The paperwork never ends The Archives
November 1-15, 2006 Archive Index CHFpatients.com

Ivy D 11-2     I'm scared, my husband - heart failure and life style
 
Patrick M 11-2     iodine therapy questions
 
Jon's 11-2 reply to Patrick M's 11-2     iodine therapy
 
Lowell P 11-2     seek others experience with clots and warfarin
 
Lori A's 11-2 reply to Margaret D's 10-30     NSAIDs and heart failure, and more
 
Jack S' 11-2 reply to Jon's 10-26     seek others in a similar situation
 
Jon 11-2     income level
 
Val L's 11-2 reply to Jon's 10-31     seek ACE inhibitor experiences
 
Nancy S' 11-2 reply to William B's 10-17     Coreg & low blood pressure, depression, work & more
 
Jack S' 11-4 reply to Jon's 11-2     testosterone in my situation
 
Sarah K's 11-4 reply to Dorothy M's 10-20     Coreg experience and more
 
Karen K's 11-4 reply to Lori A's 11-2     NSAIDs and illness
 
Stephanie H 11-4     payroll deduction for charity possible
 
Donna V 11-4     seek aorta problems experiences & end-stage CHF info
 
Roger H 11-7     hot flash experience
 
Nancy S 11-7     NSAIDs, arthritis, pacemaker experience
 
Maryann H 11-7     can magnesium help PVCs?
 
Mary C 11-7     can a drug cause heart valve damage?
 
Scott B's 11-7 reply to Ivy D's 11-2     post-illness behavior
 
Jon 11-12     long week
 
Giorg's 11-12 reply to Dan G's 11-7     wrong ICD settings
 
Ivy D's 11-12 reply to Scott B's 11-7     coping with post-CHF changes
 
Scott B's 11-13 reply to Dan G's 11-7     watching over our own care
 
Tunny G's 11-13 reply to Dan G's 11-7     CRT pacer made all the difference for me
 
Nancy S' 11-13 reply to Dan G's 11-7     can your device be interrogated over phone line?
 
David W's 11-13 reply to Dan G's 11-7     device programming makes all the difference
 
Don P 11-13     seek specific mortaliy stats on heart failure
 
Brenda T 11-13     seek high altitude experiences
 
Christine S 11-13     can meth cause heart failure
 
Donna H 11-13     can zaroxolyn cause these problems?
 
Tony M 11-13     readers have valuable advice, CPAP in this case
 
Donna V 11-14     update, thanks for free Coreg info
 
Ben B's 11-14 reply to Ivy D's 11-12     habits, don't rely just on numbers
 
Mary C 11-14     update on condition - this board is the best
 
Tom S 11-14     CPAP, oxygen, other alternatives for sleep disorders
 
Norma W's 11-14 reply to Jon's 11-12     Restless Legs Syndrome
 
Joseph A 11-14     medicine keeps advancing
 
Bill H's 11-14 reply to Donna H's 11-13     zaroxolyn flu-like experience
 
Doug H 11-14     seek experiences with liver problems
 
Dan G 11-14     thanks to all, and to Nancy S
 
Barb N's 11-14 reply to Brenda T's 11-13     higher altitude experience
 
Sandy N 11-15     Boston Scientific's (Guidant's) newsletter
 
Mary C's 11-15 reply to Tom S's 11-14     CPAP for sleep apnea
 
Roger H's 11-15 reply to Tom S's 11-14     CPAP - the right equipment makes the difference
 
Tom S 11-15     from a different perspective
 

Cheryl C, October 31, 2006 - Hi all, I write this message just as a word of caution to everyone: "Things are not always as they seem." If you recall, I wrote in at the beginning of the month about my shortness of breath. I also mentioned that my weight was stable, so I didn't think I was retaining fluids and needed a diuretic (I don't take one).
     Well, it turns out that I was correct, but I did have a problem that wasn't just standard heart failure shortness of breath. My breathing problems increased to the point that I thought I needed to see my PCP, so I did last Friday and guess what? I had walking pnuemonia! There was fluid in my lungs with no visible sign of water retention, and it has responded dramatically to antibiotics in the last 3 days. Since I did have a pnuemonia shot last year, it never occured to me that this could be the problem. I was told that even with a pneumonia shot, it is possible to get pneumonia, but it would be a much slighter case. This may not happen to anyone else, but just in case it does, remember not to take anything for granted.
     It's so easy to blame everything unpleasant on heart failure, but sometimes it's a visit from another demon. <g> Oh, I also felt at the time that I had a case of bronchitis. I did have that also, along with a sinus infection. Wow, am I a lucky girl or what? It appears that all of this did not throw me back into heart failure, which was my biggest fear. Better health to all! Cheryl C. cocojo86@yahoo.com


Mark M, October 31, 2006 - Hi all, I am looking for a CHF specialist in the Seattle area. Can anyone recommend one? Thanks. rainycity13@yahoo.com


Val L, October 31, 2006 - Dear Jon, I have truly tried several times to donate through PayPal but it is always rejected because I apparently fill in the form incorrectly. I admit I am not brilliant on the computer. I live in the UK and am now bed-bound, so it would be difficult to pay any other way. I would be so grateful if you would nevertherless print my message.
     My heart failure is worsening rather rappidly. I consider I have a mitochondrial heart failure, which is difficult to diagnose. I have a hot solid-feeling midriff, all the veins in my shoulders, neck, and especially head (back and front) feel very tight. I have a permanent headache, especially in my temples (head). My vision becomes blurred and my y knees buckle. I am very tired, feel sick, and have no appetite. My heart very often becomes hot and I put ice packs on it. I have a "bubbling" sound in my left lung. In spite of all this and an irregular heart beat, no diagnosis of heart failure has been made.
     I wonder if there is anyone here from the UK who could recommend a heart-failure specialist. The hospital where I live is very small. If there is anyone else who feels they have this condition or feels they could help, I would be so pleased to hear from them.
     I am prescribed bisoprolol and GlycTrin spray. I am wary of diuretics as I don't want to be up too often in the night. How do others cope with this problem? I have tried three natural products: CoQ enzyme, D-ribose and acetyl L-carnitine, but they are not enough to stop the deterioration. It would be good to hear from you. Best wishes. Val L. stormyc@onetel.com
 
Jon's note: Hi Val, Posting is never related to donating! Have you tried L-arginine or creatine monohydrate? See chfpatients.com/stew/nutrients. Also, ask your doctor about an ACE inhibitor. Have you had an echocardiogram?


Ivy D, November 2, 2006 - Hello, I posted awhile back about my husband Chris, who is age 45 and was diagnosed with CHF this past February. His EF was 12% and prognosis was not very positive. He made a surprising recovery and had an EF of 45% for his past two echos. Today I was informed by his doctor that his EF has dropped to 30%.
     I am posting because I am so angry. I found out he has not been taking his supplements for about two months, and I have noticed an increase in his drinking, about 4 drinks a week over the past two months. I don't understand why he would risk his health and now with this news I am not sure how to be supportive.
     I am very scared. I am not sure he will get a chance to recover his heart function again. He says he was feeling so good, he just felt like he was better. I was so hopeful he would be around for a very long time, but now I am just scared. I am young, age 35, and I have been with him for 20 years. We have 7 children. I just don't understand.
     We are scheduled to see the doctor Friday. I don't know what they will want to do. Any suggestions for me would be very helpful. You won't find him on a message board. I am somewhat alone in this. altbirth@hotmail.com


Patrick M, November 2, 2006 - Hi Jon, I have a friend whose life was saved by her starting on iodine and she has since done a lot of research on it. She says the following and I'd like to know your thoughts on it for us CHFers:

I've been doing some research into iodine deficiency and have learned that some cases of IDCM (idiopathic dilated cardiomyopathy) in males are caused by iodine deficiency. Supporting thyroid function and high dose iodine/iodide supplementation is the treatment of choice for many alternative medicine practitioners. This is also true for some other insidious heart conditions.
     I mention thyroid function because a deficiency in iodine will usually affect thyroid function, which will in turn affect the entire metabolism. In some cases, thyroid antibodies appear as a result of iodine deficiency, causing Hashimoto's or Grave's Disease. The usual course of mainstream medical treatment involves either surgical removal of the thyroid gland, which can result in serious health effects later on. However, alternative medicine shows that addressing the underlying cause and replacing thyroid function via desiccated thyroid meds will lower antibodies, and when the iodine deficiency is reversed, antibodies disappear and the patient returns to health. Most foods that once did contain iodine, such as flour to make bread, now contain bromide and other substances because they are less expensive. Bromide is used to condition flour, however bromide replaces iodine in the body's iodine receptors. Flouride in toothpaste also may replace iodine as bromide does.
     Start at 50mg a day for 3 months and then a maintenance dose of 12.5mg daily. It is too bad that something so simple is ignored and belittled by mainstream medicine. At one time iodine therapy was the ultimate cure-all.

God bless. Patrick. NarleyHarleyGuy@webtv.net


Jon's November 2 reply to Patrick M's November 2, 2006 - Hi Patrick, As you have noticed, I very heavily edited your friend's "research" on iodine. That's because it's not true. If you have an iodine deficiency, you need supplementation or you will suffer bad effects, including heart problems and goiter. However, you need very little to stay "balanced". Saying iodine used to be a cure-all reminds me that cocaine and radium were also once considered cure-alls sold over-the-counter, but now we know both will kill you.
     Like sodium, the human body requires only small amounts to thrive. It's very true that if you don't get enough - or if your body doesn't for some reason process it properly - bad things will happen to you. Note that under our Causes of heart failure page, thyroid dysfunction is listed as a known cause of heart failure. However, much of what your friend said was frankly just so much horse puckey and I won't repeat it here.
     One of the standard tests a CHF specialist will do is a test that determines thyroid function (see www.endocrineweb.com/tests.html for details on testing thryoid function), but if you're not iodine deficient, why would taking more iodine help? Your friend even said that anyone with a big belly is iodine-deficient. Maybe they just eat too much and exercise too little? ;-)
     Please note that I stress both proper nutrition and supplementation for heart failure, but only when there is a reason to support it. Jon.


Lowell P, November 2, 2006 - Hi all, I have CHF and poor left ventricle function. I have been taking warfarin for two years. Either during or shortly after bypass surgery, I developed a blood clot in my ventricle. The advice then was when the clot dissolved it would be wise to stop the warfarin.The clot has dissolved 18 months ago and my new cardiologist suggested I stop the warfarin as did another cardiologist, however, my PCP believes it would be wise to continue. I worry about bleeding from a fall or injury of some sort. I wonder if anyone else is dealing with this dilema? I would like to hear from others with this question. Lowell in Arizona. Lpepper3m@aol.com


Lori A's November 2 reply to Margaret P's October 30, 2006 - Hi Margaret and hi to all, I also read that NSAIDs are not appropriate for all patients, and sincerely questioned whether or not I should take Mobic. I have been taking it for around 2 years though, and so far I haven't had any problems with it. I also take Coreg, Altace, Norvasc, digoxin, Zocor, and aspirin. In addition to the Mobic, I now take Lyrica. I am up to 20 different types of prescription meds per day now for assorted health issues. What a pharmacy! Twenty is when I'm "healthy" and not having to take anything extra!
     I see my pulmonary specialist, rheumatologist and cardiologist on a regular basis, and none of them worries about my large combination of meds. I think that you and your doctors have to consider the risk associated with taking a medication to the good it might do for you.
     Jon, thanks for running this web site! It's really helpful to hear about other people that share similar experiences. simpleefine@hotmail.com


Jack S' November 2 reply to Jon's October 26, 2006 - Hi Jon, Thanks for posting the web site financial data. I don't have a lot of resources so I am careful how I use them. I had no idea anyone could provide such a fine web site with so little resources. The service you provide deserves financial support from those of us who can.
     My EF is 30%. I was diagnosed with CHF in July of 2006, with a 5-way bypass in 1999. I had low blood pressure with orthostatic hypotension. I receive a pacemaker implant in July of 2005, and due to very erratic heart rate and blood pressure making it difficult take my blood pressure at home with a machine. My EF dropped from 55% probably as a result of a severe case of pneumonia in 09/2005. I had a radical prostectomy in 1989, which recurred in 2003 with an orchiectomy in 2004. My heart and other health problems magnified once the testosterone was shut off. I am 85.
     The only medications I take are Midodrine, Lasix (once per day), Estradiol, and potassium. The usual CHP medications are contrindicated with low blood pressure an Midodrine. I get very lightheaded at times, I believe because of hormonal disorders, however there are a few good days. Does anybody out there have both CHF and have taken or are taking ADT for Advanced PC? jspringston@carolina.rr.com
 
Jon's note: Why don't you take testosterone supplementation such as Androgel? I do and it makes a world of difference to a man with very low testosterone levels, believe me. My level without it is well under 100.


Jon, November 2, 2006 - Hi everyone, In response to questions about my income, yes, I receive about 9 to 12,000 a year in donations. I get only a percentage of donations personally to live on, with the rest funding the site in all aspects. So I actually live on about 6,000 dollars a year. Disability paid a lot better. ;-) Jon.


Val L's November 2 reply to Jon's October 31, 2006 - Thank you Jon, for your advice. I haven't tried creatine yet but will certainly give it a try. My echocardiogram was some time ago before my symptoms became really severe but I will have to wait at least 6 months to have another unless I could afford to have one done privately.
     I have never been prescribed an ACE inhibitor but the more I read about them, the more I think I need one. I would like to ask members if they have found a good ACE inhibitor with little toxicity. I realise that they react differently in different people but I have nothing to go on at present and I see that some may cause insomnia. I have this problem already and don't want to add to it. Many thanks. Val. stormyc@onetel.com
 
Jon's note: I like fosinopril because it's once a day, and is partly handled by the liver and partly by the kidneys, so kidney strain is not an issue. I also have insomnia.


Nancy S' November 2 reply to William B's October 17, 2006 - Hi William, Kim, and everyone, I wanted to reply to William's comment that he can only tolerate Coreg at 6.25mg due to low blood pressure. I also had low blood pressure for about 4 years after being diagnosed, but within the last year my Coreg dose has been increased to 12.5mg. I am tolerating it fine this time. We tried increasing it a couple of years ago and had to back off. I hope you will find that yours will increase so you can be on a higher dose eventually. I will say that I am not one who feels really bad when my blood pressure drops, since it's always been in the low normal range. William, I also have an ICD, without a defibrillator. It has made a marked difference in my life.
     Kim, I have had depression for a long time but especially after being diagnosed. Mine lasted about a year until I decided that I was not going to die overnight. I still work full-time, although I'm off right now due to back problems and may possibly have to have surgery, depending on what tests show.
     Sometimes I want to just give up and file for disability but then I realize that I can still funtion and as long as it's possible, I'm better off working. My job is demanding since I work with mentally challenged individuals (16 women living in my residence) and I also supervise anywhere from 18 to 23 staff. There is a lot of physical work as well as mental stress to deal with. It makes me feel needed and important that I am doing something with my life to help others.
     Jon, I sent a donation through Paypal and just in case you're curious about the amount, it was a credit I had on my account. <lol> I didn't just decide that was the amount I needed to send. I felt that it would make a little bit of difference to help maintain the site. Thank you again for all the hard but wonderful work you do. You also have a job that makes you important to everyone who passes through these forums. God bless you and everyone who gathers here or passes by.
     Sorry this is so long, I guess I'm windy today! Nancy. ns1@alltel.net
 
Jon's note: Actually, my wife tracks donations so I only look at them once a month. I'm usually amazed by at least a few. Once, the ornriest person I know donated so much I could buy a new computer for doing the site. Often, lurkers donate, and I don't even know who they are. That feels good because I know people are being reached whether I know it or not.


Jack S' November 4 reply to Jon's November 2, 2006 - Hi Jon, Testosterone is food for PC cells. PC support forum leadrs advised against it, except as a last resort. I tried Tetim gel, which is like Androgel and found it increased my libido but I did not get the immediate heart benefit I expected. My PSA went up more rapidly than I hoped, so I quit after 3 weeks. I probably should have stayed on it a full 3 months to realize full benefit. My original plan was to stay on it until my PSA went to 10, but I quit at 1.6. jspringston@carolina.rr.com
 
Jon's note: Hi Jack, My main reasons for going on it were to improve serious mental and memory dysfunction, as well as fatigue that was almost literally killing me. Too-low levels can also cause liver damage and other problems. I have no ideas of the risk versus benefit in your case but it also improves sleep.


Sarah K's November 4 reply to Dorothy M's October 20, 2006 - Hi Dorothy, Your story sounds great! I was on Coreg at 25mg twice a day and lisinpril for years, and had awesome EF test results until July of this year. I loved Coreg; I was even part of a trial for the drug. My decompensation was so fast it was pretty obvious heart transplant was the only solution. I'm actually pretty excited for it, if you can believe it! I hope that you continue to do well. sarah.kellhofer@gmail.com


Karen K's November 4 reply to Lori A's November 2, 2006 - Hi All, Just a comment regarding NSAIDs. I have severe osteoarthritis in my back and am in pain most of the time. I was taking Celebrex (I honestly can't say it did any good) but my CHF specialist decided I should stop taking it. I really do rely a lot on his judgement as I feel he is quite knowledgable. He has tweaked several of my meds. My kidney function isn't normal so I currently only take Lanoxin on Monday, Wednesday, and Friday. I only take Lasix (40mg) on Sunday, Monday, Wednesday, and Friday, and Aldactone (spironolactone) at 12.5mg on Tuesday, Thursday, Saturday, and Sunday. It's quite a feat keeping track of what to take when, but so far I'm okay with it.
     I am also very well compensated. I was diagnosed in 1991 and have (thank you Lord) only been hospitalized once since my diagnosis. I really think I wouldn't necessarily have to take the Lasix as I don't seem to retain fluids so far as I can tell. I guess if I were you, I would certainly ask my cardiologist about the anti-inflammatories. Just my opinion. Karen K. karenk@machlink.com


Stephanie H, November 4, 2006 - Hi all, I posted this same message last year but thought it was worth repeating. I just wanted to pass along some information. My company participates in an annual charity campaign drive (similar to the United Way) which allows for payroll deduction for charitable contributions. This particular agency allows for write-in charities of your choice. I was able to go online, write-in CHFpatients.com and sign-up for donations. What a great way to go! It comes directly out of my paycheck - so I don't see it, I don't have to struggle with remembering to send a donation.
     I would like to encourage all who are able to do so, to check it out with your employer. If they participate in the United Way campaign or some other agency, see if there is a place to write-in a charity. These campaigns are only open for a limited time each fall so don't delay! I believe that the donations are made on a quarterly basis. I've been receiving confirmation that the donations are being received - so I know it works! howsares@saic.com


Donna V, November 4, 2006 - Hi All. I'm just now checking up on posts. I need prayers I think, and as much as I "talk" to my dilated ascending aorta to go away, I don't think they actually do that.
     I have the six month CT scan again on Monday. My visit with my cardiologist was otherwise uneventful and I remain the poster woman for the BiV pacemaker. I am not experiencing any noticable CHF symptoms other than my usual dragged-out feeling which I attribute to life saving meds as much as condition and I move a lot better (and live better) than before biventricular pacer.
     I remain very sodium versus fluid conscious. The CT is a second, following my first one six months ago. If the dilation is enlarging it seems that surgery is my option. My cardiologist did mention the new stent procedure. I'm jumping way ahead but I am appprehensive and still tend to borrow trouble.
     Has anyone with cardiomyopathy/CHF dealt with this too? Apparnetly, the dilated ascending aorta is not related to CHF or so they say. If my heart size has decreased after the pacer implant to almost normal, why not that part of the aorta?
     Another general question I have regards my 90 year old dad and my best friend's 88 year old dad. She and I are both realists but both fathers seem to be in and out of the hospital more and more often with CHF and kidney failure. Is the kidney failure more from their age or CHF? Do we all get to look forward to that too? Can increased Lasix do a thing for the kidney failure? Another check will be on the way soon.
     This site has saved my life and my limited sanity, Jon. Donna V. dmvditty@aol. com


Roger H, November 7, 2006 - Hi, I know it has been talked about here before about the hot flashes. I was getting one a week for a while and they finally stopped for a while. I was always somewhere that I couldn't test for anything, but today I was home. At the first sign of getting hot and breaking into a sweat (totally soaked my shirt), I took my blood sugar reading of 68, which is low but not really low. Then I took my blood pressure and that was 99/60, which is close to normal for me.
     I'd been told before by nurses and doctors that one of the two were very low. Anyway, I had a little snack and 15 minutes later (feeling much better) my sugar reading was 80 and my blood pressure was 80/50. Kind of weird? My wife says I'm not normal anyway! This always makes for stories to tell later - and a chuckle. rkharmony@highstream.net


Nancy S, November 7, 2006 - Hi all, I don't know why I keep trying to say I have an ICD when actually it is a biventricular pacemaker. I went to the CHF doc the other day and thought I was really doing well. He told me that although the chemical stress test I had done a while back was okay, my heart is still weak. I had just had my pacemaker interrogated at his office right before I saw him and the technician said everything looked good.
     I've been having problems with back pain for a long time so I was finally sent to a neurosurgeon who found that I have nerve damage and muscle loss. I have spinal stenosis and degenerative disc disease at several levels so I'll need a myelogram and has referred me to a surgeon for that.
     I also take NSAIDs and have for 20 years. My doctors all know I take them and monitor my blood every 3 months. I also take prednisone every day. Sometimes it is better to take the meds and keep a check on any effects they are having than to not take them and risk pain and more damage. I have rheumatoid arthritis as well as osteoarthritis. I think I would have been completely bedridden at least 4 years ago if not for the arthritis meds.
     Donna, you will be in my prayers and I'd love it if you would all remember me in yours. Nancy. ns1@alltel.net


Maryann H, November 7, 2006 - Hello, Has anyone heard of magnesium helping with PVCs? My son, who has IDCM has PVCs and the doctor recommended it for them. mahall1958@hotmail.com


Mary C, November 7, 2006 - Hi Jon and all, I am pretty desperate. I can't find information where a drug can cause heart valve damage. I was doing real well but now it looks like I may have mitral valve stenosis, which showed up on yesterday's echo. Help! mhcarrs@aol.com


Scott B's November 7 reply to Ivy D's November 2, 2006 - Hi Ivy, I have some experience with "stubborn" patients (who do not want to face the truth). My father never bothered to learn that 2000ml of liquid was the equivelant of 8 cups. First, I doubt your husband is drinking to purposefully make you and your family upset, so it would be good to find out why he is drinking. Is he really drinking four drinks per week, or do you only know about four? Did he always enjoy drinking before he was diagnosed with a condition? Is he drinking to prove to himself he is as good as new? Is he testing his own limits? Is he drinking to deal with the reality of a serious medical condition?
     Second, find out what his cardiologist says about having a drink. Some cardiologists might feel a glass of wine, or a single beer is okay. If you want to be really sneaky, ask the question when both of you are in the same room as the doctor. You will both hear the same reply. Find out if alcohol could be related to the EF readings.
     Realistically, people can only change themselves. I personally know that nagging just does not work (it often pushes the behaviour "underground"). Once in a while, I will still have a single beer (but few and far between). Best of luck. Scott.Brown@sunlife.ca


Dan G, November 7, 2006 - Hi Folks, I have a question. I've had an ICD for 10 months now and there have been ups and downs but a few months ago I went in for a device check and came out okay, but I haven't felt right since. My heart rate was elevated, as was my blood pressure. I went to my family doc and he couldn't find anything wrong. I even went to my cardioligist and he gave me more drugs!
     Then this morning I went in for a scheduled device check and the new technition was all confused. You are probably all aware that during these check-ups they may speed up or slow down your heart rate, testing the device. Well, during my last visit when the guy was interrogating my device he ran my heart rate up over 100 beats per minute however he forgot to put it back down to 60. Thus my device - intended primarily for defibrillation - has been pacing for the last 4 months!
     The nurse today corrected it but wouldn't answer any questions. I'm curious as to possible adverse lasting side affects from this other than the discomfort I felt for 4 months. Any adverse effects to my Medtronic ICD, like battery life? Any responses welcome. Thanks. Dan. dgraham@sbsalaska.com


Jon, November 12, 2006 - Hi everyone, Well, between locksmiths, movers, piano movers, doctors and family visits, I've just been too beat to do much else. It turns out my restless legs are waking me up between 25 and 55 times a night, so I'm starting a med for that before trying anything for my airway at night. My insurance won't pay for a CPAP so we're exploring another option. This is a pathetic start on catching up posts, but it's a start, and I will catch up soon. Jon.


Giorg's Novemger12 reply to Dan G's November 7, 2006 - Hi Dan, I've never heard a story about an ICD like that. I am astonished. In response to your question: Yes, theorically pacing a heart with not ischemic dilated cardiomyopathy can damage the muscle in the long run. That is why we, with non-ischemic DCM (except those with a biventricular pacemaker), are paced only under a very low heart rate. But if your echo is the same as 4 months ago, maybe you did not get any damage from that silly Medtronic technician. About batteries, pacing uses battery, so your ICD will need to be changed a bit sooner (but I think it is a matter of only some weeks). giorgclunei@hotmail.com


Ivy S' November 12 reply to Scott B's November 7, 2006 - Hi Scott, Thanks for your reply. I don't feel that my husband's behavior is meant to hurt me or our children, although it certainly can. I think he drinks to feel like he is a part of his old life style. We have been wine lovers for about the past 5 years and I know he really misses this experience with friends and family. I know part of him wanted to believe he was better. We had such positive EF increases over the first 5 months after his acute onset of CHF.
     After looking further within myself, I have to admit that I was enjoying having a glass or two of wine with him as well, and also wanted to believe we were in the clear. I think this can be normal behavior, it just comes at a high price. He is actually looking over the Nutrient Stew and putting together a nutrition supplement list for himself so this is encouraging.
     I don't nag him. I love him and I want him to live as long as he can. I need to be willing to sacrifice as well. This is a huge life change and I think we will have many adjustments to make as time goes on. Again, thank you so much for your support and thank you Jon, for this web site. Your research goes a long way for my "nursing degree" husband. It is important for him to see the studies. altbirth@hotmail.com


Scott B's November 13 reply to Dan G's November 7, 2006 - Hi Dan, I'm unable to answer your main question about whether your heart beating at 100 beats per minute for 4 months can cause damage or have lasting effects. I would suggest obtaining the opinion of an outside cardiologist. I would imagine the nurse or technician did not want to discuss it - just in case there was some ramification. I'm not surprised a family doc could not detect an issue, but a cardiologist should have detected it. I assume your cardiologist does not have the ability to interrogate the device himself.
     There is one reality here which can not be overlooked. Doctors, technicians and nurses are all human. In theory, we would like to feel we could defer all medical care to them, but I know from experience (and what I observe in this forum) that your best chances come from taking an active interest in your own medical care.
     Dan, I bet you will always ask them to double check your ICD settings before they end the interogation. At very least, the experiences shared on this board help educate us to be our own advocates so we can get the benefits.
     My father only knew his meds by color (not function). His ICD zapped him twice because it was not tuned properly, and they never detected it until he went in for a routine checkup. As a result, he was often prescribed medications which conflicted, had negative side effects from anti-anxiety meds, allergic reactions, high potassium or low potassium. When a paramedic took him to the hospital, I questioned the use of saline solution (which was accomplishing the opposite of shortness of breath).
     Regardless, thanks for sharing your experience. Scott B. kitchenerguy@rogers.com


Tunny G's November 13 reply to , 2006 - Hi Dan, Very briefly, I had an ICD for 16 months, was not able to do very much without feeling a tightness. Recently (6 weeks ago) I had a CRT-D (CRT pacer/ICD) by St. Jude implant. Results for me are unbelievable. I can now do so much more, rest better, feel so much better and have not had tightness or pain at all even after doing so much more than I have been able to do with the ICD. The CRT device has been set in accordance with my body and my particular heart problem (being heart damage due to a virus) and is not an in-the-box setting. It's like getting my life back, so wonderful, I thank God, my doctors and the hospital staff for this.
     Also, I thank Jon for endless efforts for this site that enable us to communicate as we do. Thanks again Jon, and God bless you and your family. tunnyg@yahoo.com


Nancy S' November 13 reply to Dan G's November 7, 2006 - Hi Dan, I'm just curious about how the nurse corrected your pacing. I have a biventricular pacemaker but like you, mine has to be interrogated by the Medtronic tech and they make corrections at that time. Mine cannot be done over the phone like most can, so I just wonder if yours can be. I can't imagine having to go that long with your heart pacing that high. It makes me almost nauseous just for the brief time it's elevated for the test. I'm glad you got it corrected. Nancy. ns1@alltel.net


David W's November 13 reply to Dan G's November 7, 2006 - Hi Dan, The way your ICD is adjusted can make all the difference. On my last check up, I felt horrible and could barely function. My heart doc turned up my pacemaker from 60 beats to 75 beats a minute and it made all the difference. The blood started flowing again and I went back to work part-time and feel pretty good as long as I dont push myself too much.
     It seems like 100 beats a minute would wear out your heart faster and not be good for you. All I know to tell you is that if something does not feel right, bug the docs until they find out what is wrong. I go on November 17 for another pacemaker check up. The adjustments can make a lot of difference. wilsond537@aol.com
 
Jon's note: Just wanted to note that this is all correct. Stay on top of your doctors and techs.


Don P, November 13, 2006 - Hello, I am looking for a site that has recent mortality statistics for CHF broken down by age and severity. I've found several that are from 2001, but there have been quite a few changes since then. I was recently diagnosed (last Friday) with HF and an EF of 15%, so I'm in the learning phase right now. donp@enjoysailing.us


Brenda T, November 13, 2006 - Hi, I am new to this board. I am a 52 year old female. I was diagnosed with dilated cardiomyopathy in 2002 of unknown cause. I had a heart attack when I was 39, which left 30% heart damage. I have an appointment with my cardiologist in December, but am hoping to get some input from others on this board. I live just about sea level on the east coast. I will be spending a couple of weeks in near Kanab, Utah in April and May, which is a mile high in altitude.
     Someone mentioned the high altitude may affect my heart. I will be at Best Friend's Animal Sanctuary for a week. Does anyone have any experience dealing with high altitude? Is there anything or any meds that your doctor suggested for you? Thanks in advance. I am still trying to understand this condition, but I have a very positive attitude about it.
     Thanks in advance, Brenda. cottagecatsllc@aol.com


Christine S, November 13, 2006 - Hello all, Please, this question is very important to me. Can dilated cardiomyopathy (left venticle damage) possibily be caused by this terrible epidemic drug called crystal meth? Any input would be greatly appreciated. Christine S. Csue7782@aol.com
 
Jon's note: Yes.


Donna H, November 13, 2006 - Hi, Last week when my husband went for a check up and a flu shot, the doctor started him on additional diuretic. The name is metalozone. He went from 248 pounds to 233 in about a week, after only two doses. He lost 6 pounds the first day. He began feeling ill but attributed it to the flu shot. He got progressively more ill with vomiting, so I called the doctor. They said not to take the metazolone for another week or two and then only twice per week.
     He is feeling a little better now but still believes it was the flu. I tend to agree with the doctor and think that he had an electrolyte imbalance. His other two fluid pills are Aldactone (spironolactone) and 80 to 160 mg of Lasix (depending on weight gain) which he is continuing to take. He is on restricted fluid of 2 liters per day.
     Is anyone else here taking metalozone? What has your experience been with it? chuckndonnah@msn.com
 
Jon's note: My experience with it (zaroxolyn) was okay, but it should be taken 30 to 60 minutes before Lasix. Why in the world would a doc who suspects electrolyte imbalance not blood test it when starting such a drug?! Electrolyte imbalance can be fatal - insist on blood testing immediately whenever starting a diuretic. The usual dose of spironolactone has no diuretic effect, but improves mortality - Inspra is better.


Tony M, November 13, 2006 - Hi, I wrote recently about my CPAP giving me a hard time getting used to it, knowing it will take a year of sleeping with a CPAP to get to feeling normal. Some other readers give some tips about their CPAP machines and how long they used them. One guy said the nasal pillows were the Bees knees and was he ever right! I was having a problem where I could never get into a sleep pattern to overcome my lack of sleep so I could get better. I would get a new mask (tried 4 different ones) and it would be the same irration, skin swelling, no sleep until I was completely exhausted. I got the nasal pillows and in two days I feel much better I sleep all night and now crave sleep, which is common this first year of using my CPAP.
     It's not a done deal getting a CPAP and you go home and you'er fixed from sleep apnea. It's something I will have to do the rest of my life and it took me seven months to get a suitable way to wear a mask for the machine. Thanks to the readers for writing to Jon's forum - your advice prodded me on to try the nasal pillows. ynotmyrick@yahoo.com


Donna V, November 14, 2006 - Hi Jon, I don't know whom to thank now but someone made a post about going to the Coreg web site for a month's worth of free Coreg. I did it and forgot all about it. Yesterday a packet came with all manner of information and a coupon for for a free month's supply. My pharmacist assures me they will be reimbursed. So thank you to the person who made that post.
     I had a bit of good news this week. My second CT scan for my recently discoverd dilated ascending aorta came back as "no change." I shall be doctor-free for 6 more months! My biventricular pacemaker checks and PT blood lettings do not count as being stressful. So in April I suppose I'll have yet another CT and I hope another annual echo just to satisfy my curiosity. As far as the cardiomyopathy and CHF goes, I think I'm holding my own. Thanks again. Donna V. dmvditty@aol.com


Ben B's November 14 reply to Ivy D's November 12, 2006 - Hi Ivy, I just read your post. I do not know anything about your circumstances, and agree that your husband should stop drinking and it is probably good for him to continue his supplements. I doubt either of these things had much to do with his EF, but they don't help.
     One thing I do know - do not obsess over these EF numbers. My EF over the past nine years has varied from 10% to 45% and I have always felt about the same. My last echo I didn't even ask for the stupid number. My doctor basically said, "you're a little lower than a normal EF" and I left it at that. The one common thing I have seen is a lot of people let a number generated by a few sound waves bouncing off their heart dictate their lives. I have seen people with normal or near-normal EFs drop over dead, and people with under-30% EFs go on and on like the Energizer bunny. bdbrinkman@juno.com


Mary C, November 14, 2006 - Well, It looks like the results are in. The CHF specialist in UCSF says I don't have DHF but I do have diastolic dysfunction. They caught it in time, because of this board.
     It turns out if I take care of myself (low salt diet, moderate exercise and lose excess weight that I should not develop it. He said I am at very high risk for developing DHF because of high blood pressure, a fast heart beat, and insulin resistance. So I am now a Syndrome X person, or metabolic syndrome (they keep changing the names of things). I've had two heart attacks. The echo shows I don't have mitral valve stenosis, which is good, just PVCs, which he is going to find the underlying cause.
     A CHF doc is more like a detective than a pill pusher. Thanks Jon, without your help I would have been very unhappy with my cardiologist in Fresno, and not know my ability to get the help I need. This board is the best. mhcarrs@aol.com


Tom S, November 14, 2006 - Hi everyone, Is CPAP the medical device of the day or is it a realistic approach to alleviating sleep apnea? For me, CPAP would have been a torture device of choice during the Spanish Insquistion right along with "water boarding" but that's a matter of personal preference.
     I have noticed I am waking up just as refreshed and more importantly, painless in both my head and legs with 2-1/2 liters of oxygen delivered through a nasal cannula while sleeping. The source for the oxygen is an extractor. Perhaps the medical profession and more importantly patients will be offered an alternative to CPAP. With a $2000 to $3000 price tag, plus expensive supplies I can see why the medical community loves CPAP. bigheart@muchomail.com


Norma W's November 14 reply to Jon's November 12, 2006 - Hi Jon, I know this will sound outlandish, but a lot of people have been cured of Restless Leg Syndrome by putting a bar of Ivory Soap under the bottom sheet of your bed. It's an inexpensive thing to try, so why not buy a bar and see what happens? We have a newspaper column by a Dr. Gott here in Florida and he has printed many letters from grateful readers who have benefitted from this. As he writes, "I have no idea how it works, but in the majority of cases, it seems to cause great relief." Regards to all on the forum. Norma W. normadroz@aol.com
 
Jon's note: I'm already seeing minor relief from the lowest dose of Requip and low-dose Lyrica is already helping my peripheral neuropathy in my lower legs and feet.


Joseph A, November 14, 2006 - Hi, Just when I thought I saw everything (that is a Christmas tree mounted upside down) my EP doc discovers a a lead in my ICD that is misfiring and needs to be replaced, and need for another ablation. This spring I had a mini-Maze operation for a-fib (not successful) a new ICD and now this.
     I am becomming an adventure on 2 legs. In 6 years I have had 2 ablations that lasted for a few months, 5 cardioversions that lasted about 40 days each time, one pacemaker and am on my second ICD. I was on enalapril, tikyson, and pacerone. It just bought me a little more time for maybe a cure for a-fib and CHF. I'm not complaining, just giving you hope as to what modern medicine and the grace of God can do for you. Thanks, Joe. chfeer@earthlink.net


Bill H's November 14 reply to Donna H's November 13, 2006 - Hi Donna, I was sick in bed for a week, it felt like the flu. Once I stopped taking it (zaroxolyn) I felt okay then. bj5250@yahoo.com


Doug H, November 14, 2006 - Hi all, Two weeks ago I developed viral gastroenteritis-like symptoms such as nausea, vomiting, and diarrhea. This lasted the better part of a week so I went to my primary care doctor, who ordered blood labs to check for viral infection. Labs came back looking more like Hepatitis A, so I had another blood lab that tests specifically for Hep A which came back negative.
     What concerned my primary care doctor the most was grossly elevated liver enzymes, ALT 1465 and AST 446. My doctor said to call my cardiologist immediately, so I did and they had me stop the statin and amiodarone. I am scheduled for an ultrasound of the liver and after a week of no meds, another liver enzyme lab.
     Can anyone with liver problems tell me more of their experiences? Thanks. deh3271958@hotmail.com


Dan G, November 14, 2006 - Hi, Thanks everyone for your time and words. I'm learning a lot here. Nancy S, you say you're curious about how the nurse corrected my pacing. In fact I'm not sure who she was. She appeared to be a heart clinic nurse but she could have been a new Medtronic rep. I certainly am going to ask a whole lot more questions from now on. dgraham@sbsalaska.com


Barb N's November 14 reply to Brenda T's November 13, 2006 - Hi Brenda, I'm a flatlander and CHF survivor, and I have occasionally travelled to higher altitudes such as Denver or Salt Lake City for a week or two. If you can, spend 3 to 4 days at an intermediate altitude before going higher than 800 feet. I suspect CHFers may be likelier to get high altitude pulmonary edema (HAPE) since a lot of us get fluid in the lungs with exertion or volume overload anyway.
     There is a diuretic called Diamox that may act as a preventive medicine for HAPE but talk to your doctor about potential interactions with your current meds. Make sure that you can either get to supplemental oxygen or to a lower elevation quickly because HAPE is nothing to fool around with.
     My personal experience is that I was okay at a 10,000 foot elevation if I avoided strenuous activity but when I went up to 12,000 feet I knew I was in trouble and had to get down to a lower altitude fast. Be observant, any marked lightheadedness, excessive coughing, blue lips and fingernails means you are higher than you can tolerate. If you can afford one, carry a pulse oximeter to check oxygen saturation. protoplasm2@aol.com


Sandy N, November 15, 2006 - Hi, After Boston Scientific acquired Guidant, they started a newsletter at www.lifebeatonline.com. As for Thanksgiving, I'm still here and very thankful. Best wishes to all. bleuskiiisgrl@yahoo.com


Mary C's November 15 reply to Tom S' November 14, 2006 - Hi Tom, I'm a happy sleep apnea person on CPAP for the last 4 years. It is impossible for someone with sleep apnea to receive oxygen while asleep without CPAP because the airway becomes obstructed. I should know since I stopped breathing whenever I am out, and oxygen is on me without CPAP. I set off all the alarms when I was hospitalized. Prior to CPAP use, I was waking up 59 times a minute. I only sleep one minute out of every hour throughout the night.
     Sleep apnea can cause hypoxea, high blood pressure, cause your heart to grow and a whole host of other things to go bad, let alone cause daytime sleepiness. I am very upset the insurance company won't pay for Jon' - that's not fair! Success in sleep apnea is a good sleep medicine doctor, and several masks. The different masks all have different pressure points so switch around and enjoy yourself. My husband and I both use one. We have more energy and health because of it.
     Sometimes people with claustrophobia have the most difficult time with it. They may need a little Valium. Also, the only other painful cure is carving out your thoart. They remove your adnoids, tonsils, and layers of your tonque in a seris of surgeries - not the part of the tonque that shows, the one down your throat. It is a gruesome procedure and you just can't eat painlessly for about 3 months. mhcarrs@aol.com
 
Jon's note: There is another alternative that I am looking into - having a dentist make an "appliance" (mouthpiece) that forces your lower jaw slightly forward, which moves your tongue down during sleep, lessening airway obstruction. It's gonna cost over 500 dollars and I don't know how we'll afford it but it's the least expensive option.


Roger H's November 15 reply to Tom S' November 14, 2006 - Hi Tom, Like I said, the nasal pillows are wonderful compaired to any of the other masks I've had. I know some people that went as far as having their tonsils and adenoids removed just so they wouldn't have to do the machine! Doesn't sound fun to me. rkharmony@highstream.net


Tom S, November 15, 2006 - Hi all, Sometimes it is difficult to read some of the posts because it throws me back to my early days of coping with CHF. Posts such as mortatlity statistics - there are none that are current. Posts asking questions about EF - it is what it is and subject to change. Posts about a lot of what ifs that are never relevant. Posts about diet and dietary supplements - anyone who relies on the Internet for that kind of info needs a shrink or a dietician or both. Posts about certain meds - they are what they are and are prescribed for a reason. Be sensible about meds. Listen to your body it will tell you when something is not right.
     Posts posted by people obessed by CHF - calm down - you are only hurting yourself. Take it from one who has lived a lot longer than expected: Slow down and you will probably extend your days on this earth significantly. Posts about work - again your body is saying slow down. We have seen too many people on this forum go to an early grave after bragging how they still work a full time job. Use your head and you will save your heart. Money isn't everything.
     Early on I was everything you have read here and then some. Luckily, early on I realized that it definitely was the wrong way to go. That knowledge didn't come about overnight, and came from experience and others posting to this board - in particular Jon. Perhaps it would be wise for you to consider the advice of those of us who have been there.
     Have faith and above all practise it. With sincerest best wishes to all during this Thanksgiving holiday and Christmas season may the peace of the Lord be always with you. bigheart@muchomail.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, 2005, 2006 Jon C.

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