeing you gals and guys here a lot more now that the great CHF Pixie has slammed me again, and this time slammed me good. Thanks, Ken Noetzel. kennoetzel@aol.com


Larry's August 1 reply to Valerie R's July 31, 2003 - Hi, You will find low-sodium dips plus a lot more useful recipes at: http://www.recipezaar.com/. Good luck, Larry. carolthornton@comcast.net


Ruthie A, August 1, 2003 - Hi again to everyone, Well, God still works miracles! After posting about not being able to find Edecrin and wondering what others do who are in the same boat, I received several e-mails with suggestions. Thanks to everyone who wanted to help.
     Here's the great news: I got a phone call today from my pharmacist. It seems he has a friend who is a pharmacist in another part of the state. They happened to be talking and making plans for vacation together when for some reason, the subject of my dilemma came up. It so happens that this other pharmacist had a 3-month supply of Edecrin stashed on a back shelf that no one seemed to want! He is bringing it Sunday afternoon so I can pick it up Monday morning. Wow! I was getting concerned and now all is taken care of! Yup, I struggle with faith. Ruthie A. rlaba51@yahoo.com


Nancy S, August 2, 2003 - Hi Sharon and Lane, Thanks for your answers to my concerns about my treatment. I plan to become much more agressive in my treatment and being sure that I get the attention that I need and deserve! I sometimes tend to be one of those who thinks the doctor is always right even when he doesn't explain things to me. I will be asking many more questions and know when I'm scheduled to return when I go Tuesday. Nancy. ns1@alltel.net


Judy A, August 2, 2003 - Hi, Has anyone experienced feeling lightheaded and a little spongey in the legs after an injection of cardiolite during the wait after injection before anything else is done? Has anyone had their legs just give out on them near the very end of their cardiolite treadmill stress test?
     I noticed in the December of 2001 Archives that someone had been unable to complete a treadmill test and was then given the drug-induced stress test. I was given the stress scan and then told I could leave. I don't have the results of the stress test yet, it was just done this past Tuesday. I'm just very, very frustrated that this test was an absolute waste of time and money and another such test or other type of test will be necessary because of what happened.
     I should say that this test was done at a large, production line-like, cardiovascular clinic and I never saw a doctor, only one tech. downeast@concentric.net


Judy A's August 2 reply to Jacky's July 31, 2003 - Hi, One of the two hospitals in our town charges $10 just to bring the record up on their computer screen and then $1 a page. I avoid procedures at that hospital whenever possible. However, when it is necessary to utilize their services I just designate that the procedure report be sent to one of my doctors who is quite agreeable to giving me a copy of any of my medical records I want at no charge.
     While I was at the "troublesome" hospital records department to pick up a copy of one of my records, the lady ahead of me requesting her records was also upset by the cost and told them to just send the records to her doctor and she would get the copy from him for free. She was told that the doctor could not legally give her a copy of that record, only the hospital could. Jon's note - This is not true in my state and I suspect that HIPPA makes it untrue in any state.
     I was recently told by a leading specialist I went to see for the first time not to return the radiology films I had brought with me back to the generating facility as they are destroying them after 5 years and with a chronic condition it is wise to keep them yourself to ensure their survival.
     Sadly, I found out how right he was! Previously, I had picked up these same films to take for consultation with another specialist, some of the films were 12 years old. When I picked up the films this time to take to this specialist there were no films available more than 4 years old, all the others had been destroyed just a month or so before when I returned them from the first consultation. Bummer! downeast@concentric.net


Dave K's August 2 reply to Ken N's August 1, 2003 - Hi Ken, You need to see a lawyer, yesterday - one who practices elder care law. There are things you can do or have to do but there is a right way and a wrong way, and the way your relatives are doing it. Sidewalk advice is as good as you pay for it. If your relatives are closing your accounts and transferring funds, there is a serious problem. Unless you have given them power of attorney and or are mentally incapacitated, what they are doing may possibly be called theft. I have been through this, twice. dkreifeldt@yahoo.com


Kate's August 2 reply to Jimmie B's July 30, 2003 - Dear Jimmie, The sodium war is tough. After not having had pizza for some 3 years, my husband and I treated ourselves for our anniversary last week. I had to double my diuretic for 3 days; stupid.
     Sometimes you have to use the old "big steps and little ones" approach. At least throw away your iodized salt, which contains 590mg sodium to 1/4 teaspoon, and your Kosher salt that contains 480mg sodium to 1/4 teaspoon and replace them with sea salt at 400 mg per 1/4 tsp. Then just start cutting back. Eventually things will actually begin to taste too salty and you'll know you are headed in the right direction. Sea salt is nice big crystals and I saw on television that it actually has more salt taste than other salts so a little goes a lot further.
     This is not an excuse to keep eating salt, just a way to start easing on down the road to a true low-sodium plan. Good luck. As a former 3 pack a day smoker, I know how horrid withdrawal from anything can be. Ah, if someone would just invent a sodium withdrawal patch. Kate. tothymecottage@frontiernet.net


Bob, August 4, 2003 - Hi, Has anyone ever had their sternum removed? I went in for a simple valve repair and ended up on life support. I had 3 surgeries within 2 weeks, and developed an infection that resulted in my sternum being removed. Now I'm told that the heart transplant I so desperately needed is too risky. I probably won't survive the surgery and if I do I will still have all the pain and discomfort of not having a sternum. I would like to talk to others who have had their sternum removed - and always remember to get a second opinion before surgery. baysmom1959@aol.com


Anita, August 4, 2003 - Hi, I am interested in knowing if any of you out there have been, or currently is on, disability for CHF who subsequently has had a heart transplant and is now being declared ineligible for disability benefits any longer. If so, how have you handled the decision? abcox@triad.rr.com


Cindy, August 4, 2003 - Hi,When I first see a specialist, they have me fill out their office form. On that form there is a question for referring doctor. I put my name, address and phone number first; then I put my family doctor's name. This has entitled me to any correspondence the specialist sends. If I don't receive a copy of the notes sent to my family doctor within 2 weeks, I call the specialist office, tell the secretary to please pull my records and she will see that I am entitled to a copy. I never have to go back to sign an authorization form, nor have I had any type of problems from the doctor's office.
     As far as blood tests and other tests done at the hospital, when your doctor gives you the prescription for the test (the one you take to a lab or hospital), have him write on the prescription that you are to get a copy. My doctor writes just "cc:" and my name.
     Another thing, if you want to get the actual work sheets, you must ask them before they start the test. They can program their machine to print off two copies. We pay for the tests - not the doctors - so we are entitled to a copy. Plan ahead, it has certainly helped in my case.
     In my state, my doctor cannot give me a copy of anything written by another doctor. c@yahoo.com


John H, August 4, 2003 - (This is Jon posting for John H at his request) - Hi, I'm at Shand's Hospital recoving from the heart transplant I got Friday. The doctors said that I broke some speed records here since I only waited 4 days and received a "perfectly matched" heart. I got a middle-aged female's heart, which is apparently exceptionally healthy. I'll be home in 3 to 4 weeks. Please put a post on the forum for me thanking everyone. air360@cfl.rr.com


Jimmie B's August 4 reply to Kate's August 2, 2003 - Hi, Who manufactures the low-sodium sea salt? The stuff I buy is 580mg per 1/4 teaspoon. JButler@hrblock.com


Natalia's August 5 reply to Anita's August 4, 2003 - Hi Anita, Congrats on the transplant. I had one this year too. When I was recovering in the CCU, another patient befriended me. He was on his 9th year post-transplant. He taught me a great deal during my stay. One thing he said about his SSD (he's had it all this time) is that immunosuppressive drugs limit our immune system and therefore going to work around people or in an otherwise normal environment could make him sick and put his heart in jeopardy again through a virus, whether from a simple cold to severe pneumoccocal pneumonia.
     Although I am on disability as we speak, I'm up for review in March of 2004 and I don't know if I will still be disabled. I'm 28 and doing quite well now so I might just go back to work! However, I know that "Cardiac Transplantation" as a disability under Social Security is recognized for only one year. After that, they review and reject you. Fun, huh? Especially if you're someone who has not faired too well post-surgery.
     Regardless, the SSA recently gave the public opportunity to post comments on its proposal to change the criteria for Immune System Disorders. Autoimmune disorders such as fibromyalgia, CHF and Rheumatic Fever are the ones on the current list, as well as HIV and AIDS, which are secondary immune system disorders in my opinion because the presence of the virus dictates whether your immune system is compromised.
     What to do? The deadline for posting was July 8, 2003. I posted. I e-mailed everyone I knew to post and propose that transplant patients taking immunosuppressive drugs for life be included. I also wrote every Senator who has expressed interest in the Social Security program and House Representatives on appropriation committees or campaigning for Social Security reform. Senator John Edwards from North Carolina e-mailed me back, but he was the only one to actually mention my letter and transplant experience. He said he would keep me in mind when debating. Tom Davis from Virginia also wrote back. Both Senators told me what the recent Senate achieved regarding Medicare and the Prescription Act but made no mention of the proposed changes. This proposal just made it to the House though, so I hope Congresspeople are debating as we speak. That's all I've got. I hope it helped. Natalia. natalialama@cs.com


Jon, August 5, 2003 - Hi everyone, I hope all you low carb eaters are happy with my recent progress on Kitchen Corner low-sodium, low-carb recipes. I will be adding them more slowly but now there is a much better selection than a week ago. Jon.


Jack D's August 5 reply to Jimmie B's August 4, 2003 - Hi, There is no such thing as low-sodium salt. Salt is sodium chloride. Sea salt is sodium chloride extracted from sea water. I have heard the Mis-infomercials about the special sea salt that is good for you, but it's all a bunch of lies designed for gullible people who have no need for their money and would rather believe a huckster on the radio than people who are based in reality. Face it: You cannot eat sodium!
     Get over it and change your life style instead of trying to find ways to cheat. Salt isn't that big a deal to give up, and it is very easy to eat things with very little sodium. Buy fresh fruit and vegetables, and leaves the cans, boxes and plastic bags on the shelf. maddjak@hotmail.com


Sheryl C's August 5 reply to Jimmie B's August 4, 2003 - Hi, Salt by any other name is still salt. Kosher salt, sea salt, iodized salt - it's all salt. Get it out of your house. Sheryl C, who wants a salt lick in heaven. cvprehab@hotmail.com


Jacky, August 5, 2003 - Hi, I know this was discussed a few months ago but cannot find it in The Archives. Is it best to take Lasix with food or without? Regarding Coreg, I am at 12.5mg twice a day and assumed it would be increased. However, every few days my blood pressure drops very low with horrible symptoms. There has been discussion about reducing the dose. If it is not increased, how is the benefit affected? Is it still worth taking? Jackymwb@earthlink.net


Jon's August 5 reply to Jacky's August 5, 2003 - Hi Jacky, See my March 22, 2003 post about Demadex. Yes, there is still benefit to taking Coreg as low as 6.25mg per day. How much actual benefit at that low dose is disputed. ;-) See the very last article on the Coreg page. Jon.


Larry, August 5, 2003 - Hi, There has been a lot of posts lately regarding low-sodium salts. I use Morton's salt substitute, which contains no sodium but a salty taste I like. Salt was one of the hardest things for me to give up. Good luck to all, Larry. carolthornton@comcast.net
 
Jon's note: Just watch your electrolytes if you use a salt substitute containing potassium chloride.


Kate's August 5 reply to Jimmie B's August 4, 2003 - Hi, It's not really a low-sodium product, just sea salt. I buy mine at Wal-Mart. They offer both a nice whole pepper grinder and the sea salt grinder for about $1.50 each in my neck of the woods. The added bonus of them coming in a grinder is handy.
     You can go to http://www.mccormick.com/ and use the product locator page. They take your zip code and tell you the nearest store location. I'm sure there are lots of other sea salt brands, but I prefer the convenience of this product. McCormick's is also a nice reference site for checking sodium content on all their products. Kate. tothymecottage@frontiernet.net


Ken's August 5 reply to Jimmie B's August 4, 2003 - Hi, Genuine, real ocean salt is over 99% sodium chloride. Your low-sodium "sea salt" has potassium chloride and possibly some magnesium chloride added. As can be seen on Jon's web page at www.chfpatients.com/tests/routine_tests.htm, normal, healthy blood levels of sodium are 25 times higher than the potassium levels.
     I caution you to be aware that high potassium levels in your blood are just as bad as high sodium or low potassium levels! You may be getting too much potassium in low-sodium sea salt. I was cautioned by my doctor against using salt substitutes, which are usually potassium chloride. Since I am not a doctor, don't rely totally on my opinion. Please, please discuss with your doctors and review your blood tests with them! All have a nice day, Ken. Semper Fi. wilsonk@utahlinx.com


Tracey C, August 5, 2003 - Hi everyone, I just wanted to share what shouldn't be bothering me, but is. I have been posting for 3 years and just found out today that my heart failure is genetic (familial). Our blood has been in Boston for about a year being tested and they've finally isolated some cause. It doesn't change how I felt today or yesterday physically, but it's really depressed me. There are only 3 family members alive on my side and I guess this would explain it. I'm asymptomatic for the most part and live a good quality of life, and have definitely improved mentally over the years since diagnosis. This just set me back a bit today. Thanks for letting me share. Tracey. 2tcollins@cox.net


Jim I, August 5, 2003 - Hi, After months of trying to get things evened out with my dad - pacemaker/ICD, among others - I really thought I saw a light at the end of the tunnel. He was having good days in a row and was getting his strength back.
     He received another infusion yesterday, which caused a lot of problems. He was in the hospital at 7:30 this morning dehydrated; I'm assuming as much because he was getting fluid. My mom took him in because he was having some horrible dry heaving, not like the post-vomit sickness we've all probably had, but a hard wretching that would not stop. Does anyone else experience this dry heaving? Do you have any suggestions about what to do? I don't know if it's because he's lost so much weight (40 lbs), or if it's part of the CHF, or what.
     He's sleep deprived too, because of water weight and such. He can't get to sleep because he's too tired to sleep. Does anyone have suggestions for that? On the plus side, his blood pressure was over 100 today! Normally it hangs around 85 to 90, but it was at 106 late this morning. Best of luck to everyone - it's amazing how much I've learned about all of this since it started. jiminmanjr@yahoo.com


Jim I's August 5 reply to Jacky's August 5, 2003 - Hi, I know what you mean about Coreg. My dad started taking that in February and he was in the hospital a few days later. It was "call the family in" time, because the doctor's weren't sure if he could pull out of it. My dad now takes an extremely small dose. I'm not sure of the milligrams, but he takes 1/4 pill a day. That seems to help things along without compromising his blood pressure. Other people have written positively about Coreg but I understand your feelings. It can be rough. Best of luck to you. jiminmanjr@yahoo.com


Tom S, August 7, 2003 - Hi, The sea salt debate seems to get new life every 3 to 4 months on this forum. It seems to me that the same topic was covered and debated several weeks ago. Salt is salt is salt is salt. Some sea salt is less salty or seems so because it has other impurities hitch hiking along with it. Usually the lower grades of salt are relegated to highway and industrial uses while common table salt, Kosher salt and the advertising world's hyped-up version of common salt: the ubiquitous "sea salt" find their way to our grocers' shelves. There they beckon your eye and tempt your palate and obviously confuse the devil out of most of us.
     I for one use a good old iodized version along with Kosher salt. Frankly I'm not all that concerned about salt and find fatigue causes more fluid retention in my own body than any amount of salt I might ingest. I know that is heresy but I have at least stopped salting my apple slices before I eat them. Now I only salt watermelon wedges - for my dog, of course. Wait, I don't own a dog, no wonder my watermelon is so salty. Hmmm! bigheart@muchomail.com


Jon, August 7, 2003 - Hi everyone, I am sorry for no posts yesterday. Last Friday our central air conditioner died for good and later the same day my truck's electrical system had a stroke that paralyzed it! We floated a loan - ouch! - and now have new central air/internal coil/all connections, but it will be Monday before my truck gets to the shop. It was a tough week and it caught up with me yesterday, probably the exercises and cooking in the heat and humidity especially. No replies to this one, please, I just wanted to vent a bit. ;-) Jon.


Valerie R's August 7 reply to Larry's August 5, 2003 - Hi, Two of the hardest things I did when I got CHF in 1995 were to give up sodium and smoking. For a long time I joked that I would be hard pressed to choose between pizza and a smoke. Now I would choose a pizza, hands down! I have had IDCM and CHF for 8 years and have seen many, many doctors. I have been told over and over and over not to use salt substitutes. I'm hardheaded and every time I see a new one, I ask. Talk to your doctor about your salt substitute. Valerie. vgrogers@aol.com


Joe S, August 7, 2003 - Hi, This is sort of funny, but not also. Sunday and Monday I had all the symptoms of heart failure. In fact, I haven't been this sick in years. After looking at everything, it turned out it was a spider bite on my thumb. Methinks it was a hobo spider. The sad part is we all kept trying to find out how things relate to CHF and other problems. Praise God it is something that will go away. Joe S. jes@gbis.com


Greta, August 7, 2003 - Hi, This post concerns 2 subjects that are being discussed by y'all (yeah, I'm from the South): salt and Lasix. This one is to Jacky's post August 5th concerning Lasix. I have no problem whether I take Lasix with or without food.
     Now, about the salt/sodium issue. My husband is a medical tech at a local hostpital and has a minor in chemistry, and what I am about to disclose comes from him. Whether it is salt, sea salt or any other type of salt, they are all related. Using salt substitue may not be okay. Salt is sodium chloride and the usual salt substitute is potassium chloride. Sodium and potassium chloride might trigger the same type of reaction in the body. For people taking large doses of Laxis, potassium can be a problem. Potassium is excreted through the urine and Lasix can drain your potassium so have your potassium levels checked often.
     In addition to my other meds for CHF, I am taking Aldactone (spironolactone), which helps your body retain potassium. Hey, I know how hard it is to cut back on salt - I was a salt-aholic. I have been eating low-sodium long enough now that when I do bite into something salty it nearly gags me. Eating salt on our food is a habit. Habits cannot be broken and it may help to replace one with another habit. Retrain your body to a new habit: Leaving off the salt! After awhile it will become your new habit. Blessings, Greta. gjohnson@arkansas.net


Karen K, August 7, 2003 - Hi all, My husband's cousin just sent me an e-mail with what appears to be a very good site for checking vitamin, mineral, sugar content, etc,..., in a lot of foods, even by brand name. It is http://nutritiondata.com.
     I haven't posted for awhile. My husband and I separated 3 months ago. I called the sheriff's office after he pushed me down. You may not recall that he has MS. I'm not sure what is causing his mental/emotional problems but the stress became too much for me. I have to look after my own health. He filed for divorce. I haven't yet received any temporary maintenance from him and he appears to be dodging the bullet. A hearing has been rescheduled twice. The next date is to be 8/23 but I'll not be all that surprised if it isn't continued.
     I feel very badly that this had to happen. Tomorrow we will have been married 39 years. In retrospect, I should have taken this big step many years ago. I've found an apartment, am still working part-time so I do have money from my job and also from disability. Please pray for my family. Karen K. karenk@machlink.com


Shelia, August 7, 2003 - Hi, I am caregiver for my 38 year old hubby, who has CHF resulting from respiratory failure and muscular dystrophy. He is life-support ventilator-dependent for 2-1/2 years now. My question is concerning swelling of feet and legs, and blisters that are on both his legs. I have been told this is from CHF. He cannot take diuretics because his electrolytes are adversely affected if he takes more than 40mg Lasix daily. Have any of you dealt with these swelling/blisters/diuretic problems with your CHF? How are you dealing with it? Thanks! musicldy@bellsouth.net


Judy's August 7 reply to Cindy's August 4, 2003 - Hi Cindy, Many thanks for the tips. They are great! I wish I could go back and redo a couple of first time specialists visits! I sure won't forget your tip the next time any tests are scripted. Live and learn. downeast@concentric.net


David T, August 8, 2003 - Hi, This is my first post. I just found your site. I had an MI 21 years ago at age 41. I had a bypass the same year. For the next 21 years I had no restrictions and no meds except aspirin and Lipitor. I felt great, worked, fished, spent time in the boat and was beginning to think I'd live to be 100.
     Then last year I began to have a few dizzy spells. After many tests I had an ICD implanted. The idea of the ICD made me feel old and fragile. I thought a lot about what I couldn't do anymore, but I got over it until the ICD went off 4 times during a walk. Then I felt more old and more fragile, but once again I got over it.
     Now the doctors tell me I have CHF with EF of 19%. So once again I'm thinking dark thoughts. I'm sure it will pass. It helps a great deal to read about others in similar situations.
     In any case, here's my question. I've read a lot of the material on this web site and it makes great sense to me use a CHF specialist but none are listed in Wisconsin yet. Has anyone found someone in Wisconsin they could recommend, especially near Green Bay? The doctors I'm currently using I feel no real connection with. It is hard to get answers from them and sometimes I'm not sure if my cardiologist even knows who I am. Thanks in advance. debenham@core.com


Valerie R, August 8, 2003 - Hi everyone, I'm seeking knowledge and wisdom and plain old information on the resynchronization of the biventricular pacemaker. Does anyone know if it can be adjusted to work when person is at rest and then again when a person is not at rest. In other words, can the device be given 2 settings? Has anyone had theirs set with the use of an electrocardiogram? I'd really appreciate any information on this. Also, although not as important, does anyone know if a leaky mitral valve can cause a lower EF? Thank you very, very much. Valerie. vgrogers@aol.com


Jon's August 8 reply to Valerie R's August 8, 2003 - Hi Valerie, Rate adaptive pacing or "variable rate pacing" is standard in all modern pacemakers as far as I know. Pacing changes as the body's demands change. The sensor systems that track your "need" for such changes though, may be very different. Try to slog through some of this page: http://swpat.ffii.org/pikta/txt/ep/1224/007/ - this is a weird site but this particular page has in its upper section some useful information on sensor methods. PubMed also has some good trial abstracts on pacemaker parameters in heart failure patients. As far as I know, valve regurgitation can indeed lower EF; the question is how much. Jon.


Greta, August 8, 2003 - Hi, I spoke too soon. I did not have enough information about the Lasix thing when I said I did not notice any difference taking it with or without food. I backed up and looked at some of The Archive posts and realized I had no idea what the original subject on Lasix was. So I tried taking Lasix 2 hours before I eat and guess what? It did make a difference. Thanks, Jon! It is more effective that way. That'll teach me to look before I leap.
     On another subject, besides all the CHF symptoms I have to put up with, now I am having a problem with Restless Legs Syndrome. Is anyone else having this problem too? I was having the problem off and on for awhile pre-CHF diagnosis, and then it quit. It did not begin again until about one month ago. I wonder if any of my CHF medication could be making it worse. I did some research on the Net and found a study done by researchers at Penn State College of Medicine and John Hopkins University that indicates they may have found part of an answer, which has to do with receptors in the brain that will not process iron correctly. Their study suggests the patient is getting enough iron, but that a specific receptor for iron transport is lacking in patients with RLS.
     I saw my cardiologist Wednesday and my ejection fraction has risen from 20-25% to 30-35%. Blessings, Greta. gjohnson@arkansas.net


Jacky, August 9, 2003 - Hi, I never seem to think of questions in response to what the doctor tells me until I get home! My BNP has dropped in 8 months from 399 to 99 - great news! Does this mean it will stay down if I keep taking my meds? Where does this leave me with CHF? I have idiopathic dilated cardiomyopathy with an ejection fraction of 35%. I was in the class 2 - am I still? Jacky. Jackymwb@earthlink.net


Jon's August 9 reply to Jacky's August 9, 2003 - Hi Jacky, Functional heart class is based on symptoms, plain and simple. If you have the level of symptoms that fits class 2, you are class 2 no matter what test results say.
     BNP rises in response to heart enlargement and abnormal pressures so if your CHF is well compensated by meds, diet and exercise, your BNP will stay down. I disagree with the research community on BNP' role in managing CHF, in that I do not believe BNP is very useful beyond diagnosing heart failure. Our drugs often prevent further heart enlargement and abnormal pressures, thus a lower BNP level even if we are having lots of miserable symtpoms. It is of course a lot more complicated than that but that is the bottom line in my view.
     Where does this leave you with CHF? I don't like answering questions with questions, but how do you feel? ;-) Jon.


Pat Y, August 9, 2003 - Hi, I think I read on this site that a side effect of Vasotec can be difficulty swallowing. However, I cannot find this information. Has anyone had difficulty swallowing after being on Vasotec for 5 years? If so, was this a result of being on Vasotec? My difficulty has been increasing over the past 3-1/2 years. Recently I was unable to swallow for 8+ hours. I have an appointment with a surgeon for an evaluation and probably will have my esophagus examined. A barium swallow test 3 years ago indicated no problem. I am just wondering if any of you have information on this. I like to have questions prepared before seeing any doctor. PTYoumans@aol.com
 
Jon's note: This sounds like angioedema. Get a second opinion immediately about stopping your ACE inhibitor!


Thomas, August 9, 2003 - Hi all, I have been put on hydrazaline at low dose, and need information on what to expect from it at 25mg twice a day. Thomas. thomascox66@hotmail.com
 
Jon's note: mild reduction in blood pressure.


Lorraine's August 9 reply to Valerie R's August 8, 2003 - Hi, You asked about adjusting a pacemaker with EKG. My husband's doctor had the Medtronic rep come to his office and adjust the pacemaker while the technician was doing an echo. They worked together to get the best performance for him. God bless, Lorraine. gandlsimpson@msn.com
 
Jon's note: The medical literature supports using echo to get good pacer setting results, for what it is worth.


Valerie R, August 9, 2003 - Hi Lorraine and Jon, Thanks both of you. I think I would go crazy without this board. To my knowledge, mine was not set with echo and further, I need 2 settings according to a recent Vo2max test. My CRT has been turned off twice now for causing de-compensation and 3 hospital visits.
     Now I'm down to a 10% EF with Vo2max results at 11. I am not a happy camper. I treadmill every day and thought I would pass with flying colors since I feel great. Further, the director of the transplant unit has "noncommittal" down to an art and I'm not really getting answers to help me decide. All I've found out is that my post-transplant medication would cost me $20,000 a year, which I certainly hope is somewhat paid by insurance.
     I have had IDCM and CHF since 1995 and I am now 60 years old. Also, I learned I have a leaky mitral valve that could affect EF and that my heart is pretty good at rest but not at sustained activity. Replacing valve won't work, do I want a transplant?
     It's a tough decision. I have decided to try to get to target dose on Accupril, I asked which med was best for my mitral valve problems. I was only at 10mg and moved to 15mg. I decided to try to turn the CRT on again and the transplant doctor suggested doing it with echo and said 2 settings if possible, could work. Then in 2 or 3 months, I have the metabolic stress test again. All that was basically my idea and I hope I am doing the right thing. At this point, I no longer know what questions to ask. Of course, I'm terrified of heart transplant but if I have to go there, I will. I just want to be sure it's my last resort, which is very hard to believe since I feel so good! Valerie. vgrogers@aol.com
 
Jon's note: Why not replace the valve?


Valerie R's August 10 reply to Jon's August 9, 2003 - Hi, Believe me Jon, replacing the valve was a major question I asked. The transplant director feels there are two many ifs. Further, I'll still have the DCM and CHF. It certainly would be less risky and not need so many meds afterwards, but I'm not even sure my heart would make it. In any case, he said no, but I'll run it by my cardiologist too. vgrogers@aol.com


Valerie Y, August 10, 2003 - Hi, I have DCM and CHF, and am on all of the usual meds: Coreg, Lasix, Altace. My cardiologist thinks my DCM was caused by acute myocarditis, however this is not certain. My question is: Why do I feel okay? I have read so many e-mails from people who feel terrible and have near SCD episodes that I'm wondering what I'm doing differently. I was near SCD in March 2003 but since being on meds I feel the same as always. Thank you for your anticipated replies. macinroy@shaw.ca
 
Jon's note: You're not terribly unusual. I felt fine after diagnosis and starting meds for maybe 2 years before my weak heart really caught up with me.


Duane C, August 10, 2003 - Hi, Has anyone had experence with electric arc welding after having an ICD implanted? I have a project and I just can't get it welded. I tried to train a guy but it did not work. I did a little bit the other night holding a scoop shovel in front of my chest. Does anyone have a good idea how to make it work? I thought maybe the lead suits used in x-ray rooms. djclink@starband.net
 
Jon's note: See this page for Medtronic's information on arc welding with an ICD.


Valerie R's August 11 reply to Valerie Y's August 10, 2003 - Hi Valerie, I am very grateful I have not only felt perfectly fine for 8 years, but have continued teaching 8th grade English. This school year however, was tough. A cold put me in hospital and I decompensated 2 more times. I was at a 15 to 20% EF but it either dropped or was more correctly read with heart cath. Anyway, I really do feel fine. Frankly, I thought I'd pass the metabolic stress test with flying colors but I got an 11. By the way Jon, that one-size-fits-all scuba mouthpiece doesn't fit all! I had an echo before and after. vgrogers@aol.com


Joseph P's August 11 reply to Duane C's August 10, 2003 - Hi, I have a ICD and do some welding at times. My doc said not to use a stick machine but it was okay to use a mig, which I have used without anything happening. Good luck, Joseph. joeandol@shawneelink.net


Jim, August 11, 2003 - Hi, Our 25 year old son Jimmy stopped breathing on his own 2 days ago. He is currently on a ventilator. The tox screens were negative for drugs. His blood alcohol level was 0.2. The doctors don't know what caused this and don't want to take him off the ventilator because he becomes agitated when they reduce his sedation. We need help diagnosing his problem. Does anyone have any suggestions? jihart@dellepro.com


Kate's August 11 reply to Valerie R's August 10, 2003 - Hi, I am sorry to hear that you continue to get bad news. My mom and dad both had heart disease leading to CHF, my brother had a massive heart attack at age 38, and I've had CHF for 9 years. I've been around a lot of these issues all my adult life.
     My mom had CHF and at 80 years of age was told her mitral valve needed to be replaced. She opted for the surgery. When they went in they found the triscuspid valve was also leaking and they replaced that as well. Other abnormalities were also noted. It was downhill from there. You can never be certain what they will find when they go in to look at a damaged heart.
     My Vo2 test showed me at below 10 two years ago. This year, I still tested below 10. I was told that even though I physically qualify for a heart transplant, I am functioning at too high a level to be put on the list. It is possible to be in a transplant program without being on "the list." My EF has been all over the map throughout this 9 year stretch. I have seen a low of 12 and a high of 46, now settling in around 20%.
     Did they actually say you needed to get a heart soon, or just be closely monitored by the team? There is a big difference between qualifying and needing a heart right away. I'd be sure to pin this down! You can always, always change your mind even when you are in the program. My team also encouraged me to try anything new that came along that might help my condition. Their goal is to keep you free from transplant as long as they possibly can.
     As you know, I have opted not to have a transplant because of too many other medical complications, but I found the transplant unit a valuable source of info.
     Please don't just hope that your insurance will pay. Call them and ask if they cover the surgery, meds and home healthcare post surgery. I was told I'd need help in my home for 2 to 3 months after a transplant. Best of luck, Kate. tothymecottage@frontiernet.net


William B, August 11, 2003 - Hi, This is my first post so please bear with me. First, thanks Jon, for the site. As a recent recipient of an ICD (August 7, 2003), I'm highly encouraged by everyone's insight, humor, and knowledge. A 55 year old, I survived an MI in April of 1996 that caused significant damage. Six stents were implanted in my right main coronary artery. My EF at that time was 32%.
     Scared witless, I quit smoking and lost 20 lbs over the next 2 years. My meds include Altace, Imdur, Coreg, Plavix, aspirin, and fish oil. I was placed on Coreg in 1998 as part of a trial and it really helped but like so many others, I became complacent and started smoking again. Exercise I still get from walking. A stress test in July of 2002 indicated 3 blocked stents. My EF is still 32%. Cleanout and irradiation of stents hopefully will stop scar tissue buildup.
     In January of 2003, my cardiologist told me I was a good candidate for an ICD because of my heart attack and EF. I told him I would think about it and we scheduled another stress test for July 15, 2003. After reading everything I could find about ICDs and why I should have one, my wife and I agreed that I probably needed one. The stress test indicated no occlusions but an EF now 30%. My cardiologist referred me to an electrophysiologist, who scheduled me for an EP study on August 7, 2003.
     As I stated in the beginning of this post, I got the ICD that day - my birthday, no less - but as the electrophysiologist said, "It may be the best birthday present you'll ever get." Now I'm in recovery. It turns out my heart was susceptible to ventricular fibrillation. So I have been one lucky fellow for the last 7 years. wbusbee@msn.com


Marian V's August 11 reply to Greta's August 9, 2003 - Hi, I have had restless legs off and on for several years. The only thing that works for me is Xanax. When they wake me up in the middle of the night, I reach for the Xanax (it's kept next to the nitro and next to a bottle of water. Then I try to relax, which is hard when your legs keep moving, but in a few minutes I can go back to sleep.
     Restless legs attack when I have been active during the day - maybe a doctor's visit or shopping, or just on my feet a lot. They are less likely to hit when I havn't been out of the house except for my daily stroll. My husband and I have both have heart problems. He is 80 and had a quadruple bypass and I am 72 years old. I hope this helps you. Queenie@coastalwave.net


Greta's August 11 reply to Valerie Y's August 10, 2003 - Hi Valerie, I can identify with you about feeling okay. Some days, it is hard for me to even realize that I have CHF. On those days, initially I tried to do too much and paid for it later so I am still in the process of learning to pace myself. Be thankful that you do feel good. Some of it is probably the meds, and some of it may be improvement in your heart function. I also believe attitude has a lot to do with it. A positive attitude can go a long way towards helping you to feel better physically and mentally. God is holding us in His hands. Blessings, Greta. gjohnson@arkansas.net


Sharon L, August 12, 2003 - Hi from sunny and hot Saskatchewan, just north of North Dakota for anyone who wonders. Do others with CHF suffer from the heat? It's been 35° C here (hmmm, that'd be about 95° F) and I have been taking a nap every afternoon, feeling really woozy even though I tend to stay in the air-conditioned office, car and house with dashes from place to place in between. My ankles are a bit swollen. Most folks on this bulletin board live in places that get a lot hotter for a lot longer time, and I was just wondering. lyons@sasktel.net


Valerie R's August 12 reply to Kate's August 11, 2003 - Hi, I went to consultation and then metabolic testing full of hope, but the transplant director seemed noncommittal. I don't remember what he said but I think he said I was "eligible." Your post has made me feel very much better and I thank you very much. My doctor has been telling me for 9 years that I am too well-compensated to be put on list, and I was hoping for that response.
     What does it mean to be in the program and not on the list? I haven't been told very much, but the director of this unit will send a report to my cardiologist and I am sure he will go over it with me. My insurance does cover the expenses, but with the medicines there is a co-pay that can go quite high. Thank you again for your words of wisdom and hope! vgrogers@aol.com


Jim I, August 12, 2003 - Hi, I'm curious if others here (or their loved ones) get infusions to help control fluid levels? My dad went in for his first (of 2) for the week, and he got terribly sick during it, with chills, dry heaves, weakness, and all kinds of "fun stuff." He was getting Lasix and dopamine at the time. The nurse/LNP think that he might be allergic to the stuff. They gave him Benadryl afterward and sent him home, and he's starting to come out of the rotten feeling. My best to everyone, Jim. jiminmanjr@yahoo.com


Jimmie B, August 12, 2003 - Hi again, I am sorry to say this, but you guys make me feel good. I am so much better off than most of you I feel blessed. I can do my exercise program at the fitness center, walk (although my neuropathy makes every step hurt), go to work 3 days a week and generally enjoy a somewhat sedentary life. At age 70 I am fairly active and I guess I am gloating. My CHF must be class one. Please keep posting. Y'all encourage me. Alaska has some drawlers too. JButler@hrblock.com


Ann, August 12, 2003 - Hi, I posted several months ago initially. I have CHF and was put on Coreg gradually increasing to 25mg twice a day. My blood pressure was extremely low and they decided I was over-medicated. I have gradually been decreased to 12.5mg Coreg twice daily and Aldactone (spironolactone) and 40mg Lasix have been eliminated. I still do not feel good at all. Does it ever get better or will I just have to learn to live with it? eanall@aol.com


Kate, August 12, 2003 - Hi, This is just a quick tip to all of you who make your own stocks (broths). After you've defatted it if you do, pour the stock into ice cube trays. Put the filled trays on a cookie sheet in the freezer until solid. Then dump them into plastic freezer bags. Take out only as much or as little as you need. I do this with chicken, beef and fish stock. I also use it for things like asparagus and tomatoe puree. No more defrosting a pint, quart or gallon container when all you need is a couple of cubes. tothymecottage@frontiernet.net


Valerie R's August 12 reply to Sharon L's August 12, 2003 - Hi from sunny Miami, Florida. The heat will, as my mother used to say, "take a lot out of you" and it will make you sleepy. My husband says only the civilized countries take siestas! He loved Greece for that reason. I do believe that humidity is much, much worse than simply heat, however.
     I'm a sun person. I'm up with the sun, love the beach, and am ready for bed when it gets dark. In our "winter" down here, I hibernate. Seriously, I've had no trouble in 110° heat in Las Vegas nor in 50 (I was freezing) in San Francisco but high humidity with heat makes my breathing more difficult. vgrogers@aol.com


Valerie R's August 12 reply to Kate's August 12, 2003 - Hi, Maybe now that I'm taking a year's leave from teaching, I will make my own broth. I really like your idea! I bought low, low sodium stock mix at Redibase online and it's good. More recently, I bought Herb Ox bullion, which says no MSG and only 5mg sodium, but it tastes really good to me, and I wonder if they are lying about the sodium! Has anyone tried the beef bullion? Maybe I have been low-salt now long enough that 5mg per cup tastes fine? vgrogers@aol.com
 
Jon's note: Potassium chloride


Kate's August 12 reply to Valerie R's August 12, 2003 - Hi again, I am glad I could be of assistance. It has been a very low energy week for me and I realize I am spending too much time on the Internet! I don't, of course, know what happens once on the list except that most places hand out beepers to notify you should a heart become available. However, as a regular ol' patient, it is usually 6 month check-ups with Vo2 testing, ekg, echo and bloodwork, nothing more exciting than that. The transplant cardiologist did make some changes to my meds, but nothing substantial. They also strongely advised me to get the biventricular pacemaker/ICD.
     You've already been down that road so there should be no surprises. I liked going because it gave me a much clearer picture of how I was doing physically and added one more opinion to the mix. One bit of advice for your next appointment is to come right out and ask if you are being placed on the list for available hearts, and don't leave until you get an answer. Until then, do what I do - live to prove them wrong. Kate. tothymecottage@frontiernet.net


Tom S' August 12 reply to Ann's August 12, 2003 - Hi, You said, "Does it ever get better or will I just have to learn to live with it?" That's a loaded question if I ever read one. You said you have CHF but give no indication of your EF or what the cause of your CHF is. Without that information and probably a lot more, not even a doctor could answer your question the way it is stated.
     We all have varying degrees of heart disease which manifests as congestive heart failure and we are all on somewhat similar medical regimens to deal with it. Some are more aggressive than others, all the way up to and including a heart transplant, which is not considered a cure but a treatment. So perhaps given that body of information you can decide for yourself if it ever gets better? For some it does, for others it doesn't. bigheart@muchomail.com


Valerie Y's August 13 reply to Sharon L's August 12, 2003 - Hi Sharon, Greetings from Wild Rose Country (Alberta, Canada). I feel rather odd too when it's hot outside (over +25) and I put it down to the fact that we live in a country that has a wide variance of temperatures over all 4 seasons. I will gladly take the +25 over the -35 with wind chill factors of -45 any time. Due to CHF, I am very SOB in cold weather, especially when there are strong winds. Take good care and try to keep cool. macinroy@shaw.ca


Valerie R's August 13 reply to Jon's August 12, 2003 - Hi Jon, You are correct as always! Both of them have potassium chloride, but I had to get out a magnifying glass to read it. It's good I'm not working this year so I can learn to do the broth thing. Val. vgrogers@aol.com
 
Jon's note: Homemade broth - properly reduced - tastes sooooo much better.


Jim I, August 13, 2003 - Hi, I'm just curious. The physicians gave us some not too good news today. They think there is fluid building up in my dad's liver. Has anyone ever heard of this? We're coming to the end of our rope, according to the doctors. I've contacted a couple of area hospitals to see what they have as far as referral procedures. Jim. jiminmanjr@yahoo.com


Jon's August 13 reply to Jim I's August 13, 2003 - Hi Jim, Fluid buildup in the liver is very common in acute (decompensated) CHF. If he is sick enough to need dopamine and has liver swelling, I am very surprised that he is still taking Lasix instead of Bumex. Is he being treated by a general cardiologist or a CHF specialist? Jon.


Don's August 13 reply to Valerie R's August 12, 2003 - Hi Valerie, When I was in "the program," that meant I was being watched by a transplant cardiologist, a specialist in transplantation. I was not put on the list for 6 months. Once on the list, I kept working for over 4 months. I ended up in the hospital this March and had my transplant May 25th. It's great to be alive.
     I was born with hypertrophic cardiomyopathy and never was well. Now I am walking 5 miles every morning. Regarding medications, I take many but the big 3 (CellCept, Prograf and Cytovene) cost about $2,500 a month. Like you, I have insurance that covers the cost. There are 2 major initiatives in Congress right now to assist transplant patients in getting their medications when they don't have insurance. I don't have all the details, but it is important legislation. pine32@pacbell.net


Jacky, August 14, 2003 - Hi everyone, I have been asked to particpate in a research program at the local teaching hospital about human growth hormone and cardiomyopathy, and I have decided to do it! I know there has been quite a lot of research already. I believe this is to compare people with low human growth hormone and people with normal human growth hormone to confirm that cardiomyopathy patients benefit from human growth hormone. I will find out more details Friday when I go in. Think of me! Jacky. Jackymwb@earthlink.net
 
Jon's note: Good luck! That's one I actually want in and can't get in!


Nancy S, August 14, 2003 - Hi, I went to the doctor last week and had my pacemaker checked. Up till this point I was under the impression that I had an ICD. I was originally sent to see a CHF specialist to see if I qualified for one and then to see if I qualified for the InSyncIII trial, which I thought was an ICD. I didn't get to be in the trial but I did get an implanted device. I guess it doesn't really matter what I have as long as it works and apparently it does.
     He said everything is doing great after the technician checked my device. I'd had a few PVCs, which I knew but she said everyone has them and it didn't seem abnormal. I go back in 6 months for an echo and another checkup.
     I'm still working full-time as a caregiver for developmentally delayed individuals, which is a very physical job. It involves a lot of patient lifting and repositioning. Some days I don't think I'll make it but I'm 51 years old so I try to think that it would be the same for anyone my age. I have to work for the insurance since my husband is self-employed in a small business and the rates are astronomical, not to mention they wouldn't take me on a bet.
     I'm very fortunate that he takes good care of me and does a lot of the household chores, which gives me my days off to get rested. The heat also gets to me and I agree that the humidity is the worst part of it. I have a really bad problem with perspiration. I'm miserable all summer if I don't have some kind of air blowing right on me and in the winter if everyone else is comfortable, I'm burning up. Does anyone else have this problem? If so, what do you do for it? Nancy. ns1@alltel.net


Greta's August 14 reply to Sharon L's August 12, 2003 - Hi Sharon, Yes the heat with the added element of humidity can cause discomfort and makes it harder to breathe. I live in Arkansas and the humidity here is really bad in the summer time. I was diagnosed with CHF in March of this year. In the past, although the heat was stifling and the humidity suffocating, I could deal with it, but not anymore! Thank goodness for air-conditioning. I am ready for fall and cooler temps. I just wanted to share with you. Blessings, Greta. gjohnson@arkansas.net


Greta's August 14 reply to Marian V's August 11, 2003 - Hi Marian, I have RLS also. Like you, I was initially using Xanax for relief. That only lasted for awhile and then the Xanax didn't work anymore. I asked my doctor for some help and was given a prescription for Carb/Levo 25/100 mg. I don't know if that is a generic name or an abbreviation of something else - I just know it works.
     There was also a study done by researchers at Penn State College of Medicine and Johns Hopkins University that points to a possible cause. They found that a "specific receptor for iron transport is lacking in patients with RLS. When that mechanism malfunctions, enough iron gets into the brain cells to keep them alive, but not enough so that they function optimally. That missing iron may cause a misfiring of neural signals to the legs creating the creepy-crawly feelings." You may be getting enough iron, but those receptors aren't packaging and delivering an adequate amount of iron to the specific cells in that portion of the brain. The web site for this article was http://www.eurekalert.org/pub.
     If the Xanax ever quits helping, you might consider asking your doctor about the medicine I mentioned above. RLS sure makes trying to sleep a lot more interesting! Blessings, Greta. gjohnson@arkansas.net


Greta's August 14 reply to Ann's August 12, 2003 - Hi Ann, When you say your 40mg of Lasix has been eliminated, does that mean the dose was reduced or that you were taken off it completely? Lasix goes a long way in helping to reduce fluid buildup for me. When I take in more sodium than I should (yes, sometimes I do things I shouldn't), I can tell and I don't feel real good. If your dose was reduced or eliminated completely, that could be the cause of some of your not feeling good.
     Have you discussed your feeling bad with your doctor? After my CHF was diagnosed, at an appointment 2 months later, I cried all over my cardiologist because I felt so bad when I expected to feel so much better. It turned out all my feeling bad was my gall bladder so I had that puppy removed. I am not saying that is your problem, but your feeling bad needs to be communicated to your doctor. There just might be a solution. Blessings, Greta. gjohnson@arkansas.net


Valerie R's August 14 reply to Jon's August 13, 2003 - Hi Jon, You are right that homemade chicken broth tastes much better than low-sodium bullion. I mostly followed your recipe but used a crockpot. I have what I hope is not a dumb question: Is it better to have Herb Ox boullion with 5mg sodium and potassium chloride or homemade at 60mg sodium? I don't mean taste - I mean with IDCM and CHF. vgrogers@aol.com


Jon's August 14 reply to Valerie R's August 14, 2003 - Hi, I would prefer to avoid the potassium chloride and enjoy the flavor more, so I would go with the homemade broth. Only if I had problems meeting my daily sodium intake restriction, would I go to the commercial product. Jon.


Jim I's August 14 reply to Jon's August 13, 2003 - Hi, Right now my father is seen by a cardiologist. We've decided to head to Indianapolis to see a CHF specialist, who has experience with the dry heaves and other symptoms my father has. Nurses and clinicians at the CHF clinic all think it is not his liver, but rather stomach problems due to taking Lipitor without food. A GI doc is coming in today to see about that.
     X-rays have come back to show some swelling of the heart. That's to be expected. I've been very encouraged by the physician I found via this web site. I e-mailed late yesterday afternoon, and came to work to have an e-mail, a voice-mail, and another call minutes into my day. I was thrilled at the optimism, and we definitely plan to get up there as soon as possible.
     If someone can take me off this CHF roller coaster, I'll gladly give up my seat! ;-) Best, Jim. jiminmanjr@yahoo.com


Prentiss G's August 15 reply to Jacky's August 14, 2003 - Hi Jacky, I was in a similar study here at UNC about 2 years ago when I was first diagnosed. I was very pleased with the study. I was watched very closely and I really think it helped me. I work at UNC (University of North Carolina) so it was very convenient for me to go over to the hospital frequently for the study. The money was not bad either! prentissg@mindspring.com


Nancy S, August 15, 2003 - Hi all, I am requesting that you add my husband Jerry to your prayer list. He's been having chest pains since last week. He went to the ER Friday night and was told it was acid reflux; he wasn't burning or regurgitating at all. He was given Prevacid and sent home. Today it was still hurting so he went to the doctor, who is sending him for a stress test on Monday. Thank you all for your prayers! Nancy. ns1@alltel.net


Ann H, August 15, 2003 - Hi, Why do you say that a heart failure specialist is necessary? I am newly diagnosed and if it weren't for the foot swelling and test results it is hard to believe that I have cardiomyopathy. Believe me, I do. I don't think I have any symptoms at present other than the swelling which is now under control with sodium restrictions. I went for a second opinion at Hopkins and asked the question. The doctor said that local cardiologist should have someone to turn to because my particular type can get tricky. I did not follow up on that comment. I wish I had, but I'm on info overload. annlau@davtv.com


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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