The paperwork never ends The Archives
January 1-15, 2004 Archive Index

Jon 1-1     here we go again
Sheryl C's 1-1 reply to Craig B's 12-30     eating too much sodium
Kathy 1-1     will Celebrex interact with CHF meds?
Cheryl 1-1     really need some advice
Karen Grubaugh 1-1     dehydration and EF questions & more
Cheryl's 1-1 reply to Craig B's 12-30     your story really helped us
Linda Oline 1-1     Cardio Tabs
Jon's 1-1 reply to Linda Oline's 1-1     Cardio Tabs
Sally 1-1     is this normal?
Jon's 1-1 reply to Sally's 1-1     no
J T 1-3     should I get a second opinion?
Jon's1-3 reply to J T's 1-3     second opinions
Jack D's 1-3 reply to Linda Oline's 1-1     cardiotabs
Laurie P's 1-3 reply to Sally's 1-1     treatment schedule experience
Pat W R's 1-3 reply to Jon's 12-30     am tolerating taurine now
Lydia Moore 1-3     thanks for replies
James' 1-3 reply to Linda Oline's 1-1     cardiotabs & more
Vicki James 1-5     seek Medtronics ICD experiences & more
Curt H 1-5     could sure use an opinion or 5
Maggie 1-5     seek study on ARBs versus ACE inhibitors
Robert 1-5     is there any hope?
Jon's 1-5 reply to Kathy's 1-1     NSAIDs and CHF
Sally 1-5     am really lost on this
Jim's 1-6 reply to Vicki James' 1-5     pacemaker ICD experience
Edward 1-6     seek info on supplements & more
James 1-7     what is low sodium?
Jon's 1-7 reply to James' 1-7     low sodium
Anita S' 1-7 reply to Robert's 1-5     hang in there
James' 1-7 reply to Vicki James' 1-5     device implant experience & more
James 1-7     tool for analyzing recipes
Pam's 1-7 reply to Robert's 1-5     a possible resource
Kathy 1-7     seek Coumadin and INR trouble experiences
Jim B 1-7     Ticket To Work program experience
Darlene 1-7     seek blood test page location
Kate 1-7     seek some ideas
Sandra's 1-8 reply to Kate's 1-7     pacemaker woes and solutions
Valerie R's 1-8 reply to Kate's 1-7     and to James
Jack D's 1-8 reply to Kathy's 1-7     steadying Coumadin dose
Bill's 1-9 reply to Kathy's 1-7     Coumadin dose and more
Sharon 1-9     need ideas about sleep/breathing problem
Kathy's 1-9 reply to Jack D's 1-8     thanks for ideas
Kate's 1-9 reply to Sandra's 1-8     am frustrated with my pacemaker
Pat W R's 1-10 reply to Sharon's 1-9     edema that does not show
Margaret D's 1-10 reply to Sharon's 1-9     sleep apnea and edema
Kate's 1-10 reply to Jon's 1-9     doctors and devices
Pam's 1-10 reply to Sharon's 1-9     sleep problems and GERD
George C 1-10     traded Coreg for metoprolol
James 1-10     seek suggestions
James' 1-10 reply to Sharon's 1-9     sounds like sleep apnea
Joe S 1-10     seek experiences with diabetes meds
Sandra's 1-12 reply to Kate's 1-9     pacemaker/ICD experience
Sharon L's 1-12 reply to Sharon's 1-9     sleep and CPAP experience
Kate's 1-12 reply to Jon's 1-11     it's a Guidant model
Pat 1-12     anemia question
Jon's 1-12 reply to Pat's 1-12     anemia and heart failure
Kate 1-12     sleep apnea experience
Vicki J 1-12     seek device implant experiences
Kathleen 1-12     waiting for SSD killing me financially
Deb's 1-12 reply to Pat W's 1-9     how did they spot that?
Jon's 1-12 reply to Deb's 1-12     the physical exam
Sheryl C's 1-12 reply to James' 1-10     dealing with heart failure
Amelia's 1-13 reply to Kathy's 1-7     Coumadin experience
Katherine H's 1-13 reply to Vicki J's 1-12     pacemaker experience
Henry C 1-13     seek stress test info
Pat W R's 1-13 reply to Kathleen's 1-12     disability experience
Jon's 1-13 reply to Pat W R's 1-13     disability info
Pat W R's 1-13 reply to Deb's 1-12     finding edema in liver & more
Pat W R's 1-13 reply to James' 1-10     you are in my prayers
Vonda 1-14     why can't doctors get it right?
Richard 1-14     possible relief for Coumadin users
Pat W R's 1-14 reply to Jon's 1-13     SSD
John G 1-14     seek ideas and advice
Kate 1-14     is Immodium okay to take?

Jon, January 1, 2004 - Hi everyone, Here we go again. While treatment for CHF has gotten better, a lot of doctors don't seem to have heard it! So remember that educating yourself and being your own advocate is more important than ever for your health's sake. Don't forget to sign up for the mailing list for easy access to heart information. Also, don't forget to use the New Page.
     A note - don't discount the "county hospital" until you've checked it out. The one in my county turns out to have the best compliance with heart failure treatment guidelines of any hospital in the area - including the one where my own CHF doc practices. Jon.

Sheryl C's January 1 reply to Craig B's December 30, 2003 - Hi, I overdid the salt during the holidays too. It is so hard to resist just a bite here, a bite there, when all your old childhood memories are mixed in with certain holiday foods. Warning: Chex Mix kills! Do you think the fact that my sister still serves ham every year means she is trying to "off" me? I didn't get crazy enough that I had a trip to Club Med but I did have to get some extra fluid off.
     Wouldn't it be great if God would yell "Ollie, ollie in come free (salt day!)" and we could just pig out? I hope everyone else besides Craig and me behaved better. :-) Sheryl C.

Kathy, January 1, 2004 - Hi, I have a question about taking Celebrex for arthritis pain. Will it interfere with my CHF meds?

Cheryl, January 1, 2004 - Hello all, A newbie here! I need your help. My 60 year old husband was just diagnosed with CHF. He went into the hospital 2 weeks ago with pneumonia, pleurisy, and a partially collapsed right lung. He was there for a week. Three days later I'm rushing him back into the ER. This time they find a-fib and edema. They drained 1-1/2 quarts of fluid from his right lung.
     Now he's home and going for a stress/rest test next week. He's not on Coumadin till after the stress test. He is on a diuretic. We're concerned that both his ankles are swollen quite a bit. He's keeping his legs up. Is there anything else we can do for them? Should he restrict water or drink more? Can he drink diet Coke? Can I massage them or is that not a good idea?
     Also, the cold air (New Hampshire) restricts his breathing - is that normal? Thank you very, very much! Happy new year to all! Cheryl.

Karen Grubaugh, January 1, 2004 - Hi, I am a new CHF patient - one month today. I know none of you are doctors but wonder if your experience can give me some insight.
     My EF has dropped from 25 to 30% on December 1st to 10 to 20% on December 20. Between those dates I became dehydrated. I thought it was side effects to new meds and just endured for 3 days before I saw the nurse in the Heart Failure Clinic at Brooke Army Medical Center (BAMC) in San Antonio, Texas. The doctor adjusted my meds and I was much better in a couple days. Could my lower EF rate have been caused by the dehydration as the second test was done while I was feeling really bad due to it?
     Can your EF go back up after rehydrating? I would appreciate any words of wisdom about EF and/or living with chf.
     Thank you Jon, for this web site and opportunity to connect with other CHF patients. CHF is very new to me and my family. I am working my way through the whole web site, and it is a godsend. May the Lord bless each of you with improved health in this new year! Karen, in Boerne (Burr-knee), Texas.

Cheryl's January 1 reply to Craig B's December 30, 2003 - Hi, Thank you for sharing your story. We are new to CHF and my husband experienced your exact story (including getting "cheeky") a couple of weeks ago. He thinks he's weird for having those same strange concerns. His doctor told him he had good reason to be concerned. I printed off your story to show him that he's not alone.
     You also helped me realize that these feelings he had are real and to pay attention to them. I tend to be skeptical of people being sick because throughout childhood I had a parent who used sickness and drugs as an escape. This site is a wonderful educational tool for me. My poor husband may actually get some sympathy from me! <g> Thanks again, Cheryl.

Linda Oline, January 1, 2004 - Hi, My cardiologist recommends that her patients take a multivitamin and CardioTabs, which are made in Kansas City at St. Luke's Hospital by a cardiologist. Has anyone else been advised to take this? It will eliminate some of my many pills and that sounds great. She also told me that my heart is enlarging and that they are doing everything now that is available. It still is not good to hear this. Linda O, age 64, EF 25%.

Jon's January 1 reply to Linda Oline's January 1, 2004 - Hi Linda, If these are the same supplement shown at, I wouldn't waste my money. I would find something more suited to CHF or use a regular multivitamin/multimineral plus some supplements purchased separately that are more appropriate for CHF. I don't know if they are the same, but this one is missing taurine and L-carnitine, and has almost no CoQ10 to speak of in it. Jon.

Sally, January 1, 2004 - Hi, I just found out I have CHF and they haven't started me on any meds except for aspirin and my next appointment is in March. Is this normal to wait that long?

Jon's January 1 reply to Sally's January 1, 2004 - Hi Sally, Based only on the little you supplied, no, it is extremely abnormal. I would get a CHF specialist immediately. Jon.

J T, January 3, 2004 - Hi Jon, I have been recently diagnosed with non-sustained v-tach. I also have CHF and PH. My cardiologist has decided to leave my meds the same since I am already on a beta-blocker. I am thinking of getting a second opinion. I have read that my chances for sudden death rise significantly with heart failure and non-sustained v-tach. Since I am in no hurry to check out I would like to hear any thoughts you may have. Happy new year and God bless you. Thanks very much.

Jon's January 3 reply to J T's January 3, 2004 - Hi, Personally if I were in your shoes, I would get a second opinion. I would do this with a cardiologist who treats multiple PH patients to make sure my PH was being handled correctly. I would also get an opinion from an electrophysiologist, and also just because you sound unsure if your current treatment is proper - that's the best of all reasons to get another opinion. Jon.

Jack D's January 3 reply to Linda Oline's January 1, 2004 - Hello Linda, Cardiotabs are a complete waste of money. Sure, they have some of the nutrients that you need but they don't have enough of any of them. They are not made at St. Luke's hospital. The group of doctors who patented the formula have an office on Wornall road just north of Saint Luke's. Maybe if you ate an entire bottle every day you might do some good but otherwise they should stay on the shelf. Jack.

Laurie P's January 3 reply to Sally's January 1, 2004 - Hi Sally, I was recently diagnosed with dilated cardiomyopathy in mid-November. I then saw a cardiologist on 12/8 and was in for a cardiac catheterization the next day on 12/9. At that time I was told to take aspirin and was put on Coreg 3.125mg twice a day. On 12/29 they added another medication - Lisinopril 2.5mg once a day.
     I have an appointment on 01/22/04 with a heart failure specialist. They are setting me up with a rehab department to help me understand what I should and shouldn't be eating and to help me quit smoking. I hope hearing this helps you. I wouldn't waste 2 months waiting. Maybe you could try a different doc.
     One thing I have learned from this web site is that we are not alone and if you don't like something a doc tells you to do, you are in control of yourself and your health, and you can make the choice to get help elsewhere. I was lucky that they have kept right on top of things with me. If I was in your shoes, I would be questioning the wait. Good luck to you and if you would like to chat, e-mail me! Laurie.

Pat W R's January 3 reply to Jon's December 30, 2003 - Happy new year to all. Jon, I just wanted to let you know that I have been taking the taurine at half dose and it seems to be working just fine. The dizzy spells are gone. I will continue this for a week, then I will add the carnitine. Thanks for the advice. I appreciate you. Best wishes, Pat W. R.

Lydia Moore, January 3, 2004 - Hi, I just wanted to thank everyone for their input on my sinus problems. It was very helpful. I hope everyone has had a blessed Christmas and new year' day. Better health to all of you. God bless, Lydia.

James' January 3 reply to Linda Oline's January 1, 2004 - Hi Linda, Looking at the ingredients from their web site, there's not much in there to make them worthwhile. A good, solid multi-vitamin will have much of the same. I would spend a little time at GNC or Vitamin World comparing the contents of CardioTabs with their multi-vitamin lines. Both have online stores with information as well. After that, I'd supplement accordingly.
     The CoQ10 amounts are much lower than current studies suggest are effective. DHA/EPA is commonly found in fish oil pills and in other supplements like OmegaZen 3. Give Jon's Nutrient Stew pages a look for more helpful information.
Jon's note: For those living in Europe, try finding a supplement called MyoVive - it's great for heart failure.

Vicki James, January 5, 2004 - Hi,I'm new to this board but would like anyone experienced with Medtronic ICDs input. I'm going Tuesday to see if they are putting one in. I have IDCM with class 3 congestive heart failure type 3. I'm having a lot of PVCs, V-tach and chest pain. The CHF specialist said my arteries are clear.
     I've had 6 family members on my father's side die with CHF, including my father. With most of them it seems to have come from viral infections. My EF is 25% now; it went up to 45% last year, then I started feeling bad and had a right and left cath and it had gone back down to 25%. Is there any test for my 28 year old son to see if he is likely to carry the gene that causes this? I worry about passing it on. Sorry this was so long, I just wanted to see if you can lead a fairly normal life with the Medtronic ICD. God bless, Vicki James.

Curt H, January 5, 2004 - Hi, I hope everyone is feeling great. I know no one here is a doctor but I just wanted an opinion if someone has the time. I had an MI in March of 2003 with a stent placed. However, I still have a blockage they were unable to open. My doctor says that other blood vessels are providing good flow. As a result I have CHF with an EF of 36%. I have been to two doctors: One says I need bypass surgery, while the other says no need. Boy, am I confused! Please take a look at my meds and tell me what you guys think. Will I be taking these for the rest of my life?
     Zetia, Lasix, Aldactone, Imdur, Plavix, Crestor, Coreg (25mg twice a day) Digitek, aspirin and Accupril as well as Coenzyme, taurine and L-carnitine as Jon has suggested. If you have a minute, I would really appreciate your opinion. God bless each of you, Curt.

Maggie, January 5, 2004 - Hi, I've was diagnosed with DCM/CHF a year ago and am currently working with a CHF specialist. The protocol of meds, salt and fluid restriction, weight management and exercise are keeping me well compensated. However, even though I have kept to the program, my EF (19%) hasn't budged. My doc and I have had discussions about enalapril versus Diovan. I took the former and had lots of side effects so he switched me to Diovan and the side effects cleared up. I told him at the last appointment that I was willing to give enalapril another try if he thought it was a drug that would get better results. His reply sited a recent "study" that indicated little, if any, difference in the mortality rates between the two drugs. Does anyone know about that study or if either drug is recommended over the other. Any information would be appreciated. Thanks.
Jon's note: Why not stay on Diovan and try adding low-dose enalapril or other ACE inhibitor for added angiotensin II blockade "upstream"? If he is quoting VALIANT, it only enrolled post-heart attack patients. Also, see and I will have an article on the CHARM trials up soon as well.

Robert, January 5, 2004 - Hi, I am hurting badly and am very scared. I was diagnosed with CHF in late May of 2003 and have had high BP (blood pressure) for many years. My cardiomyopathy is from high BP. I have seen many cardiologists and CHF specialists and they are at a loss with me. The problem being that I must take an MAOI inhibitor for nightmares, night terrors and depression since nothing else helps me. It seems diuretics are contraindicated to this med as are many others, so I cannot get on anything to help me with my CHF - just Lasix, which makes me vomit but I can breathe on it. I take no ACE inhibitor or anything for high BP since I vomit way too much then. The casualities of war are not always in the original numbers. I was a very young Marine in Vietam and now the price I pay is high. I seem to have been swept under the rug to die. I am getting extremely weak and my wife is about nuts! Is there any hope?

Jon's January 5 reply to Kathy's January 1, 2004 - Hi Kathy, All NSAIDs cause humans to retain fluid and this is obviously bad for CHFers - see Heartbytes' articles on NSAIDs and CHF. However, I am currently taking Celebrex myself for arthritis short-term. You have to balance need versus risk after looking at all the options. It helps to really cut your sodium intake even further if you also take NSAIDs. I don't know offhand of any serious interactions with standard CHF meds but be sure to ask your pharmacist! Jon.

Sally, January 5, 2004 - Hi, Thank you for your replies. I went to my doctor and told her I was having chest pains. She decided to have a stress test done. I have been on high blood pressure meds for 2 years. When I went to have the stress test done, they did an echo first and told me my heart wasn't pumping right so they scheduled my for a heart cath. That's when they told me I have a 35% blockage in one artery and that I have cardiomyopathy. They said my EF is 47%. I have irregular heart beats and told them about that, but like I said before, they have done nothing except give me aspirin and they said my high blood pressure pills might help my problem.
     I know nothing about this at all except what I have read on the Internet and it sounds pretty scary. I dont know what to do. My family seems to think that since I do the same things I have been doing that it's no big deal, but I know how tired I get and how hard it is to do the things I have to do and how I get out of breath just from walking up the stairs. Right now I guess I really have no support system so I need all the advice I can get. Thank you again.
Jon's note: Get a new cardiologist immediately, one who knows how to follow the official CHF treatment guidelines!

Jim's January 6 reply to Vicki James' January 5, 2004 - Hi Vicki, I am new to the site too but not to CHF. I had a Medtronic pacemaker/ICD put in over a year ago. It is their fancy model with synchronized biventricular pacing. It replaced a more basic 2-lead Medtronic pacer that I had for a few years. I found that getting a pacemaker is no more difficult than a simple heart cath, except the wound is slightly bigger and you end up with a lump. I was back to normal almost the next day. The only limitation was not raising my left arm over my head for a month. Some people find it a little more diffecult but I have never heard any horror stories from the large ICD support group that I belong to.
     Mine has never gone off so I cannot comment on that experience. Many new patients have some anxiety about their ICDs going off. I never worried much about it since I figure if it goes off it will be to save my life so I won't be complaining. Good luck and don't forget to check the Medtronic web site for a better understanding of the therapy they are considering for you. Jim.

Edward, January 6, 2004 - Hello, I am new to this site. I was diagnosed with CAD and cardiomyopathy on 10/30/2003. My EF is 35%. I am on Coreg. Other meds will given to me on the 19th of this month but I'm not sure what they will be.
     My question is because I understand that Coreg raises blood sugar levels and leaves some people taking it impotent, and that when trying to gradually get off it, bad things can happen. I have been taking Coreg only since October. Would this be the time to explore the possibilities of other medication? Do you have any information on all natural supplements as an alternative to medication along with chletion therapy? Any help or suggestions you can give will be greatly appreciated. Thanks, Ed.

James, January 7, 2004 - Hi, As I read more and more about good health, diet, and all the great info out there, there is one theme that consistently recurs in regards to the heart: "Low sodium." My doctor has preached this to me for the last couple of years and it is of course even more important these days, but one thing I've never been told is just what a low sodium really is.
     Obviously, it means low in salt - I get that. <g> What is low? Of course, we could consider a "serving" on most products but I think that's ridiculous; I mean, come on, who really believes that a can of condensed soup is 2-1/2 servings? So I took a look at a few things I commonly eat and considered them a bit more realistically:

The USRDA of daily sodium intake is 2400mg for healthy people. When I asked my doctor what constituted a low sodium diet, he came back with 3g (3000mg). I've seen recommendations as low as 2000mg. That makes me curious. What have others' doctors said on the matter?

Jon's January 7 reply to James', January 7, 2004 - Hi, A low sodium diet is 2000mg or less daily: Very low sodium is 1000mg or less daily; for those with serious issues, daily sodium intake can be cut to 500mg or less daily but that is considerably more difficult.
     I have one word for you: Homemade! That goes for soup and bread in particular. See the recipes at Also, read the intro at - I address the issue of "servings" there, among many other things. Heavy use of peppers, vegetables, herbs and spices, in ways pleasing to the individual, make things like ramen noodles unnecessary. Low sodium cheese is available and real Mozzarella is naturally low sodium.
     If you commonly eat the things you list, you must be eating very small amounts or be eating a lot of sodium every day. ;-) Jon.

Anita S' January 7 reply to Robert's January 5, 2004 - Hello Robert, You touched my heart with your post about your health problems. My husband is also a disabled marine who was in Vietnam at age 19. You are right when you say that the casualties of war are not always included in the original numbers. My brother died of mesothelioma from working with asbestos while in the Navy 30 years ago. He was only 52. Freedom is never free.
     Is there any way that you can get a second opinion at a health clinic in your town? I really do not know of any advice to give you but I just wanted you to know that you are not alone. Please don't give up. Take care. Phil and I will be thinking of you.

James' January 7 reply to Vicki James' January 5, 2004 - Hi Vicki, I had one of Medtronic's 3 lead pacers installed a few months back. I have CHF, with an EF down to around 20 to 25%, a QRS interval of about 148 ms, and my heart had enlarged to about 6.5cm. The doc said my arteries looked clear as well.
     I posted a lengthy detail to the forum shortly after the procedure. You might want to hit The Archives to give it a read. The doc decided to go with the pacer when my CHF continued to worsen in spite of meds.
     When I saw him again about 6 weeks after the implant, my EF had popped up to 30 to 35%. We're hoping for the best. This was the first good news we'd received in 2 years time. You'll want to give Medtronic site a good review for information and if there are any questions I can answer, feel free to drop me a line. It's a scary thing when you go in blind (I know) but in the end it's not as bad as we tend to make it in our minds. :-)

James, January 7, 2004 - Hi, For anyone interested, the USDA has a great resource on their web site when trying to determine the contents of various foodstuffs. The main site is at and by using the "Search" function, you can actually analyze an entire recipe for contents. I ran the Moosewood Cookbook's Gypsy Soup through it and found that, as long as you nix the 1 tsp of salt in the recipe, it was about 1500mg of sodium across 4 servings (365mg on a per serving basis). Use water in place of chicken stock and that drops to 460mg across the recipe or 115mg per serving. This is an awesome soup and very filling so a serving is actually a serving. I'll be analyzing all my recipes using this tool, not only for sodium content but for other minerals and such as well.

Pam's January 7 reply to Robert's January 5, 2004 - Hi Robert, I want to encourage you to talk to Dr. Mann at Cornell University, who is doing a study on paroxysmal hypertension. He is studying ways to help people who have uncontrolled hypertension due to the kinds of life stresses you have experienced. Please just talk to him to see if you meet the criteria for his study. If you don't, he still may be able to make some suggestions that might help bring your blood pressure down. See: I wish you the best! Hugs, Pam.

Kathy, January 7, 2004 - Hi, I am concerned about Coumadin and if it can ever really be regulated. I am the gal who had 2 valves replaced with the mechanical ones to avoid open heart surgery again in the future, but have had 2 hospital visits because of internal bleeding and bruising since then, because my blood got so thin. Does anyone out there have this problem with the medicine Coumadin (warfarin)?

Jim B, January 7, 2004 - Hi, I did learn today. To qualify for Ticket To Work, your doctor has to release you to work. My Dr. says I can't. Contrary to the program, you will get a medical review. The lady I talked to said as long as your doctor says you can't work you'll keep your benefits.
Jon's note: Can you ask them to send you a letter to confirm that?

Darlene, January 7, 2004 - Hi, I would like to know if anyone knows where the site for blood test ranges would be. I cannot remember if I found it here before or somewhere else. Thank you!
Jon's note: See

Kate, January 7, 2004 - Hi, I had a CRT device (ICD/biventricular pacer) implanted in September. After many problems, I just started feeling better about 2 to 3 weeks back. Then this weekend, I started with lots of skips in the old pulse. It has grown worse and I am currently wearing a holter monitor for 48 hours.
     I don't like surprises and am just wondering if there is anything other than atrial fibrillation that might be causing this problem? I have the skipped beats, fatigue, SOB, dizziness and lightheadedness, and it is getting worse by the day. Kate.

Sandra's January 8 reply to Kate's January 7, 2004 - Hi Kate, I had an ICD/biventricular pacer put in last January. However, the 3rd lead kept coming out and after 3 more tries, they finally got it to stay in October. I felt worse than I ever had, experiencing the same problems that you are.
     One day while in cardiac rehab they noticed my heart rate was irregular. My doctor's office had set the pacemaker to only pace while my heart rate was under 120 beats per minute. My heart rate goes to 140 while exercising, so they increased the parameter to 145.
     Another problem I had was that Lasix was dehydrating me, which made my heart rate go up. After reducing Lasix and with the increased parameter, I am not experiencing the symptoms anymore. When I went to the doctor's office to have my device checked previously, I was alway lying on a table so they didn't know what it did when I was moving around. I have a polar monitor that I put on when cleaning the house, etc,..., so I know when my heart rate goes up too much, so I can sit down and rest. I hope this helps.

Valerie R's January 8 reply to Kate's January 7, 2004 - Hi Kate, I had a Medtronic Insynch ICD/biventricular pacer implanted November of 2002. The CRT part did not work for me. I went to the hospital twice and feel much, much better when the CRT part is turned off. I was decompensated most of the 2002-2003 school year and it was really awful. I don't think I should have had it, frankly. My QRS was only 115 and I felt fine, even though my EF is 10%.
     James, may I have the recipe for the soup?

Jack D's January 8 reply to Kathy's January 7, 2004 - Hi, You don't really regulate the Coumadin. You need to learn how to regulate your diet. The doctors are trying to regulate how much Coumadin you need at any given time because they can't regulate your diet, which can change the action of the Coumadin.
     I don't remember the foods that alter the effects of Coumadin because I have been off it for years. Basically, it's dark green vegetables, though. You don't have to quit eating them. You just have to try to eat the same amount each day, then your Coumadin can be adjusted to compensate - or you can quit them altogether.

Bill's January 9 reply to Kathy's January 7, 2004 - Hi Kathy, I presume that you have regular prothrombin time (PT, now called INR) tests. I have taken Coumadin regularly for a couple of years because I tend to atrial fibrillation, and have actually done fairly well with it. My cardiologist has me come in monthly for PT tests.
     One thing I early discovered is that Tylenol will affect PT times rather severely. In my case, it thinned my blood. I keep the Tylenol doses constant from day to day. We've established a Coumadin dosage that keeps my PT times in the 2 to 3 range.
     A personal word: I have had CHF for several years, with a fairly consistent EF of 35%. I had a severe myocardial infarction 30 years ago, followed by open heart surgery (6 bypasses) 23 years ago this month. Outside of a-fib, I don't have many problems. The doc put me on Sotalol 3 months ago and that has controlled my a-fib thus far. I hope this treatment keeps working.

Sharon, January 9, 2004 - Hi, I am new to this site. My husband has CHF and dilated cardiomyopathy. He has been doctoring for 5 years for it. Lately he cannot sleep well. He will doze off, then wake up gasping for breath. We have been to an emergency room 3 times in the last 3 months and they raise his Lasix dose and send him home. He is still not able to sleep well. The latest suggestion has been to up the Lasix to 40mg in morning and 40mg around 4:00 PM. It doesn't seem to be helping.
     In fact, we don't think he really has extra fluid. There appears to be no swelling in his legs or ankles. Do you have any suggestions to what could be happening? His EF is 30%. Due to other medical problems (Addison's syndrome, renal cell cancer, and lung problems) we wonder if it is something rather than CHF. I would be very appeciative of any information and opinions.
Jon's note: Just for starters, has he been tested for sleep apnea? I hope others make suggestions too!

Kathy's January 9 reply to Jack D's January 8, 2004 - Hi Jack, That's just it, I gave up most vitamin K stuff, nothing green in my diet. I do think they should have checked me more than once a month though, especially with my history of bleeding. It's too soon to just let me go that long with 2 bleeds that put me in the hospital, but I appreciate your thoughts. Kathy.

Kate's January 9 reply to Sandra's January 8, 2004 - Hi, I think my experiences since receiving my ICD/pacer have been the most frustrating of my life. I did suggest they do a chest x-ray to check lead placement but they wouldn't order one. About a month ago I started to gradually resume the exercise program I was able to do without difficulty prior to the implant. Because that program includes 200 ab crunches (I was doing 400 before implant) I was nervous that I had popped a lead - but no one listened.
     I, hopefully, will know on Monday what the monitor reads but I am skipping beats constantly and have no way of knowing if I am having PVCs, atrial fib or whatever. I thought these little gadgets would be a heck of a lot more useful than they have turned out to be for me. Either it doesn't record what is going on, or the limitations to record don't fit the parameter of the event, or something else. So far I have found no real good use for the thing. It isn't even heavy enough to make a good paperweight!
     Certainly a fairly active woman has become a very inactive semi-invalid and I am not happy about that at all. If they figure it out (and I can understand what they are telling me) I'll clue you in when I know. Thanks, Kate.
Jon's note: I don't know enough to do more than guess, but much of a pacer's usefulness depends on its programming. Have you thought about changing EP doctors to see if someone more knowledgable about the software can get it right? The web usually enables device recipients to get tons of info on their specific device.

Pat W R's January 10 reply to Sharon's January 9, 2004 - Hi Sharon, I read your post about your husband's breathing problems during sleep. I also went through this and had no clue why. I had no visible swelling and had been taking my meds as directed. Since finding this web site, I have found that edema is not always visible. I experienced water retention in my liver area. This made it extremely hard to breathe. It doesn't allow your diaphram to expand your lungs fully, so you gasp for air because you can't inhale fully. Lying down was the worst.
     Once I modified my diet - lowered the sodium - it went away. I was told this by my cardiologist after I learned about it from the web site. I did have to have IV Lasix once to relieve me of the fluid because the pills wouldn't absorb. I hope this bit of info is helpful to you and your husband. I wish you both the best, Pat.

Margaret D's January 10 reply to Sharon's January 9, 2004 - Hi Sharon, I agree with Jon about checking for sleep apnea as soon as possible. Waking up at night gasping for air can also be a sign of left heart failure. You can be retaining fluid in your lungs and around your heart and in the abdomen, without having edema in the lower extremities.
     The best way to know is to always weigh yourself every single day at the same time in the same clothes before you eat. If your weight goes up 2 or 3 pounds overnight, you should call the doctor; or if you gain 5 pounds in one week. Also, 80mg total Lasix really isn't a large amount. Some have told me that it is best to take it all at once instead of in divided doses, but not everyone agrees with that method. Just my thoughts!

Kate's January 10 reply to Jon's January 9, 2004 - Hi Jon, Yes, I have thought about changing EP docs. It all gets so complicated, though. That would put my cardiologist and EP docs at different hospitals and I think that could get really messy down the road.
     The gadget I am currently carting around is the most sophisticated on the market. I remember my EP doc telling me that it had the capability to do many, many things, none of which he was going to program because I was so badly abused by my first defective device. I think they were running so scared because of the potential for litigation that they just didn't want to do anything besides stick with the basics. I'm not sure if I was in their shoes I would have done anything differently.
     Perhaps now that things are starting to go astray, they will consult and consider turning on some of the other goodies. Despite all my efforts to educate myself about these things, the complexity level gets way beyond me and I often feel like a deaf person must feel without an interpreter. I was always lousy in science and now my very life depends on it. It's frustrating to say the least. Kate.
Jon's note: If it's a Medtronic device, call them and ask to have a rep come discuss your case with your EP doc. Medtronic reps I have dealt with are very good.

Pam's January 10 reply to Sharon's January 9, 2004 - Hi Sharon, I'm sorry to hear that your husband is having a rough time sleeping. I generally do, too. I recently went to see my new cardiologist for CHF. She suggested the waking-up-choking thing might be from GERD (gastroesophogeal reflux disease). It is not uncommon for hypertension or heart failure patients to develop GERD due to taking some of the common medications to treat their heart which can cause GERD.
     You might want to try magnesium supplements, which have an antacid effect and don't interfere with absorption of Vitamin B12 in the digestive tract, like some of the powerful new antacids do. Inadequate levels of B12 can lead to abnormally high levels of homocysteine, which indicate raised risk for heart attack. I feel like warning people about this now that Prilosec can be purchased over the counter! Continued use of this product and other products that block production of gastric acid can lead to vitamin B12 deficiencies and hyperhomocysteinemia, which in turn leads to increased risk of heart attack and stroke.
     Anyway, I hope your husband gets better sleep soon! And you, too. Hugs, Pam.

George C, January 10, 2004 - Hello Jon, I hope all is well with you. I just thought I would let you know that I finally gave up on Coreg. The side effects were just too many, including fatigue, irritability, numbness in hands, occasional headaches, reduced exercise capacity, and intestinal irritation. I decided that my quality of life was just too low on Coreg. I'm back on metoprolol and tolerating it well.
Jon's note: I think it's great you are tolerating metoprolol so you can get some of the benefits!

James, January 10, 2004 - Hey all, It has been awhile since I've been to Jon's site. I had to get a new computer and things just have been going nuts. My EF has dropped over the past 6 months. It has gone from 25 to 30% down to 10 to 15%, and I have spent 15 days in the past month in the hospital. I was so dehydrated that I went into kidney failure and that brought me blood pressure way down. They took me off all my meds for about a week, then I went back into the hosptial with pneumonia.
     I am really down at this point. My wife and I are going nuts. I'm only 30 and have lived with this for 5 years and it seems like it is not getting any better - just getting worse. I have also lost 75 lbs in the last year and the doctors still say that is not enough. He wants me to lose another 100 lbs and it is very hard to do without being able to exercise, so any suggestions would help.
     I also just recently was diagnosed with diabetes. They tell me that I probally got diabetes due to all the steroids I was given as a child for asthma. Any suggestions would help. Thanks y'all.

James' January 10 reply to Sharon's January 9, 2004 - Hi Sharon, What you describe sounds very much like obstructive sleep apnea or OSA. Your husband should undergo a sleep study. Sleep apnea affects many CHFers. In fact, it is one of the many conditions that can cause CHF. It often afflicts folks that are overweight. Another type of apnea is central apnea and this also involves difficulty breathing, as does "mixed apnea."
     In short, folks with sleep apnea stop breathing - in OSA this happens when the airway becomes blocked by tissue (tongue or otherwise), and after several seconds the subject startles awake to restart breathing. This can happen a few times a night or far more up to over 100 times. When a subject stops breathing, it is called apnea while periods of reduced oxygen are called hypopneas. In the case of the latter, the subject doesn't actually stop breathing but isn't getting much air.
     When being tested for sleeping disorders, it is important that you find a board certified sleep clinic and doctor. I cannot emphasize this enough. Sleep disorders should not be treated by a doctor who is not a board certified sleep specialist. There are many stories of folks who went the alternate route and paid for it later.
     The first step in the process is to be tested via a sleep study. During a sleep study, the clinic will attach sensors to your head, chest and legs as well as a sensor on the finger. These sensors measure brain waves, chest expansion and contraction, movement, and oxygen. They also put a small canula under the nose to sense the flow of air as the subject breathes. Based on these readings, it will be determined whether or not you have a sleep disorder.
     The most common treatment for sleep apnea is the use of a CPAP (Continuous Positive Air Pressure). A CPAP is simply a device that keeps air pressure on the back of the throat to prevent it from closing up. It's a little boxy thing with a water well to humidify the air, that hooks to a hose and then a mask. The mask fits over the nose and is held in place with elastic bands that go around the head. There are also masks that go over the whole mouth or that just tuck under the nose. Although this might sound bad, it's no biggie and most people quickly adjust. There are other breathing rigs such as a BiPAP or an AutoPAP, but the general gist is the same.
     Before sending the patient home with the CPAP, the clinic will perform a titration. This is essentially the same as a sleep test, but this time the patient wears the CPAP. The sleep techs will observe the patient's breathing and adjust the pressure on the CPAP until there is a prolonged period without any events such as apneas or hypopneas. At the beginning, this process is a little uncomfortable because it may be tough to breathe and the mask is foreign. In no time at all, it gets very easy and a good night's rest is in the future.
     Sleep apnea is frequently overlooked as a CHF-related condition. If your husband has not yet been tested for it, you may want to do so soon. Take care.

Joe, January 10, 2004 - Hi, I finally get my aorta valve working and now they tell me I have diabetes type II, bad. I guess I'll never get back to those carbs or pastrami sandwiches. Has anyone ever taken Dextrol LA? It seems to help. Joe S.

Sandra's January 12 reply to Kate's January 9, 2004 - Hi Kate, I know how frustrated you are. I used to run 4 miles a day and now I can only walk at 2.8 mph on the treadmill. It is possible that you have a device lead problem. Mine came out twice before they got it to stay in. Everyone kept saying it was not the exercise or anything else I was doing, but that's hard to believe sometimes.
     I can tell you that your doctor needs to see what the numbers are when you are exercising. It is possible that it's not pacing if your heart goes over a certain rate, which would have your heart acting like the ICD wasn't there. My doctor said my heart rate went higher than most patients because it was used to exercise, which yours apparently is too. He said most stay under 120 bpm. You need to take Jon's advice if your doctor won't listen to you and find someone experienced that will.

Sharon L's January 12 reply to Sharon's January 9, 2004 - Hi, In addition to what James had to say, I can report on how the CPAP has helped me. I was skeptical regarding how I would sleep with a machine hooked up to me, but it has been great. I now sleep through the night almost always, at least from 11:00 PM to 6:00 AM or so, which is a far cry from what I have been doing for years.
     I have the hypopnea variant James described, and the CPAP has helped with that. I have perimenopausal hormone fluctuations that sometimes interfere with my sleep, but they are rare. I find I sleep best when I regularly attend my cardiac rehab classes, and walk and ride the exercise bicycle. I also spend a few minutes outside every day in the back yard with the dogs or cleaning cars off, temperature permitting - I live in western Canada and we were recently stuck at 20 below zero F.
     You also have to have good sleep hygeine, so my sleep specialist says: A cool dark room, a fairly strict sleep routine, a quiet time before bed, sometimes a warm bath. I ingest no caffeine since I have PVCs, so I don't have to fight that. A sleep specialist and his staff can help with all these things. I also take Atacand before I go to bed so I may have the benefit of having its drowsiness side effect help me to sleep, but I'm usually pretty tired by 10:00 PM. Cheers to all.

Kate's January 12 reply to Jon's January 11, 2004 - Hi Jon, Unfortunately, it is a Guidant. After my first defective device died I was unable to switch to a different manufacturer because of insurance problems. Guidant had no choice but to offer a free replacement and if I'd gone Medtronic my insurance would have been stuck paying for 2 devices in 4 months. Also, I have a new version of leads that are exclusive to Guidant. Kate.

Pat, January 12, 2004 - Hi Jon, I had a follow up with a rheumatologist on Friday. I have seriously bad degenerative osteoarthritis in my left knee. I asked him to lower my Celebrex to 100mg and for a scrip to continue knee rehab. He dropped a bombshell on me. He told me that my blood work showed I am anemic. He took more blood to see if there have been any changes since the original 5 weeks ago.
     I am curious - can heart meds cause this? I take Coreg, Accupril, and Lanoxin. I am totally off Lasix. I also wonder why my internist has not noticed this. I have a blood test about every 6 weeks. Have you ever heard of this? I hope your knees are better. Thanks, Pat.

Jon's January 12 reply to Pat's January 12, 2004 - Hi Pat, I don't know of anemia coming from those meds. However, it is far from uncommon in CHFers. See It is very important to get it corrected. Jon.

Kate, January 12, 2004 - Hi, My husband would not believe me when I told him I knew beyond question that he had sleep apnea, so I tape recorded him. He was stunned by what he heard, or rather the large gaps of what he didn't hear - the sound of breathing. He did attend the sleep clinic and found he was waking up to 40 to 60 times an hour. He looked absolutely dreadful and felt worse.
     He tried the CPAP machine, but it did nothing for him. He had surgery to remove his uvula and to remove excess fatty tissue from his palate. A couple of days on chipped ice and he was fine. The doctor had me look down my husband's throat when he had him leaning back in a dental-type chair and I was stunned to see virtually no airway. Gravity can eventually pull down the palate just like it does other parts of our anatomy.
     He still needs additional surgery to correct nasal breathing obstruction as well, but money is just too tight for him to miss work. He could benefit from it for sure, but he is still much better than before.
     There are lots of reasons for sleep apnea so make sure you get a good ear, nose and throat specialist to do a full exam. Kate.

Vicki J, January 12, 2004 - Hi, I'm getting an ICD on January 19th. Has anyone ever had them put it under the muscle in order to be less noticeable? Also, how long does the surgery take? Thanks, Vicki J.

Kathleen, January 12, 2004 - Hi, I have an SSD question. My EF was 35% in February of 2003 and did not change when retested in November, 2003. I am currently on Diovan HCT, Coreg and Coumadin. I went to my SSA office on 01/12/04 for assistance and found out the length on time that this can take.
     What do you do about help with personal bills, medical bills and prescriptions in the meantime? I've run out of money and need help.

Deb's January 12 reply to Pat W's January 9, 2004 - Hi, I am very interested in your post regarding edema in other places. My daughter often says her stomach feels funny and sometimes it looks really bloated. How did they find that you were retaining fluid in the liver area? Deb.

Jon's January 12 reply to Deb's January 12, 2004 - Hi Deb, Feeling (tapping, pushing, and feeling) the liver area is a standard part of a physical exam from a CHF specialist. The physical exam is critical to managing CHF - that's why a CHF specialist is so important. Jon.

Sheryl C's January 12 reply to James' January 10, 2004 - Hi James, Congratulations on losing 75 pounds. The big thing with diabetes is not to cheat. Get on a low carb diet and stick with it. Have your doctor tell you how many carbs you need a day, then go for it. I don't like the low carb diets that don't allow fruit. Just make sure it is fresh fruit, not juices or canned, and that you count it in your day's total.
     Learn the carb amounts of all food groups and always plan your meals ahead of time. When you are hungry, make sure you have something on your diet to eat.
     Why aren't you exercising? Have you discussed this with your doctor? If you can, you should be doing some form of exercise. Take your meds as ordered, eat reasonably and exercise. Those are the tricks of controling the disease. Good luck, Sheryl C.

Amelia's January 13 reply to Kathy's January 7, 2004 - Hi Kathy, I have been on Coumadin therapy a little over 2 years. It really is difficult with some people to get stabilized. My doctor told me that your body does the regulating more so than the food you eat. I have been on a roller coaster and have my INR checked every week, sometimes every 5 days.
     Your meds, pain and illness (colds, etc.) will affect your level and if you go off Coumadin for surgery, that will really throw you off. I was letting Coumadin control my life at first, which didn't help. Now I eat and do whatever I want since it doesn't seem to have any effect. I think you should insist that your INR be checked every 5 days or once a week at the most. Good luck and the best to all, Amelia.

Katherine H's January 13 reply to Vicki J's January 12, 2004 - Hi Vicki, I have a pacemaker and you really can't tell it's there. It doesn't stick out at all and my scars (I have a very large one - 2 really, since they had to move it after the initial implant due to a frozen shoulder) have virtually faded into the skin. Mine is not under muscle so I think you would be fine. Good luck!

Henry C, January 13, 2004 - Hi, I'm scheduled for a pharmacological stress test next week and am a bit anxious about taking it. Are there many risks involved in taking this test? I've been experiencing shortness of breath lately and my doc wants me to have this test. I was diagnosed with CHF two years ago. Prior to CHF, I also had a bypass and later needed a stent. Great shape, eh?
     I was wondering if you have heard of other tests comparable to the pharmacological stress test that are kinder on the heart. Thank you very much for your time and for a great info site. Henry C.

Pat W R's January 13 reply to Kathleen's January 12, 2004 - Hi Kathleen, I understand the SSD dilemma. I applied twice too, and was denied twice. I finally decided to get an attorney. I had to pay him 30% of the back pay, but only at the time of settlement. If I can remember correctly, the EF cutoff for "automatic" approval is 30%. It also helps to have your cardiologist or CHF specialist on your side.
     Even with an attorney, it took me 9 months from appeal to receiving any monies. Since I was no longer working, I applied to every city, county and state agency for help. Because my husband worked, I was denied everything. That really burned me, because of all the years I worked and paid taxes. Of course, that's another story.
     Try every agency that is available, try patient's assistance for your meds (ask your doctors) and turn to your community if times get really hard. I wish you the best and you will be in my prayers. Keep the faith, Pat W.R.

Jon's January 13 reply to Pat W R's January 13, 2004 - Hi Pat, I may be out of date, but I thought that a lawyer could only charge 25% of your initial benefit check, by law, and no more. Also, although the SSA "Blue Book" says that a 30% EF or less indicates disability, it is no guarantee. I was denied with an EF of 13% and many people have the same experience. There is no mandatory consistency in SSA regarding SSD. Bummer, ain't it? Jon.

Pat W R's January 13 reply to Deb's January 12, 2004 - Hi Deb, I never had a CHF specialist, just a general cardiologist. I had been having this feeling of extreme fullness, gaining weight (on the scale) and rapidly growing out of my clothes. I had this constant feeling of nausea, feeling of a pill stuck in my throat, extreme SOB, and no energy. Not until I found this web site did I figure out what it was. Like Jon stated, they should find that in the basic exam. My cardiologist did not.
     I suffered for months before I knew what was wrong. Watch your daughter's weight daily. If there is an increase of 2 or more pounds from morning to morning, there should be concern. Feel free to contact me if you wish. I wish you both the best. Pat W.R.

Pat W R's January 13 reply to James' January 10, 2004 - Hi James, I'm not responding with any suggestions. I just wanted to let you and your wife know that you are in my prayers, and I wish you better health. Keep the faith, Pat W.R.

Vonda, January 14, 2004 - Hi, I read your posts each and every day hoping to gain more knowledge. My mom is a CHF and COPD patient. Why can't family doctors, cardiologists, or pulmonologists recognize heart failure? It wasn't until after mother had her gall bladder removed, a defibrillator put in, and many trips to the ER that we finally found out what she really needed treatment for. She literally quit breathing and the ER doctor asked how long she had been drinking (she never drank alcohol). She was hospitalized for 2 weeks without ever finding the problem that was causing her nausea and edema. I write this in regards to Pat's daughter who has liver edema. I thank the Lord for our CHF specialist. Her name is Victoria and I feel as though she is an angel.
Jon's note: With the BNP test so available, there is no longer any reason for a doctor not to spot CHF in a person with either edema or shortness of breath.

Richard, January 14, 2004 - Hi, There is a new drug called Exanta that is waiting to be approved by the FDA. This drug will end weekly testing and you can eat what you like. If approved, it should be on the market in the next 6 to 7 months.

Pat W R's January 14 reply to Jon's January 13, 2004 - Hi Jon and all, You are correct about the attorney fee - it was 25% of my initial benefit. You are so right: Even with an attorney, it was a long drawn out process. I've known people that have gone to drug rehab a couple of times and receive SSI benefits at the drop of a dime. Some things need to change. Best to all, Pat W.R.

John G, January 14, 2004 - Hi, At the end of October, 2003, I had a severe heart attack in an hospital emergency room. They were able to insert a stent within a few hours and the outlook was good. However, the stent moved and they did not spot it or observe the effects until about 30 hours after the initial insertion, at which point a lot of damage was done. My EF is 15 to 20%. I was in the hospital all this time, of course, being monitored. I am thinking of suing for malpractice. Some of my friends say I don't have a prayer and that this type of thing happens often. If anybody out there has advice, experience, or information, I would very much appreciate it - please reply by e-mail. Thanks, John G.

Kate, January 14, 2004 - Hi, Now that I have a lovely gastrointestinal flu I need to know if Immodium (loperamide hydrochloride) is a happy combo with CHF meds? Does anyone know? Kate.

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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