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

Jon 8-1     thanks to all who responded!
 
Martha W 8-1     device implants, costs and more
 
Scott B's 8-1 reply to Martha W's 7-28     diuretic experience
 
Audrey R 8-1     seek opinions on ultrafiltration
 
Jim C's 8-1 reply to Steve H's 7-23     the advice seemed sound to me
 
Tom S' 8-2 reply to Audrey R's 8-1     opinions on ultrafiltration
 
Martha W 8-2     device implants, costs and more
 
Martha W's 8-2 reply to Scott B's 8-1     thank you for a good suggestion
 
Ray E 8-3     why and how are they still alive?
 
David W's 8-3 reply to Martha W's 8-2     device implants and experience
 
Holly M 8-3     seek ideas about repeated weight gain & more
 
Joey L 8-3     do trial results on CPAP include Bi-Pap?
 
Jon's 8-3 reply to Joey L's 8-3     trial results on CPAP, Bi-Pap
 
Karen K 8-3     seek opinions on digoxin dose & more
 
Donna H's 8-3 reply to Kathy H's 7-25     diet, cholesterol, statins experience
 
Giorg 8-6     EF questions, update, seek others' ideas
 
Jon's 8-6 reply to Giorg's 8-6     EF versus cardiac output, pressures, transplant
 
Scott B's 8-6 reply to Karen K's 8-3     digoxin and mortality
 
Mike H 8-6     seek right-heart cath and transplant experiences
 
Scott B's 8-6 reply to Holly M's 8-3     diuretics and weight
 
Jon's 8-6 reply to Holly M's 8-3     diuretics and weight
 
Ann D's 8-6 reply to Larry T's 7-23     generic Zocor and insurance companies
 
Ann D 8-6     seek sunburn prevention info
 
Walter T 8-7     seek calcium channel blocker vs beta-blocker experiences
 
Giorg's 8-7 reply to Jon's 8-6     question about blood pressure during exercise
 
Martha W's 8-7 reply to Ann D's 8-6     sunburn prevention
 
Sunny M 8-9     seek CHF doc in Oregon
 
Tom S 8-10     diuretic experience
 
Angela P 8-10     can a heart valve be re-repaired?
 
Steve D 8-10     seek transplant suggestions
 
Jack S' 8-11 reply to Tom S' 8-10     diuretic and body weight swings
 
Holly 8-11     seek right heart cath pressures info
 
Martha S 8-12     seek potassium versus Lasix info
 
Annette Y's 8-12 reply to Sunny's 8-9     CHF doc in Salem, Oregon
 
David W 8-12     update after pacemaker adjustment
 
Jon 8-12     large set of healthcare links updated
 
Lowell P 8-13     kidney function, dehydration, and diuretic use
 
Kisha B 8-13     how can I make husband's transition easier?
 
Bill H's 8-13 reply to Martha S' 8-12     I take potassium to offset loss from Lasix
 
Jon R 8-13     how low is too low for blood pressure?
 
Jon 8-14     don't forget to use the mailing list
 
Janet S 8-14     seek lichen planus experiences
 
Jon's 8-14 reply to Janet S' 8-14     unfortunately, I have it too
 
Bill O's 8-15 reply to Sonny's 8-9     I don't know of any CHF docs in Eugene
 
Linda K's 8-15 reply to Kisha B's 8-13     adapting to low sodium cooking experience
 


Jon, August 1, 2006 - Hi everyone, Thank you to everyone who responded to my request by donating. You pulled me out of a fire since last month was otherwise going to be our lowest-donations month ever. To those who aren't on it yet, you might want to sign on to our mailing list at chfpatients.com/lists.htm. That information is also available at http://info.chfpatients.com/ but it's not as easy that way as being on the list and getting the articles via e-mail. Thanks again and of course, a special thanks to all who donate regularly - it's appreciated more than you can know.
     Sorry about no posts yesterday but I was on a roll adding stuff to Kitchen Corner, trying to get a useful amount of basic cooking information added, like how to roast garlic, prepare celery or avocados, peel and seed tomatoes, roast chickens, use a salad spinner, and so on. Jon.


Martha W, August 1, 2006 - Hi Jon and Sandy, I've printed out your replies about the furosemide question. I'll see a cardiologist again today - they're trying to persuade me to turn in my pacemaker and get an ICD/pacemaker. I don't know who quoted the rates a few days ago, but that's exactly what is keeping me from going back in.
     I was in the hospital twice in 2002 and have managed to pay the billing offices of the laboratory, anesthesiologist, cardiologist who performed the surgery, but not the hospital. The second time I was in, I had the pacemaker and while it was only a 1/2 day stay, the bill came to something over $80,000. Blue Cross/Blue Shield paid 80% but that still left a huge sum. To date, I'm working down the bill(s) to both hospitals but I haven't made much of a dent, having to pay off two of them. Now they want to add a third bill? I don't think I can afford such good care unless he's willing to exchange it in the hospital parking lot <g>!
      The rub is that I work at A&M University, where we're offered Scott & White plan insurance. Had I gone for it, my bill would have been something like $12.50 but last week was the sign-on period end for fiscal 2007. I can't change insurance until August of 2007 in other words, and I'd lose my current doctors. That part isn't so bad since I'm not totally satisfied with them anyhow. However, I'll need to check to see if S & W doctors will even take on a patient from some other doctor's care.
     So my plan for today is to discuss all this with the cardiologist to see if he thinks it's safe for me to stall for 13 or 14 months before getting the ICD. He's going to say no, but the bottom line decision is only mine to make. Also, I usually want a blood test for diabetes and liver function so of course they didn't include that on the blood panel they asked for on Thursday. I'll get another prescription tomorrow for those, but it's irritating that I have to go again. Hopefully, they'll have my EF numbers from the echo by tomorrow. Martha. mwells@ppfs4.tamu.edu


Scott B's August 1 reply to Martha W's July 28, 2006 - Hi Martha, I think the "water pill" (Lasix) is one of the greatest daily burdens CHFers face. It's important to understand why we are taking the diuretic in the first place. The idea is to keep our body slightly on the dry side to help with the fluid retention of CHF.
     If you weigh yourself (naked) on a daily basis at the same time each day, you should be able to determine if you are gaining weight (there are other reasons aside from fluid retention for gaining weight, so you will have to consider that as well). Using the same scale and a good quality scale (digital) is a worthwhile investment. If you are retaining water (normally evidenced by weight gain), you can take diuretic. I prefer taking more diuretic less frequently, every 2 or 3 days as needed. I find this approach works well for my life style (young family and a full-time job).
     I like the idea of giving my kidneys and liver a break. I'm not sure if this really makes any kind of a difference (but it sounds good in theory). Is your reaction to duiretic consistant? For example, can you predict within 30 minutes when the duiretic effect will start? Let's say it takes 60 minutes for the diuretic effect to start, you could take your pill just before your one-hour drive and you would not need to start using the washroom until you made it home. Lasix should not last much more than 6 hours if you take it on an empty stomach. As Jon mentions, food can diminish the diuretic effect of Lasix or cause it to last longer than six hours, so taking it a fair amount of time before supper is a great idea.
     This technique works for me (on a busy schedule). On the weekend, I basically pick morning or afternoon and decide I am just staying put for one of those days. When I am on the road and have long days, I have also set my alarm clock 1-1/2 hours earlier than I want to get up to take my diuretic and I then wake up by the diuretic effect, and you can't exactly hit snooze for that kind of alarm <g>. I hope there is some information which can help some of you. Scott B. scott.brown@sunlife.com


Audrey R, August 1, 2006 - Hi, Has anyone heard about the new device for filtering water and sodium from patients with heart failure? What do you all think? audrealayna@yahoo.com


Jim C's August 1 reply to Steve H's July 23, 2006 - Hi Steve, I was surprised to see that I helped create such a fuss. My own post contained an error: it stated that I was on a dose of 6.25mg instead of stating that I started on a dose of 6.25mg. I take responsibility for not being clear and for creating a difficulty that may have helped Jon misread my dosage. But, as he says himself, it happens.
     To make myself clear, I know and understand that Jon is not a doctor. However, I learned about Jon's site in a book that was written by a doctor, Dr. Silver. Jon's opinion holds some weight with me. Also, as I read Jon's advice, he told me that he thought it was worth a shot for me to comply with my doctor's instructions to increase the dosage of Coreg. Jon did not give me advice to administer a specific dosage himself. Personally, I feel well served by Jon's advice.
     The information he shared about target dosages is verifiable, and I would advise anyone to rely on Jon's site to inform themselves before speaking to his or her doctor, but I do not think this site is a substitute for speaking to a doctor. My experience with doctors is that they do not answer questions I do not ask. This site helps me to be a good patient, and it gives me a way to participate in my treatment in an intelligent way.
     Steve, if you do not mind my saying so, your remarks seem personal. They did not help me. But, you have the right to an opinion, and I respect Jon for giving you a platform. electricmousetrap@hotmail.com


Tom S' August 2 reply to Audrey R's August 1, 2006 - Hi Audrey, This looks like another form of dialysis to me and a whole lot more cumbersome, painful and invasive than Lasix. bigheart@muchomail.com


Martha W, August 2, 2006 - Hi everyone, The implant surgeon spoke with me yesterday. My EF went from 20% to 25 to 30% but he didn't think it was much improved. They still want to go with the ICD/pacemaker because of a government test done 1-1/2 years ago. This test was between ICD patients and those on meds only and 4% of the non-ICD people died due to LV fibrillation. I asked him if they had separated out pacemaker implant individuals from medication only and he said no. However, because this involves Medicare, now the government seems to think that anyone under 30% EF for 3 months without improving is eligible for the upgrade. At the time of my implant (2002) they had to test the heart to determine if it would withstand work without an ICD, and if so, Blue Cross was likely to balk at payment so they put in far fewer than were really needed.
     Now more interesting news: I told him that if I go with Scott & White insurance, my out-of-pocket costs are $12.50 and gas money to Temple Medical Center but Blue Cross' 20% (my contribution) of an $80,000 procedure makes it worthwhile to drive to Temple. He said if I'd give him a slip of paper saying it was going to be difficult to pay him, he'd waive payment. Even better, the hospital, if I go in beforehand to tell them that I'm thinking of going to another hospital, that the 80% insurance portion is all they're going to get, they'll usually take that over getting the nothing if I go elsewhere.
     He asked me who put in my implant (he did). They first said it was a 2-lead implant and they would have to insert another lead for the ICD, which is a 3-lead ICD/pacemaker but if he didn't know he did the surgery, how would he know that? So, that's a little worrisome.
     After that uplifting news, I went to the lab at the hospital and had blood drawn for glucose and liver function testing, after having fasted since early evening yesterday. They left glucose off, so it meant another trek back to the doctor's office to have him rewrite the test order. By the time I got to work, I was exhausted! Martha.
     Oh, thanks to the response about furosemide. I'll just have to try to work it into my schedule daily and not just when I think I need it. I don't have much edema that shows anyhow. mwells@ppfs4.tamu.edu


Martha W's August 2 reply to Scott B's August 1, 2006 - Hey Scott, Now why didn't I think of that? I usually wake up at least an hour before time to get up anyhow. I make a breakfast of soaked beet pulp for my stallion and it takes about an hour to fully soak. I feed him at 5:15 AM every day and don't leave for work until 5:45 AM, so there is some leeway between the time I'm up for him and the start of my actual day. Thanks for the suggestion - a very workable solution that was right in front of me! Martha. mwells@ppfs4.tamu.edu


Ray E, August 3, 2006 - Hello, My mother-in-law had a heart attack May 2, 2006. The doctor said she had a mild attack and that the next attack would be fatal. He was sure of this and said the next attack could be within a month but no longer away than a year. She is 81 and has several blockages, but is too old for surgery. She has a history of high blood pressure and very high cholesterol. Right now she has severe edema in both her ankles and she eats all and everything, as she has always done. She has recently (after the heart attack) gained several pounds and is now two dress sizes larger than before (currently a size 20). She had a stroke 4 years ago but survived that also. Why does this woman keep living?
     My father-in-law, age 87, suffers from CHF and severe kidney failure. He has one kidney left operating at 17%. He still does not need dialysis as he gets a weekly shot. He has had cancer 4 times and still survives. He has severe arthritis in both feet, can barely walk and refuses a wheelchair (he says he is too young for that). He recently survived 4 hours of surgery to have his throat widened. He has high cholestorol, high blood pressure, and still lives. Why does he keep surviving? accu-sign@earthlink.net


David W's August 3 reply to Martha W's August 2, 2006 - Hi, I just got back from my cardiologist. He adjusted my pacemaker and upped the setting from 60 beats to 75 beats per mintue. Maybe that will help. I have a little color now. I have been very pale and weak. He said it was just set too low. If I don't get better in the next week he will try something else, like adjusting my Coreg dose. I do feel a little better right now but I guess time will tell.
     Martha, be careful about the pacemaker. If your heart was as weak as mine was, the leads may not stay in place or you may not have any problems at all. My cardiologist said since I have had heart failure for years, the bad part of my heart is just very thin and weak, and could not tolerate the lead very well. The defibrillator is turned off but the pacemaker is okay and still working. I read up on poking a hole in your heart and it is very rare but not unheard of. The percentage is way under 1% of this happening to someone, but I am so lucky.
     I don't want to discourage you though, as the pacemaker helped a lot at first for me. I think the docs are pushing it because Medicare will cover the surgery now and they can make money on it and it may help lots of people; who knows? My cardiologist recommended it because he thought it would help and he has not offered much in the way of help before, as there was not much he could do to help me because my symptoms are pretty much under control for now. wilsond537@aol.com


Holly M, August 3, 2006 - Hi, It's been awhile since I last posted. I have a few issues I'd like to know if anyone knows about ot has had happen themselves. I am in class 3 CHF and taken a lot of meds. I will be doing fine and then overnight put on 4 to 6 lbs. Once that happens, the oral diuretics don't work anymore and I end up in the hospital for IV diuretics. I don't do anything differently. My fluid intake is 1800cc, my sodium is always under 1500mg daily. I just don't understand what makes this happen. My docs are all scratching their heads too!
     Also, I've noticed lately that I have become much more tired than in the past. On the bright side, I am going to the University of Pittsburgh to be evaluated for the stem cell research study they are starting there. I fit all the criteria. This is a study in which they harvest your own stem cells and reinject into the damaged heart muscle. Since I will have to have a heart transplant at some point I thought this would be worth looking into. Thanks for listening. holly92756@zoominternet.net


Joey L, August 3, 2006 - Hi Jon, You just sent a mailing about CPAP usage and increase in exercise capacity. Does that also apply to people who use bi-pap? ramblingrosarian@yahoo.com


Jon's August 3 reply to Joey L's August 3, 2006 - Hi Joey, Common sense tells me that the benefit should also exist for Bi-Pap users. However, common sense doesn't always pan out in heart failure treatment so I have to say that I just don't know. The trial patients were not using CPAP for sleep apnea at night. They were using it for 30 minutes once a day to improve ability to breathe. Jon.


Karen K, August 3, 2006 - Hello everyone, I am just looking for opinions and comments on this. I saw my CHF doctor Tuesday. My last echo showed my EF at 40%. I've been diagnosed with IDCM since 1991. I have had only one incident of excess fluid retention in the years since diagnosis, and that came on quite rapidly; my lungs filled with fluid in several hours.
     I've been having problems with potassium (slightly elevated) so I also must watch my intake of potassium-containing foods. I am fairly good about my salt intake but also am very well compensated. Thanks be to God! Over the past year I've had a very slight decline in kidney function. Six months ago my test results came back just over what they would like to see and the results have been worse previously.
     At my appointment, my doctor told me he wanted me to take my digoxin (Lanoxin) only 3 days a week instead of the usual daily. My thoughts on this are that Lanoxin is excreted through the kidneys and with elevated kidney levels, they would like to see less stress on my kidneys. This makes sense and I'm ok with that.
     My issue is that Lanoxin increases the function of the heart. Will a decrease in my Lanoxin be harmful to my heart function? I also take Aldactone (spironolactone) at half the normal dosage (12.5 mg on Tuesday, Thursday, Saturday and Sunday with 40 mg of Lasix on Monday, Wednesday, Friday, and Sunday. My doctor says the spironalactone isn't actually doing all that much as a diuretic but it is recommended for CHF patients.
     As I mentioned before, I'm very well compensated. My belief is that God just needs me here on earth for something special and whatever that is, it hasn't yet happened. I hope it doesn't happen for quite some time or if it does, that it's long term. I'd appreciate your thoughts on this. Karen K. karenk@machlink.com


Donna H's August 3 reply to Kathy H's July 25, 2006 - Hi Kathy, My husband didn't want to take statins because he is awaiting transplant and liver damage could keep him from getting a new heart. His doctor (nurse practioner actually) decided to have him try Niacin and to try to control it through weight loss. As far as diet, he eats 4 eggs each morning and uses only cream, real butter and Half-and-half. He did cut out wheat products, sugar and potatos. He uses only olive oil and no salt when he cooks. In the two years since he changed his diet and started taking Niacin, he has lost 95 pounds and and his cholesterol has gone from 250 to 150.
     I would never say that his diet would work for anyone else and am not recommending it. Also, some people have trouble with Niacin causing flushing. Luckily, what he has done has worked for him. Right now his good cholesterol is a little low so he is trying to add fish and unsalted nuts to his diet. I hope it helps! chuckndonnah@msn.com


Giorg, August 6, 2006 - Hi all, I just came out of the hospital where I stayed for 8 days for changing my low-battery ICD and doing some exams. I had a long right heart cath with pharmacological tests and was evaluated for heart transplant, except for Vo2max, scheduled for September. I repeat those exams like every two years because the members of my family with DCM all needed a transplant after some years. My echo seemed not to bad with an EF of 30% (that's my usual number), but heart cath showed that hemodynamically, my heart is not doing as well as it was doing two years ago. It pumps like 3.2 litres per second instead of 5, pulmonary pressures are high, wedge pressure is high, and I do not know what else.
     I do not understand how with a stuck EF, heart pumping can be so worse but so it is. My cardiologist with pharmacological tests decided that if I can go up with an ACE inhibitor, I can do better so he raised my ACE inhibitor (actually the ARB Losartan). The problem is that my pressure is low lately, around 90/50, when I am lucky. With the new dose of ARB it is around 80/40. Can I go on like this?
     They cannot reduce my beta-blocker (sotalol) that is also a necessary anti-arrhythmic for me. I am scared of reducing diuretics (50 mg of furosemide per day) because I am coming off a long period of fluid retention (4 to 5 pounds more that made me weaker. What can I do for my blood pressure?
     Jon, do you think that totally cutting off arginine (2 g per day) and taurine (one g per day) can help? I read those supplements are vasodilators, so it can be worth a try, but I do not want to lose the positive effects that I think they have on my symptoms. Any suggestions? Any experience of someone recovering from a worsening hemodynamic condition? The situation is tricky also because the weather here where I live (north of Italy) is hot and humid in this season, and I am forced to stay at home all day long with air conditioning. Thank you. giorgclunei@hotmail.com


Jon's August 6 reply to Giorg's August 6, 2006 - Hi Giorg, I am sorry you are struggling right now. First, take a look at the following study in Medline: "Elimination of cardiac arrhythmias using oral taurine with l-arginine with case histories: Hypothesis for nitric oxide stabilization of the sinus node". It's from Med Hypotheses. 2006 Jun 22; [Epub ahead of print]. The authors were Eby, G and Halcomb, WW. PMID 16797868. Although the doses are high, it may be a good reason to stay on the supplements for you specifically with your unusual situation. I doubt that you are taking enough to cause over-vasodilation since these amino acids are precursors to nitric oxide but not direct producers of it, and your HF inhibits NO production.
     About EF, remember that if your heart has less blood in it when it is full, then it will pump less blood (lower cardiac output) with the same EF. You apparently have a filling problem (diastolic failure as well as systolic failure), indicating increasing right-heart failure, which is in line with rising pulmonary artery pressure and rising PCWP.
     You may be heading for true pulmonary hypertension. Have a serious talk with your cardiologist about this since too-high pulmonary pressures can take you off the transplant list. If your pulmonary and right heart pressures are on the rise, you may need a heart transplant sooner rather than later so your pressures don't "blow out" a new (donor) heart when it is implanted.
     If potassium levels are not a problem, also discuss Inspra with your cardiologist. It might buy you some more time. I wish I could be more upbeat but you need to be aware that high pulmonary pressures could prevent you from getting a transplant later, so talk to your doctor now. Jon.


Scott B's August 6 reply to Karen K's August 3, 2006 - Hi Karen, After all this time researchers know Lanoxin makes you feel better but the jury is out about the benefits above symptoms. It is a fact that Lanoxin is not going to help you live longer. If your CHF doc thinks it is a good idea to cut back Lanoxin just over 50%, I personally wouldn't have any concerns. It's not like you can't start taking more if you start to feel horrible. It would be great if this gives your organs a break. Scott B. Scott.Brown@sunlife.com
 
Jon's note: A very recent mailing that shows new results on the digoxin-for-mortality question can be seen at http://info.chfpatients.com/Digoxin_should_not_be_forgotten.txt. The mortality benefit is small and much depends on dig blood level but it's information to consider. Please note though, that I quit digoxin years ago due to side effects and don't worry about not taking it.


Mike H, August 6, 2006 - Hello, My symptoms and quality of life have gradually gotten worse over the past year after doing well for the first 4 years of having CHF. Next week I go in for right heart cath and yesterday I received a call about a social worker wanting to speak about the heart transplant process on the same day. I am not sure what to expect for either of these things, let alone if this is the most ideal time for me to be discussing a heart transplant since I will have just had surgery.
     I do live out of the area so timing is limited. I would just like to have an idea of what to expect. Thanks in advance. skinsfanmh@yahoo.com


Scott B's August 6 reply to Holly M's August 3, 2006 - Hi Holly, To my way of thinking, there are some assumptions being made about your weight which may not be accurate. When you drink a glass of water, your body should gain the equivalent weight of a glass of water. When your body releases the water (urination, sweating, etc), your weight should decrease. It should not be possible to actually gain new weight overnight. It's obvious you are retaining fluid and that gets you into trouble. Retaining fluid makes it harder for your heart to function properly and it will make you feel tired. Here are some ideas:
     Weigh yourself more than normal (twice or three times a day) with a digital scale. Watch for weight fluctuation. If you are not urinating at a normal frequency, this could be a clue you are retaining fluid.
     If you are retaining fluid, you need to take duiretic to get back to your baseline (normal level). If this does not work, you may need a larger dose (or you could increase the frequency of the dose). If your diuretic is not working, this is another issue to explore.
     One cup of water is equal to approximately 1/2 lb. In order to retain 6 pounds, I think you would have to retain a minimum of 3000 ml of fluid. Since you are only drinking 1800cc (ml) of water, a signifanct retention should be noticable the previous day. This estimate is conservative, since it would not be possible to retain 100% of the fluid (unless your tear ducts, sweat glands, etc.) were removed.
     Don't get hung up on my estimations. I hope the underlying message is helpful. Thanks, Scott B. Scott.Brown@sunlife.com


Jon's August 6 reply to Holly M's August 3, 2006 - Hi Holly, I hate to pop in here but please don't weigh yourself multiple times a day. Scott is correct that common sense tells us this will work, but it won't, trust me. Doing so wrecks the effectiveness of the weight-gain/diuretic-dose plan. Trust me, weight can yo-yo during the day for so many reasons I don't go into them onsite. It's not as direct as drink one lb of water, gain one pound of body weight. The number of ways the body loses fluid and what affects them could fill a book. The places fluid can accumulate in the body, how fast it can happen and how many things affect that is another book's worth.
     Weigh yourself nude as soon as you get out of bed every day, before going to the bathroom, before eating, before drinking anything, and write it down!. Use this and make a copy for your doctor when you have an appointment scheduled.
     It seems you have a problem absorbing oral diuretics, which means you should absolutely take torsemide. I don't know if that's what you take now or not but if not, the official treatment guidelines say you should. I am assuming your kidney function has been tested with a 24 hour urine collection test for creatinine clearance. You should also be checked for lymph edema and liver congestion, which could be part of the problem.
     I have gained up to 6 pounds in 24 hours myself and have lost as much as 8 lbs in 24 hours at home. It's a very individual thing. I use a high-end weight scale.
     There is a lot of info on diuretics here that isn't often read, some a little technical. Please see http://info.chfpatients.com/ and read all the articles beginning with the word "Diuretic". You'll learn a lot, really. Jon.


Ann D's August 6 reply to Larry T's July 23, 2006 - Hi All, this is the first I've posted on this site, even though I've been lurking for awhile. I just had to reply to Larry T's note about the generic for Zocor. Please, please check with your insurance company first before switching to the generic form. I went with the generic this last time and ended up paying $40 as compared to the brand name version, for which I paid a $10 copay. When I called the insurance company, they had no explanation as to why a generic would cost more than a brand name, but I learned a $30 lesson. Check first! adicocco@bellsouth.net


Ann D, August 6, 2006 - Hi All, I am leaving on vacation (yeah!) to Sanibel Island later this week. I am very pale since I haven't really gone out in the sun in a long time. I am however, a long time resident of southern Florida and well know the danger of long sun exposure. However, I have been told that my medications may cause me to be more photosensitive than normal. I take the usual Altace, Coreg, diogxin, Lasix, Zocor, and Inspra. Because of my emphysema and asthma, I also take albuterol for emergency inhaler and for treatment machine, along with Singulair. Because I have major depressive disorder and severe arthritis, I take Wellbutrin, Xanax, and to control pain, Vicodin. I bought sunscreen with a SPF of 45, but now am wondering if this is high enough. I'm looking forward to lazing by the motel pool, seashelling, and don't want my vacation ruined by a bad sunburn. Your opinions will matter to me. Thanks. adicocco@bellsouth.net


Walter T, August 7, 2006 - Hi, I have class 3 CHF. I am on Monopril at 20mg, Lasix at 80mg, diltiazem at 360mg, Atacand at 16mg and take supplements - CoQ10, carnitine. taurine, hawthorn, etc. My breathlessness and bad days are steadily increasing. High blood pressure (150/90) is returning whilst it has been under control for about 4 months (130/80). I have cut down on business committments 50% and would ask people's experience with a beta-blocker instead of a calcium channel blocker such as diltiazem. Also, does stopping work completely help CHF problems getting worse or not. I would appreciate feedback. walter@tbssoftware.com.au


Giorg's August 7 reply to Jon's August 6, 2006 - Thank you Jon a lot, I remember that also my uncle (who got a heart transplant and is a doctor) told me about the risk of high pulmonary pressures in heart transplant. Now they are like 50 to 30 mmHg, not a good number, but not already tragic I think. My CHF specialist is well aware of them, actually they made him probably worry more than my heart's pumping (that went up with pharmacological tests). I already take Aldactone at 25 mg a day. And you are right about supplements in the dosage I take them, they can not influence blood pressure.
     Just another question for you and others - I lately noticed that mildly exercising on my stationary bike, at some point (even if I am not out of breath) my blood pressure slightly goes down to the point it was at the beginning of the exercise, while my beats per minute are about 130 (I used to go up with the actual therapy to 135 to 140 beats per minute). This is new for me.
     I guess it has something to do with the worsening of the situation. My question is: Do you guys think it is okay going on in the exercise with that litte drop in pressure or I should stop at once, to avoid the risk of fainting? Arrhythmias should not be a concern, because I have an ICD and spoiling my heart is not a concern because it looks like the evolution is "genetically written" and I have clear arteries. Thank you. giorgclunei@hotmail.com


Martha W's August 7 reply to Ann D's August 6, 2006 - Hi Ann, You may already know this, but I recently saw on TV a little gizmo that you wear like a bracelet. When you dab on your sunscreen, you lather this wristband up, too. It gradually loses color so that when it turns gray, you know it's time to reapply sunscreen. I'd think this would be a very safe way to know how much to put on.
     Also, since you're in Florida, you may already have gauzy shirts and pants to put on while in the sun. I've been known for mowing my pastures, riding my tractor while wearing pjs! I can't wear sunscreen because the weed seeds, chaff and dust stick to my skin, so long sleeves and pants are my only solution. Martha. mwells@ppfs4.tamu.edu


Sunny M, August 9, 2006 - Hello, I am new to this site and this group. We are moving to the Salem, Oregon area and wonder if anyone has a good doc at either Pacific Heart Association in Portland or at Oregon Heart Failure Center in Eugene? Thanks, Sunny. 2sterlingsilvers@charter.net


Tom S' August 10, 2006 - Hi everyone, I've been on diuretic pills for nearly 12 years and no two days are ever the same as far as output. There are times they seem to open the floodgates and other times it's barely a trickle even though I have not changed my dosage of Lasix (furosemide) which averages a massive 320 mg daily. I have yet to panic over the yo-yo effect and there are times I know it is my fault for eating too close to taking the diuretic at morning or afternoon dose.
     Sometimes I just stop taking my furosemide for a day or two, then start back to taking it. That seems to help but I do notice a definite abdominal bloat when I lay off the furosemide. Most if not all of my water retention is abdominal so I can tell pretty quickly when I am retaining excess fluids.
     The biggest assist thus far in losing over 40 pounds of fluid has been my BiV pacer/ICD. I have lost that much weight and continue a downward spiral at the rate of about a pound a week since it was implanted on April 28, 2006. As in all things medical, nothing is an absolute for all people and you have to work with your physician and use common sense when using prescription drugs, and for heavens sakes, don't panic!
     I hope this helps some for those who are "confused" about diuretics. bigheart@muchomail.com


Angela P, August 10, 2006 - Hi, Three years ago I had two heart valves repaired. At the time I was in severe heart failure and not expected to live. I have been doing well for 3 years. When I went to a recent doctor visit (after having an echo done), he said my valve is leaking again and needs to be watched closely. Has anyone else had any problems like this?
     I really thought I was "healed." I am still on all my meds (basically the same things most of you are taking). I am wondering if they can go back and re-repair a leaky valve? I had previously heard "no," but I am not so sure. Any help would give me some relief from my worry. Thanks! award2003@yahoo.com


Steve D, August 10, 2006 - Hi all, I had a heart transplant in November of 1997 and it's now 2006. I live in England. What I have found difficult is, finding easily understood survival statistics for people who have had heart transplants, even on the web. I am still okay, but have recently been tried on some different immunosuppressants which have made me very ill, so they have changed me back to the old ones. The problem is they're damaging my kidneys! Any advice on anything I've said? Thanks, Steve. steveg9@fsmail.net


Jack S' August 11 reply to Tom S' August 10, 2006 - Hi Tom, I take 80 mg furosemide daily and have similar results to yours. It seems to occur when I consume too much sweets or starches. I have gone from 180 to 184 the next day and then swing back to 176 the following morning. Invariably, I come back to the 180 within a day or so of a weight change. jspringston@carolina.rr.com


Holly M, August 11, 2006 - Hello, I just got home from the Cleveland Clinic where I had a left and right cath done. My left heart cath looked good, with no blocks in any of the arteries or stents needed. The right-heart cath not so good, pressures were extremely high (they didn't give me numbers) and I'm not sure what this means. The only change they made was upping my diuretics to 80mg Demadex from 30mg. My symptoms have been excessive fatigue and sleeping 16 to 18 hours a day. I have a really dry cough that makes it hard to breathe at times. There is swelling in my stomach and just slightly in my ankles. Does anyone know anything about right heart caths and pressures? I'm having a hard time finding info. Thanks, Holly. hooly92756@zoominternet.net
 
Jon's note: See chfpatients.com/ph.htm#glossary.


Martha S, August 12, 2006 - Hello all, My mom has had CHF for over three years now. She has had two very bad episodes which brought her to the hospital, once to ICU to remove fluid. She is totally bedridden and incontinent. Just this week, she began bleeding from her colon, was admitted to the hospital (ICU) where they did a scope - upper and lower - and found some postures bleeding and also thought it might be from hemmorhoids.
     She is stable now and the bleeding seems to have subsided. However, I just talked with the ICU nurse and she mentioned that my mom is now beginning to have edema again and they mentioned low potassium and said they do not have her on Lasix while she has been in the hospital. When in the nursing home, she has Lasix every day for swelling. The reason for discontinuing the Lasix, they said was because of her low postassium level.
     I have heard the low potassium is bad on the heart, but so is the fluid. What would be the best solution to this, if any? msellwood@landam.com


Annette Y's August 12 reply to Sunny's August 9, 2006 - Hi Sunny, I sent you an e-mail with info on an excellent CHF doctor in Salem, Oregon: Cascade Cardiology, with Doctor Kirk Walker at 503-485-4787 and my contact info. Please feel free to contact us. We live in Salem. amy412001@yahoo.com


David W, August 12, 2006 - Hello, I just wanted to update everyone. My heart doc turned up my pacemaker from 60 beats a minute to 75 beats a minute, and I do feel a lot better. I was told by my heart surgeon they cannot put the lead back in my heart for CRT since my heart is just too weak and thin there, and I would have problems again.
     The CRT helped more than they thought though, because I did feel almost 100% for the first time in a long time that first month. I feel about 75% now which is not too bad. I just have to watch and not push myself too much. I encourage other people to have a pacemaker put in if they need one. I think it has helped me in the long run even with all my problems. Sometimes they have to adjust the pacemaker to help you more. wilsond537@aol.com


Jon, August 12, 2006 - Hi everyone, I have updated and made available a large set of links or "favorites" that I often use in my own research. It's a zip file and any modern software will unzip it into already-organized folders in one overall folder called "Health" then you can just doubleclick on whichever one you want, to go to that web page. See chfpatients.com/urls.htm. Jon.


Lowell P, August 13, 2006 - Hi Jon, I had a 6-week check up today and learned my BUN has increased from 35 to 62. My creatinine increased to 1.7 also. My doc says I am too dry and to drink more water but to continue taking Lasix twice a week at 40mg. This seems contradictory. Why would I continue a diuretic if I am too dry? I do tend to pick up weight if I don't take a diuretic a couple of times a week. I also realize that I don't drink much water - I just don't get thirsty. Naturally, I think of these things after I get home. I am scheduled for another BUN test in two weeks. What do you think Jon? Thanks. Lowell. Lpepper3m@aol.com
 
Jon's note: Hi Lowell, I'd follow my doc's suggestions until my next kidney function test, then if your numbers have not improved, I'd talk to him about either stopping the Lasix or possibly taking a thiazide diuretic instead.


Kisha B, August 13, 2006 - Hi, I am a 33 year old wife and mother. A few days ago my 38 year old husband had a heart attack. He had one artery 100% blocked in which he had a stent placed and another artery that's 70 to 80% blocked that may also in the coming weeks need treatment. He drove himself to the hospital, telling me he was fine to drive no less. He is coming home tomorrow and my concern is what to feed the man?!
     He's also a smoker. Well, he said his last cigarette was the day he went to the emergency room. He is used to eating all the wrong foods like ice cream before bed, bags of Cheetos, etc. He doesn't like my cooking to start with. He actually claims it's "flavorless" - ha!! Just wait. I'm afraid all I will be able to let him have is plain chicken, fish, or turkey and vegtables!
     Portion size is another issue. Please help. I am so confused. He can't have salt, and he has high cholesterol. Diabetes also runs in his family so he should limit carbs as well. I just feel bad that now he is ditching the cigarettes cold turkey (he has tried to quit many times before) and now his food is going.
     ow do I make this transition better for him when he's just thrown into a new life style with no time to cut back gradually, just drastic cuts in fat, carbs, sodium, and cigarettes? Any advice will help! Thanx so much, Kisha. moongoddess1973@aol.com
 
Jon's note: Have you checked out chfpatients.com/rec/recipes.htm and the low sodium links at chfpatients.com/links.htm#sodium?


Chris J, August 13, 2006 - Good Morning all, Jon, I just wanted to let you know that after a double visit to the hospital (July and just this past week) where my husband Ryan has now been given a total of 7 stents (had CABG x 3 done in 2000). When the cardiologist's physician assistant came in to give us the new stent card, etc,..., she also gave me a list of web sites. I read through it and said, you are missing the most important one: CHFpatients.com. I went on to explain to her that your site has guided me through these past six years giving me answers to questions and providing me with clear, concise information that we have been able to use.
     She took down the information and stated she may be contacting you (Elisa, from Dr. Pilcher's Cardiology Practice in Jacksonville/Fernandina Beach, Florida). Our story is a complicated one involving COPD, CHF, lupus, and Barrette's, to be brief. Ryan's lung capacity is now at 20%. It is difficult.
     We have an appointment with the hospice nurse for assessment tomorrow (Monday). I am not sure what that is going to mean. Ah, I see I have gotten wordy, sorry. My real purpose was to thank you again and let you know that what you and Linda do is of vital importance. Thank you. Ryan and Chris. tibia456@aol.com


Bill H's August 13 reply to Martha S' August 12, 2006 - Hi Martha, My doctor has me on potassium pills to help replace what is lost from taking Lasix. bj5250@yahoo.com


Jon R, August 13, 2006 - Hello, I was diagnosed with non-ischemic dilated cardiomyopathy on 5/29/2006 with an EF 0f 20%. I guess I should mention that I am age 35 and that my condition is believed to be alcohol related or viral. I just recently had a physical stress test done and echocardiogram, and my EF went up to 35%. I also just had blood work done and they said it was perfect. I am on vacation right now and my blood pressure readings seem to be a little lower than normal. I am currently taking Coreg at 6.25mg twice a day, Lisinopril at 5mg at bedtime, and clanazepam at 0.5mg daily. My blood pressre readings in the past few days have been when I wake up at 117/67, after Coreg at 106/57.
     I was wondering how low is too low and should I be concerned about the drop? I sometimes feel a slight pressure in my chest but no pain and usually during stress. Thanks for any help! jreimer70@yahoo.com


Jon, August 14, 2006 - Hi everybody, Don't forget to subscribe to our mailing list if you haven't done so already. There is lots of solid information in plain English to be had there. Subscribe at chfpatients.com/lists.htm. Per our privacy policy, your e-mail address when you use the mailing list stays confidential, period. Jon.


Janet S, August 14, 2006 - Hello all, I have had mouth sores for almost a year and finally got a tentative diagnosis of lichen planus. I have read that certain meds to control blood pressure may cause this. Other possible factors are stress, autoimmune dysfunction, etc. Has anyone had experience with this and if so, does anyone know which blood pressure meds might cause this? I would hesitate to stop any of them as my blood pressure has been running a little higher than normal, yet these sores are very painful. Any help on this would be appreciated. I went to at least 4 doctors before I got even a guess on what this is. Thanks, Janet S. bjatvsmith@socket.net


Jon's August 14 reply to Janet S' August 14, 2006 - Hi Janet, I have lichen planus across my upper back, both shoulders, and down both arms, slowly spreading to my chest and forehead. There should be no trouble diagnosing this because it is diagnosed by taking a biopsy and sending that to a lab to be cultured where the identification is made beyond doubt. You should be treated by a dermatologist for this. Mine is caused by my immune system attacking the middle layer of my skin, which makes it almost impossible to treat.
     Why not do a drug challenge to find if a med is causing it? You stop one med for usually 2 weeks (but this kind of thing may take 4 weeks), then see if the bumps go away. If they do, try a different drug in the same class (a different ACE inhibitor or switch to an ARB - if a beta-blocker switch to a different one). If not, go back on the drug and repeat the drug challenge for another of your meds.
     Usually the stuff goes away in between a few weeks and 2 years and doesn't usually come back but that's not written in stone. Jon.


Bill O's August 15 reply to Sonny's August 9, 2006 - Hi Sonny, I am most sorry to report that here in Eugene, Oregon we have 15 cardiologists and not one specializes in CHF. All claim to be interventionalists, which as you may know is the cadillac of cardiology whereas CHF specialists approach CHF with medical treatment plans, not the more profitable surgical options. I hate that so many cardiologists are mercenary.
     I am most thankful for this forum with Jon so that I can work with my primary doctor, with some understanding of my condition and not be forced to go to a cardiologist that works to maximize profit with invasive tests and surgeries.
     Please those of you who can afford to send a donation now and then to Jon to keep this forum up to date, please do so. Bill. tbill@efn.org


Linda K's August 15 reply to Kisha B's August 13, 2006 - Hi Kisha, I feel your pain! The new diet has been one of the hardest things for me to adjust to. I've got an extra level of difficulty because my husband and I are vegetarians (and I still have high cholesterol - go figure!). I find I have to do a lot more cooking than I used to do because to put it plainly, most low-sodium prepared foods taste like sewage. Many of them try to replace saltiness with sweeteners, which never works, and they are all just plain scared of spices.
     First thing is, change your whole household. The diet will be good for you and the kids as well, and your husband will have a very hard time sticking to it if everybody around him are enjoying the things he misses. I'd have a much harder time if my wonderful hubby wasn't dedicated to this diet with me.
     Next, unless your husband is seriously overweight, ease him into it. In the early days, I found my new way of eating downright depressing. Too much deprivation too soon can cause any diet to crash, and he's already giving up smoking, which is tough. You don't say what his daily salt limit is, but you are going to find either way that obnoxious flavors are going to become your best friends.
     Fresh also makes a big difference. Learn the joys of hot peppers, fresh garlic, spanish onion (the kind that make you cry when you cut them), lemon juice, paprika, and so on. Don't be stingy, either. Keep spicing and tasting. Salt brings out flavor, so you'll need to up the ante in other ways. Mexican is very low-sodium friendly because of the spiciness. Fresh tomatoes give more flavor than canned. My husband and I both agreed that my first batch of low-sodium chili was the best chili I had ever made, but then I had never put so much care into the fresh ingredients and spices.
     As a self-confessed "foodie," I'm starting to get a real grip on creating flavor with little or no salt and I'm enjoying it more, and I love making it up as I go along. Feel free to drop me an e-mail if you'd like any tips on anything I've found, or if you want to pass along a great recipe, with no meat, of course!
     Good luck! lindakasunick@adelphia.net


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005, 2006 Jon C.

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