The paperwork never ends The Archives
May, 2007 Archive Index

Rod C's 5-2 reply to Debra S' 4-30     stem cell therapies and more
Stacey J 5-2     congestive passive liver - anyone?
Tony M 5-2     my experience with Dr. Patel
Carol H 5-2     meds changes are helping me
Ken N 5-2     stem cell research
Ken N 5-2     books, handy device, and more
Ken N's 5-2 reply to Beth B's 4-30     it's scary but don't give up
Ken N 5-2     seek others' similar experiences
Jimmie R 5-2     questions on test taking and meds
Kooky F 5-2     are such severe symptoms usual with heart failure?
Kooky F's 5-2 reply to Fred W's 4-18     our histories are similar
Mary C 5-2     do changing seasons and weather bother you?
Jon 5-7     the joys of illness - not
Laurie N's 5-7 reply to Mary C's 5-2     changing seasons and weather bothering you
Carol H's 5-7 reply to Mary C's 5-2     changing seasons and weather bothering you
David E's 5-7 reply to Mary C's 5-2     changing seasons and weather bothering you
Terry H's 5-7 reply to Ken N's 5-2     what worked for me
Roger H's 5-7 reply to Ken N's 5-2     another book worth reading
Ann L's 5-7 reply to Carol H's 5-2     ARBs, blood pressure and more
Debra S 5-7     ice cold hands & feet, Coreg CR question
Michael K 5-7     seek CHF doc in Buffalo, New York area
Patrick M 5-7     questions - Coreg CR, stem cell therapy studies
Bessie H 5-7     what should I do about fluid retention?
Abe F 5-7     seek experiences with open-heart surgery healing
Cary D 5-7     could these supplements hurt my kidney function?
Janice S 5-7     intro, my daughter's situation
Barb N's 5-8 reply to Jon's 5-7     CPAP, sleep and provigil
Jon's 5-8 reply to Barb N's 5-8     CPAP, sleep and provigil
Janice S' 5-8 reply to Jon's 5-7     nitro, blood pressure, and more
Roger H's 5-8 reply to Abe F's 5-7     experiences with open-heart surgery healing
Mary C's 5-8 reply to David E's 5-7     check out megaheart dot com
Jon 5-12     it's always something
Mary C 5-12     problems with weather are real
Peter S 5-12     central versus obstructive sleep apnea
Joy K's 5-12 reply to Debra A's 5-7     icy numbness with Coreg
William J's 5-12 reply to Kooky F's 5-2     fluid retention and breathing
George C's 5-12 reply to Bessie H's 5-7     increasing furosemide's effectiveness
Roger N's 5-12 reply to Janice S' 5-8     Ranexa works for me
Jon 5-15     how it is going
Danny B 5-15     desperately seeking hope and suggestions
Janice S' 5-15 reply to Roger N's 5-12     thank you for the suggestion
Debra S' 5-15 reply to Jon's 5-12     thanks for the suggestion & more
Joy K's 5-15 reply to Jon's 5-12     asthma, testing, meds
Terry H 5-15     how do your sleep test go, Jon?
Debra S' 5-15 reply to Joy K's 5-12     thanks for the reply
Mary C's 5-15 reply to Cheryl S' 4-19     stress is stress, hang in there
Mary C's 5-15 reply to George C's 5-12     edema in different places, different meds
Sue H 5-15     seek lipitor suggestions
Jimmie 5-15     Coreg CR offer from manufacturer
Tom C 5-18     how many feel better with BiV pacing?
Mary C 5-18     what about asthma meds and HF?
Gene B 5-18     have lots of experience with implanted devices
Scott B's 5-18 reply to George C's 5-12     diuretic experience
Mary C 5-18     any ideas on this?
Jon 5-21     weird stuff always seems to happen to me
Roger H's 5-21 reply to Jon's 5-18     nasal pillows are great for CPAP
Gene B's 5-21 reply to Tom C's 5-18     BiV pacemaker/LVAD experience
Mark M's 5-21 reply to Tom C's 5-18     BiV pacemakers
Gene B's 5-21 reply to Janice S' 5-7     Heartmate 2 LVAD possibility
Theresa B 5-22     seek help with meds, including diabetes meds
Jon 5-2s     delays, delays, delays
Ken N's 5-22 reply to Dannie B's 5-15     I don't understand your dad's current treatment
Scott B's 5-23 reply to Dannie B's 5-15     heart transplant and more

Rod C's May 2 reply to Debra S' April 30, 2007 - Hi, Jon is right they are two different philosophies. The third is embryonic stem cell therapy but everyone is shying away due to the moral questions. As I understand it though, Dr. Patel is only conducting clinical trials at this time in Pennsylvania. As far as I know, all US and Canada facilities are doing only trails since nothing is FDA approved.
     Jon, when you say FDA certified, does that mean they are approving the adult stem cell procedure? Or just approving trails at this time? I am seeing a doctor tomorrow to talk about ICDs. I have plenty questions, but still like the idea of fixing my heart.
Jon's note: It means that the trial is directly aimed at getting the treatment FDA-approved, so it is "in the pipeline." The Theravitae therapy is not directly trying for FDA (and thus American) approval.

Stacy J, May 2, 2007 - Hi, Has anyone heard of congestive passive liver? Apparently, my dad (who is now in week 2 in the ICU) has this now, too.

Tony M, May 2, 2007 - Hi all, I would like to add that it was Dr. Patel who found out I had S/A during testing for bone marrow stem cell therapy. I spent a week at UPMC, the hospital in Pittsburgh where he does his testing. I was tested by first class people with first class testing procedures. He told me immediately I had more than heart failure going on and he would find out what my other problem was before I left. He did as promised and I owe him and his assistant Sherill many thanks for going beyond testing me for the stem cell study - S/A was speeding up the heart failure and had started lung failure. I was very fortunate to see him and his staff. Tony M.

Carol H, May 2, 2007 - Hi everyone, I just thought I'd post about my change in meds. I had a terrible cough with lisinopril so my doctor changed me to an ARB, Cozaar. So far I've had no trouble with it. Does anyone have a reason that lisinopril would be better even though the cough drives me nuts? I want to take the best even though a side effect is uncomfortable (within reason).
     I also had trouble with Coreg. It made me feel worse plus I had terrible hot flashes so he changed me to Coreg CR. It has worked great and my hot flashes have stopped. It must have been due to the gradual release of the drug versus regular Coreg. Anyway, thought I'd let you know how well it has worked so far. I still may have to have a CRT pacer implanted and will know in a couple of months. Carol H.

Ken N, May 2, 2007 - Hi, I'm also very interested in stem cell procedures. Yes, there are different sources of stem cells. Current testing is revealing more questions than answers and the tested groups are extremely small. We all know that there is opposition to embryonic stem cell research.
     I, and I think all of us, have high hopes for a stem cell miracle procedure; to have our health restored. It would certainly be a blessing. You mentioned a Dr Patel doing a (promising?) stem cell procedure on singer Don Ho. Keep in mind that Don Ho died this month of CHF. Get political. Learn the real truth of stem cell research and try to educate those who oppose it.
Jon's note: I confess that your post confuses me. Who opposes adult stem cell research? It is the patients' own cells that are used in both of the mentioned procedures.

Ken N, May 2, 2007 - Hi all, For sources, this site is the best, but add some books. Cleveland Clinic Heart Book, Mayo Clinic Heart Book, Yale University Heart Book and Success With Heart Failure are good. I got all of them used via for under $30. They may not keep me from dying of CHF, but at least I'll die educated. I do recommend them.
     I also bought a great little wirst watch in sporting goods at the local Target store for $50. It tells me me current heart rate. There is no strap around you, just the wrist watch. Push a button and it displays your pulse. My pulse is now 85. In February I felt it coming on and the watch said 165 and my ICD fired 7 times (when I hit 175) while I laid on the kitchen floor awaiting the medics but the ICD couldn't stop it. That is called an electrical storm for those who don't know.
     However, in December I was painting a room (fumes) and was tired and felt it coming on. I got on a bed, got a fan on me and a wet cloth, gulped down an extra beta-blocker and waited for the medics. My pulse got to 165 but did not peak on me. I did go into the hospital overnight - time for my system to slow down. Everywhere I go I carry my blue bag which contains weekly meds, diabetic items, my Medicare ID, arm band blood pressure and pulse reader, but the wirst watch is so convenient. I can check my pulse while waiting for the red light to change.

Ken N's May 2 reply to Beth B's April 30, 2007 - Hi Beth, I don't have a specific answer for you other than to relax and move around more - no, just kidding. Yeah, the phase you are in, trying to get your CHF stabilized, is scary. I was afraid, we were all afraid. Always keep in mind that you are never alone. You said your doc is going to meet with you. I hope the objective will be to tell you the next step. Possibly, the next step is trial and error. There are many meds. Each doc has their favorite meds and those are what they tried on you first. As an example, perhaps Lanoxin and sotalol for rhythm with quinapril for the CHF. There are so many possibiles for meds, don't get negative.

Ken N, May 2, 2007 - Okay, I have a Medatronic Insync II Marquis ICD and it has zapped me in 5 or 6 different situations during the past 3 years. Usually I seem to be at fault because combinations of forgetting to take the meds and/or breathing paint fumes and/or getting upset and dumping aderaline or drinking 40 oz of caffine soda - before I know it, I'm in V-fib. My doctor says it all originates with an SA Node problem, then escalates.
     Something just happened for a second time this month, minutes ago. I'm sitting normal here at the computer with a pulse rate of 85. Suddenly my pulse is 100, then 105. I wake up my wife (I don't like to be alone), turn on a fan, get a cold washcloth, attempt my zen-biofeedback to lower the pulse. Minutes later I'm relaxed, my pulse is back to 85 (blood pressure also went lower). So people, do others have this same thing? Have you been told it's your SA node? Talk to me.

Jimmie R, May 2, 2007 - Hi all, I have BBB and now have a pacemaker. This maybe a dumb question to you old timers but when is the best time to take my blood pressure and pulse? Do I sit down or do I stand? It makes a big difference. Do I wait a couple of hours after my Coreg and zestril pills are taken to get the best true readings? I also have been offered the time-release Coreg from the drug company as a coupon for a month. Can I switch right back if it has more side effects than now? Also, I would be interested in that support group that was mentioned a short time ago. Thank you and may God bless. Jim R.

Kooky F, May 2, 2007 - Hi everyone, I am very worried. I was diagnosed with cardiomyopathy, then heart failure. Is it normal to feel so weak and so debilitated that you can't even wash dishes, iron, or even walk without feeling breathless, like there is not enough oxygen going to the heart? My BNP was 330 and my ejection fraction was 51% two weekds ago. Can you feel so severely debilitated even if test results are not that serious? I feel very breathless sometimes, quite often even at rest. I can only walk very, very slowly and only a few steps. It is difficult for me to take shower at this time. I cannot understand it.
     Even if slightly tired, I feel breathless but not panting, of course. It is difficult to explain. For instance, I can't carry anything like a heavy book, handbag, or wear shoes with heels, or even a heavy sheepskin jacket (too heavy) because it means using some muscles which then starves the heart muslce of oxygen. I live on my own and am worried that if I overdo it, I would just end up unconscious. Is this all part of having heart failure - having such severe symptoms?
     Many thanks for help.

Kooky F's May 2 reply to Fred W's April 18, 2007 - Hi Fred, My story is exactly like yours. Ten years later, I was finally diagnosed with cardiomyopathy and heart failure. I was totally disabled and mostly bedbound. breathless upon minimal exertion (I was not overweight), my weight fluctuated dramatically, and I had many disabling symptoms including orthostatic intolerance, neurological problems, fluctuating thyroid function, cognitive dysfunction, and many more painful symptoms. I was given the diagnosis of CFS/ME.
     When strong enough, I went through my own medical records. I concluded that I had an underlying chronic infection. I took it upon myself to test for lyme borreliosis because of my history and life style, and yes, it came back positive.
     I strongly reccomend that you do tests for several bacterial, viral and mycoplasma infections. It is known and accepted within the CFS community that many die because of untreated underlying infections. There has been a lot of publicity within the CFS community concerning those who have died and upon autopsy been found to have inflammation in the spinal cord and some infections in the organs. Recently, a study conducted at a famous university hospital in California found a subset of very ill sufferers like yourself and myself, to be carrying the HHV6 virus. Even those who tested negative were treated with valcicanglovir (something like that), upon which they recovered from being bedbound to being functional again. Ask an immunologist to do test profiles to see if you do have an underlying infection.
     The symptoms you or I have are classic and typical of any chronic underlying infection which has not been treated or responded to treatment. It is classic text book symptoms. An e-mail was sent to you. Let me know if you wish to have more info. It is important that you do tests to find out if you do have an underlying infection. Whether it can be identified or not is not important. I wish I had found out about my infection 10 years ago and I would not not have cardiomyopathy and heart failure. The untreated infection has caused 3 heart attacks and ambiguous cardiac tests over the years and now, finally, heart failure. Good luck and best wishes. Kooky.

Mary C, May 2, 2007 - Hello, Is it just me or do all of you also feel cruddy when the weather changes? I am having a hard time acclimating to the spring/summer season. I am having HA, chest pains, joint pain and so on. Anyone else?

Jon, May 7, 2007 - Hi all, Well, I've fallen into the trap many of us with both heart failure and sleep apnea fall into - taking naps during the day just to stay alive. Wednesday night I have another sleep study to set up my CPAP that was reader-donated. Insurance agreed to pay for the study and CPAP accessories because they didn't have to buy the machine. I hope this will increase my ability to stay both awake and alert during the day. If not, I'm going to look into something like Provigil. Jon.

Laurie N's May 7 reply to Mary C's May 2, 2007 - Yes, I think I am also having trouble adjusting to the seasons. I am new to heart failure, but generally feel more crummy than usual on certain days like when a weather front is coming in. It would be nice to think it is just that, and not a worsening of this ol' heart!

Carol H's May 7 reply to Mary C's May 2, 2007 - Hi Mary, It's always good to know that someone else is weather sensitive. Yesterday it was 85 degrees at home and I felt really good, not only mentally but physically. Today it was a high of 60 and I am so tired and my chest is uncomfortable, besides feeling cranky. Oh well, I know it will warm up again!

David E's May 7 reply to Mary C's May 2, 2007 - Hi Mary, I have gone through the same thing. The warm weather has made it extremely difficult for me also. My breathing becomes labored, my blood pressure lowers, and my arms and legs get tingly after I walk outside for more than 5 minutes. It has been explained to me that my blood has enough oxygen in it, but my heart is too weak to pump it where it needs to go. My cardiologist also said, essentially, that he has done all he can and that right now there is nothing left to do except to wait until I am sick enough to qualify to be on the heart transplant list. Is anyone else in the same boat as me?

Terry H's May 7 reply to Ken N's May 2, 2007 - Hi Ken, That kind of reminds me of my supra-ventricular tachycardia I used to get before my RFA. Any time, any place, without warning, I would go from a heart rate of 70 to 170. It might have been cool if I had been a drag racer.
     I rode that ride for 25 years before RF ablations were improved. I haven't had that fun since. You may laugh at tricks I learned but one that almost always worked to convert me back to normal was standing on my head. That's not to practical when I was in Wal-mart but when in private or with friends, it was highly effective. If I would catch it quickly, bearing down would sometimes also work. At least that one I could do in Wal-mart. ;-)
     I would not reccommend either to anybody else because my situation is only my situation. At the time, after trying every drug on the market it was all I had. I'm not that kind of guy but I would kiss the cardiologist on the lips that did the ablation on me if he were standing here today. Anyway, what you have is probably not what I had but you gave me an excuse to reminisce.

Roger H's May 7 reply to Ken N's May 2, 2007 - Hi Ken, Another book you may want to add would be one co-authored by my cardiologist. Stephen Sinatra and my doctor - James Roberts - have a book called Reversing Heart Disease Now that is available at

Ann L's May 7 reply to Carol H's May 2, 2007 - Hi Carol, I too was taken off ACE inhibitors and given Cozaar. I very much prefer it for comfort since I get very few dizziness episodes upon standing and find that in general I am much more stable and the measurements predictable. I have few episodes of irregular beats that cause me to hold on to things or make it impossible to use a blood pressure monitor and get it to work. My readings are within a decent range with few way low readings for blood pressure and for pulse. I feel good.
     Like you, I question whether I am paying a price for this in the long run by not being on the drug of choice. The cardiologist has already made his case that the results are favorable statistically. It does cost more.
     I have two questions written down for my next checkup. One is, what's the difference between taking Cozaar and going untreated for the blood pressure? Truthfully, I feel so good that I feel that I am not even taking a drug to lower my blood pressure. Keep in mind that I am naturally a person with low blood pressure. My cardiologist wants me to get it as low as possible without fainting so I know he will have an answer and keep me on it.

Debra A, May 7, 2007 - Hi all, I hope someone has an answer to my question, as the doctors don't. I take tikyson and Coreg CR. After I take the tikyson and way before taking Coreg CR, my legs and feet get ice cold. They are that way all the time. The only time I don't feel that way is when I wake up in the morning. Any ideas? How are people doing on Coreg CR? Debra.

Michael K, May 7, 2007 - Hi all, I am looking for a CHF doctor in the Buffalo, New York area for my dad. Thanks and enjoy the day. Michael.

Patrick M, May 7, 2007 - Hi, I have DCM, an EF of 40% for one year now, and am a 24 year old male. Recently my doctor switched me to Coreg CR at 80mg once a day. He says this is equivalent to 25mg twice a day of regular Coreg.
     I am not sure if I like the CR, I think I feel more lightheaded and "out of it." Does anyone else have any opinions on Coreg CR versus regular Coreg? Also, does anyone know anything about any stem cell therapy research studies? Is the only way to get it done by being part of a research study? Any information on the topic will be helpful. Thanks. Patrick.

Bessie H, May 7, 2007 - Hi, I have had CHF for about a 2 years now. I have been taking Lasix for the fluid but they are no longer working and my condition is worsening. I am gaining 3 to 8 lbs a week and have to keep going to the hospital for excessive fluid build up. All the doctors are trying to do is play with the dosage of my meds. I am currently taking 240mg of Lasix. Has anyone had this problem and if so what can you recommend? Thank you, Bessie.
Jon's note: Low sodium diet and a switch from Lasix to torsemide for starters. Also, lose excess body fat if you're overweight.

Abe F, May 7, 2007 - Hi, I had a mitral valve ring transplant combined with a triple bypass done 3 weeks ago. I am 65 years old and have been out of the hospital for about 9 days. They cracked my chest to get to my heart, and I was wondering if anyone whose chest had been opened can tell me how long it took to knit. How can they tell when it's knitted shut again and does the pain go away when it is?
     Other than being pretty slow, I don't feel too bad and can walk around and have even been on my treadmill for 4 minutes at 1-1/2 mile per hour, which was about all I could do. The device is a ring that goes through the mitral valve to help it close, but it is not the clip. If anyone needs to know about it, I will be happy to share information. I feel it is better than the other methods because I don't have to take any anti-rejection or blood thinners as you do with the pig valve or the metal valve, being it does not have any moving parts.
     I would appreciate answers to the chest bone questions, and I know it depends on age, diet, etc,..., but if a few people can give me an answer I can extrapolate from them. Thanks. Abe.

Cary D, May 7, 2007 - Hello, I've had CHF for almost 5 years. I went in for my semi-annual checkup a few days ago. My blood pressure was 70/50 and my pulse was 45. They performed an EKG and found that my heart was beating irregularly. I now have atrial fibrillation. He put me on 4mg of Coumadin (warfarin) initially and has increased it to 6mg after the test results came back. I go back in a few days to give more blood to see if 6mg is enough. Without the warfarin I could possibly develop blood clots. He was also concerned that I could be losing kidney function.
     My question is: I take 3000mg of L-Arginine, 3000mg of L-Carnitine, 3000mg of L-Glutamine, and 2000mg of taurine every day. I have taken these amino acids for some time and have felt great. However, when I was told I may be having signs of kidney failure I began to wonder. I now have learned that too much protein is bad for your kidneys. Could the amino acids I am taking be causing my kidney problems? Any help would be appreciated. Thank you.
Jon's note: Not likely in the amounts you take. If it were me, I'd drop the glutamine and increase the taurine to one gram 3 times a day. Talk to your doctor about it too.

Janice S, May 7, 2007 - Hello, I am the primary caregiver for my 27 year old daughter who has end-stage cardiomyopathy. She was orignally diagnosed in 01/2006 with peripartum cardomyopathy following the birth of her last baby. Her EF at that time was 25%. She went a year and half without medical supervision and was admitted to a hospital 03/2006 following a heart attack. Her ejection fraction was 10% and the doctor performed a heart cath, which looked good, and implanted an ICD.
     She was IV drug-dependent to keep her blood pressure adequate for 3 weeks and consideration was given to implanting an LVAD, but with no insurance that was not an option. She finally became stable on oral meds and was dismissed after 30 days in CCU.
     She has been doing reasonably well but her activity is extremely limited. She also continues to have chest pains, which sent us to the ER last night. Nothing significant was found, so they sent her home with more pain meds and anti-anxiety drugs. Her best hope is to get insurance as my dependent and get on a transplant list. This is a very comprehensive site and I have found it most enlightening.
Jon's note: Have they given her nitro tabs for chest pain?

Barb N's May 8 reply to Jon's April 7, 2007 - Hi Jon, Regarding CPAP, sleep, and provigil. Please be sure to give CPAP a good trial period. I found it took me about 6 months to get used to sleeping with something on my face and to get over the sleep deficit from not sleeping well for years. I had to try a couple of different masks to find one that I didn't "accidentally" remove at night. About provigil, I tried this (at the lowest dose) for a few months. I loved the unusual feeling of being alert but had marked increase in PVCs and SOB. These went away when I stopped using the provigil. I gave myself another week's trial several months later and the rhythm disturbance returned, this time with angina. Your mileage may vary but based on this experience I suspect provigil is not too good a choice for CHFers.

Jon's May 8 reply to Barb N's May 8, 2007 - Hi Barb, I've already tried the different "face gear" and only one kind will work for me due to my beard and the positions in which I sleep. This was tested during my first sleep study.
     Heart failure is no longer my most concerning illness, although it is all tied together with the others. Between weight lifting, body weight loss, and 13+ years of heart failure treatment, my heart failure symptoms are not as pronounced as my symptoms from rheumatoid arthritis, bursitis, near-lethal low testosterone levels, restless legs syndrome and sleep apnea - among others.
     I don't start more than one new therapy at a time so I can spot where immediate side effects come from, but my sleep problems are at the desperate stage now. I just have to see what works and what doesn't. Jon.

Janice S' May 8 reply to Jon's May 7, 2007 - Hi Jon, No, the doctor has specifically stayed away from nitro due to its ability to lower her pressure. They were happy to keep her above 80 in the hospital and so that didn't want to do anything systolic to lower it anymore than it already was. They also can't give her Coreg, although she was on it when she was originally diagnosed.
     Her doctor referred to her pain as "chest wall" pain, which I guess refers more to the muscle surrounding the heart rather than the heart itself. I took her to the major metropolitan emergency room in our area last night (05/2006) and they are keeping her a couple of days to revaluate her, possibly tweak her meds, and do another echo. She mainly stays asleep because of the pain meds.
Jon's note: Personally, I seriously doubt that this is musculo-skeletal pain so I doubt that doping her up is the right way to handle her pain. This sounds like an excuse coming from a doctor who can't bring himself to say those 3 little words - "I don't know."

Roger H's May 8 reply to Abe F's May 7, 2007 - Hi Abe, I'm thinking the knitting is about 6 weeks. That is how long it is before you can drive. That's what I was told anyway. After two separate bypasses, you'd think I'd remember! I think most of the pain was gone in 4 to 5 weeks.
     Jon, talking of sleep studies, I found out how bad my insurance really is. My last one was $3400 and the insurance paid $2800 leaving me with about $600 to pay! Plus I got two other bills from the hospital all totaling over $1000. Here I am, going to retire June 8th. People at work say I'll have to stay longer to pay the bills. I say the hospital will have to wait a little longer!

Mary C's May 8 reply to David E's May 7, 2007 - Hi David, Get a new doctor. Go to the Megaheart web site ( This man was dying and he did stuff and turned his life around, and he avoided a heart transplant.
Jon's note: And he answers e-mails personally. He's a good guy.

Jon, May 12, 2007 - Hi everyone, Well, as you may have guessed, the sleep study for some reason pretty well did me in for a few days. Hopefully, this too will pass, although like all of us, sometimes I wonder.
     Also, my wife Linda wants me to tell you that she is behind on acknowledging donations due to her MBA courses plus work. She's sorry and will try to catch up soon. Jon.

Mary C, May 12, 2007 - Thanks everyone, It is nice to not be crazy. The weather thing is real. I went for a walk yesterday with my new rescue dog, and almost fainted. I broke out into a sweat and felt really dizzy. t is just 10 degrees F hotter. I went to my regular doctor and he didn't seem concerned. I don't see my specialist until August.

Peter S, May 12, 2007 - Hi all, It appears that I will join Jon and many other CHFers with the challenge of dealing with sleep apnea. I am not officially diagnosed but will consult with a pulmonologist (all in coordination with my cardiologist) in a few days. Symptoms include waking up after two hours or so after going to bed with severe breathlessness. If I stay awake thereafter, the problem recedes, but if I doze off - even for a few seconds - I have to take several deep breaths to feel back to normal. This doesn't do much for a good night's sleep.
     The onset of my symptoms cropped up very suddenly only a few weeks ago but is now a daily event. In researching Jon's site and other sources I have picked up a lot of information, but I can't seem to find a clear definition of the difference between "central" and "obstructive" apnea and the difference in treatment that results. Any feedback would be appreciated.
Jon's note: Obstructive is just that - something obstructs your airway when you lie down and relax, as in sleeping. This can happen when you're too fat or have an abnormally large tongue or other mouth or throat part. CPAP is usually used to force the airway open with air pressure. Central apnea is when your brain doesn't send the proper message to your body to take breaths during sleep or when your body does not properly receive or interpret those signals. CPAP, BiPaP, or even better, the newer VPAP machines can aid central sleep apnea by forcing you to breathe a certain number of times per minute.

Joy K's May 12 reply to Debra A's May 7, 2007 - Hi Debra, I read with great interest your post regarding icy feet and legs. I am not on Tikosyn or on the time-release Coreg. However, I have experienced the icy cold sensations around my mouth, neck and partway down my chest. This occurred when I first started taking Coreg. It happened about one hour after I had taken my evening dose. It was a very scary feeling for me. It felt like I was being slowly frozen to death. I had much difficulty with breathing but I wasn't gasping for breath.
     I spoke to an on-call cardiologist who insisted I had flu symptoms. I knew I did not. These symptoms persisted every time I took Coreg and no one seemed to know why. I called the drug company that makes Coreg. They told me that unless one percent or more of people experience a specific reaction they do not print it/report it as a possible side effect. The person I spoke to cautioned me about continuing Coreg.
     I was having so many med reactions at that time I was forced to discontinue all medications for approximately 3 months. I restarted extremely slowly on Coreg. It wasn't even at the usual 3.25mg starting dose. That was in 2001. Today I am at my target dose for Coreg and often I experience the coldness, especially around my mouth. At times it seems behind my eyelids also. I do not experience any swelling, increased shortness of breath or even itching. The icy feelings, numbness, have not worsened with my increase to the target dose. I do know for me, it has not happened with any other drug. I hope you find a solution. Joy.
Jon's note: Have you been tested for any indications of hyperventilation? Coreg does affect the lungs (asthmatics rarely take it) and your symptoms are in line with shallow breathing and improper gas buildup in the blood.

William J's May 12 reply to Kooky F's May 2, 2007 - Hi Kooky, I was wondering if you had talked to your doctor regarding possible water retention on your part. I have on and off breathing problems and have kept my weight at the same measurment for the past year and a half (6 feet tall and 170 pounds). However, it seems when I drink more fluids my breathing can become labored. I ugraded my Demadex from 10mg to 20mg based on my doctor's instructions and after awhile the breathing will improve. Talk to your doctor about your situation. Bill.

George C's May 12 reply to Bessie H's May 7, 2007 - Hi Bessie, I have been taking 40mg furosemide for several months and it was working fine. I just went to my cardiologist and told him that recently it was not working as before and he prescribed me metolazone at 2.5mg and slow-release potassium chloride at 20mEq to be taken a half hour after the furosemide only when needed. I hope it helps.
Jon's note: Don't eat within 2 hours before or after taking furosemide and its effectiveness will also increase.

Roger N's May 12 reply to Janice S' May 8, 2007 - Hi Janice, Have you ever heard of Ranexa? My doctor told me they did not know why it worked but that it did and it does. I had what he described as pain in my heart muscle itself. I started out at 500mg of Ranexa twice a day and have had to increase it to two 500mg pills twice a day, but it works. It makes me tired but no other side effects and I am generally pain free.

Jon, May 15, 2007 - Hi everyone, Perhaps my life will settle down sometime soon but of course, it's not likely. That's life, huh? <g> My puppy is past all the problems except teething. Imagine adult Rottweiler teeth coming through baby Rottweiler gums and you understand why Rottie pups will eat your house - literally - if you don't watch them without a moment's fail.
     However, puppy Jack is much better behaved than his namesake, so much that I started full weight training again 2 days ago and have been too sore to move, much less type. Hopefully, only the next few days will hurt that much.
     My daughter is moving in with us till her wedding next fall to financially prepare, a very smart move since we can't pay for her wedding so she will be paying for it. She's studying for her 4 CPA exams and companies are starting to headhunt her after less than 2 years in the business so she's superb at her job. Since she loves big Rottweilers, our dog will be no problem for her. In fact, she was the only human who inspired true fear in our last male Rottie. <g>
     Hopefully someday I'll catch up on e-mail but so much comes in that I'm still 2 weeks behind. I'm doing my best everyone, really. Jon.

Dannie B, May 15, 2007 - Hi all, We are in a very bad predicament. My father (62 years old) in Australia has end-stage CHF and end-stage renal failure. Last week he had two cardiac arrest episodes as a result of a potassium crash (2.8) after which they took him from CCU to ICU and put him on a breathing machine. After 24 hours, they took him back to CCU where he complained of feeling dizzy, nauseous and lightheaded, for which they did nothing. About 45 minutes later he went into arrest again. He has an ICD which fired but they had to use the paddles as well.
     He has serious fluid overload and his cardiologist agreed to aggressively remove fluid at 100mL/hr then 200 and now 300mL/hr with dialysis. This was an attempt to remove his dependence on noradrenaline (he's on dobutamine as well). He was off noradrenaline for about 3 hours and is now back on double-titration at 8mL/hr. We are concerned that the fluid has not had time to migrate from his lungs to the space created from the fluid removal. The ICU staff are asking us to say goodbye. He's extremely upset because they're telling him to die. His cardiologist is giving him a 10 to 20% chance of survival and believes he can still become less dependent on noradrenaline as the fluid shifts - maybe.
     Can anyone please give me some hope? Is there anything you can think of or help with? If you have something you can suggest, I will give it to his cardiologist who is clearly pushing the boundaries here. I don't want him to die. If there is something you have that you think might be useful please call me on +61 411 112 777 as I may not be able to check this regularly - or e-mail me. Thank you. Danny.

Janice S' May 15 reply to Roger N's May 12, 2007 - Hi Roger, Thanks, I will give it a try. She is back in the hospital with the same pain. They are supposed to be trying MS contin and pain management but I will ask her doc about Ranexa. Regards.

Debra S' May 15 reply to Jon's May 12, 2007 - Thank you Jon, That's very interesting info. I really don't know if I have ever been tested. I have had that test where they put a clip on your finger. I was at 98%. My doctor did say that beta blockers do cause that cold sensation. The pills are worse than the illness. I wish your daughter much luck, love and happiness. Debra.

Joy K's May 15 reply to Jon's May 12, 2007 - Hi Jon, I have had pulmonary function testing done in the past. Before being diagnosed with cardiomyopathy I was referred to a pulmonologist and was diagnosed with adult onset asthma. One part of the testing showed a below normal score. One year after diagnosis of cardiomyopathy I again saw the same pulmonologist who repeated the test and also did a few others. The scores all came back within normal limits. In some areas I had made improvement. I am not aware of hyperventilating. My respiratory rate is on the lower end of normal. Joy.
Jon's note: Just a guess. I had normal lung function test results right before a hyperventilation episode that cost me an ambulance ride to the emergency room in very bad shape. I don't remember any difference in my breathing but was told it was far more shallow than usual.

Terry H, May 15, 2007 - Hi Jon, How did your sleep study turn out. Did they reccommend a CPAP, BIPAP or VPAP? Central apnea here. I have tried both CPAP and BIPAP settings and after a few months of trying different masks have found a combination that is working pretty well. Don't overlook the importance of a good sleeping surface. We bought a Tempur-pedic mattress and I have found that I move very little now. I have slept on all brands of mattresses and water beds in my life but have never been more comfortable and moved less in my sleep.
     I used to worry about dying in my sleep. Now with the heart meds, ICD, Bipap and good sleeping surface, I look forward to nighty time.
Jon's note: The reader-donated machine I use apparently is top of the line, high-tech, and can do about anything. The company's tech support rep was suprised I was just using it for CPAP. <g> The newest nasal pillows are so comfortable I don't notice them and the machine is so quiet that my wife says it lulls her to sleep.

Debra S' May 15 reply to Joy K's May 12, 2007 - Hi Joy, Thank you so much for the reply. I have really bad side effects from medications. The cold feeling is just as you described it. I keep telling myself that it is distressing but not dangerous and that I have to be on the meds. Right now I am feeling very sorry for myself. That is why I so appreciate this web site. I haven't found another nearly as good. Debra.

Mary C's May 15 reply to Cheryl S' April 19, 2007 - Hi Cheryl, Remember stress is stress. Even though you were doing a good thing for yourself, it caused stress. Our bodies react to good stress and bad stress the same way. Don't give up. Just do it in smaller bites.

Mary C's May 15 reply to George C's May 12, 2007 - Hi, Lasix never worked for me. I went to Demedex, because of abdominal edema, not edema in hands and feet. My fluid is mostly in chest and abdomen.

Sue H, May 15, 2007 - Hello, My husband has been on lipitor for 3 years. Recently he has been experiencing severe muscle soreness. Does lipitor cause this, and if so, what else can you take that gives you the benefits of lipitor without the muscle soreness? Thanks a lot for listening. Sue.
Jon's note: Have him contact his doctor immediately!

Jimmie, May 15, 2007 - Dear Jon, I hope this finds you well. For imformation's sake, GSK is starting a promotion on Coreg CR. They are giving away coupons for those who qualify for a 30-day supply of Coreg CR. I talked to them on the phone and they also offered a 90-day supply for us without insurance still. It is well worth the time spent and can mostly be done online. I also checked out your wife's site and it is nice. May God be with you. Jim Rowan.

Tom C, May 18, 2007 - Hello fellow CHFers, Does anyone know how many who get biventricular pacemakers feel better? Does it take a long time sometimes? I got mine March 5 and feel roughly the same through today: tired, weak, short of breath, nauseous a lot, etc. I was diagnosed 4 years ago, did not qualify for CRT until now because my bundle branch blockage numbers weren't bad enough.

Mary C, May 18, 2007 - Hey, I went to the doctor today. I was feeling crummy. I now have acute bronchitis and asthma. I am to do albuterol 3 times a day. It makes my heart go really fast. What are the guidelines for asthma meds and SHF? I can't find them in the guidelines but I am feeling really gross so that could be it.
Jon's note: Generally speaking, asthma meds are really bad for CHFers. Are you sure your doc has not mistaken increased CHF (called "cardiac asthma" by many doctors) for asthma, due to the spell of bronchitis?

Gene B, May 18, 2007 - Hello, I guess that I may be the only or one the few LVAD (left ventricular assist device) people on this site. My LVAD was implanted in February of this year and is functioning very well. If anyone has a question that I can help you with, I've got about 14 years experience with a heart valve, dacron aorta and ICDs, so I may be able to help someone. Gene B.

Scott B's May 18 reply to George C's May 12, 2007 - Hi George, I also noticed several years ago that the diuretic effect was not as good as it used to be. I was concerned my kidney function was worsening. My cardiologist correctly suggested that the diuretic will be most effective when you are retaining the most water. If you are relatively "dry" because you take a diuretic regularly, the diuretic effect will not be as great.
     I take my diuretic according to my weight as opposed to taking it every day. I thought my body was getting used to the 40mg dose every day and it was far more effective this way for me, although more inconvenient. Obviously, if you are retaining fluid and the diuretic is still not working, this is a different problem. Scott B.

Mary C, May 18, 2007 - Hi all, I used to use generic Plavix. Now they pulled it off line and I have to use the expensive brand name drug. Does anyone know why? Also, I am thinking of hitting up my cardiologist or neurologist for samples. It is expensive and my insurance won't pay a lot on it. I can't be switched to other meds for long reasons. Any ideas?

Jon, May 21, 2007 - Hi everyone, Handling a new flea collar for my dog made me sick as a dog , with fatigue, intense intestinal upset and diarrhea. The thing gave him the same problems. So much for that idea, we'll just have to use flea and tick shampoo when we bathe him and watch for ticks, removing them the old fashioned way, with tweezers. Jon.

Roger H's May 21 reply to Jon's May 18, 2007 - Hi Jon, Those nasal pillows are really the cat's meow, aren't they? I can actually breath a lot better using them compaired to the other masks that seemed to cut the air off. Glad you are doing better.
Jon's note: They are great. My only problem is being too aware of the CPAP after getting up to use the restroom during the night.

Gene B's May 21 reply to Tom C's May 18, 2007 - Hi Tom, I had a biventricular pacemaker implanted in November of 2005. The device is a little tricky to get "tuned" properly for the biventricular portion to give relief. When my doctor and the Guidant rep got together and figured out the settings for the left and right ventricals, relief of my symptoms occurred in a few minutes. Unfortunately, my CHF got worse in 2006 and I was able to get a LVAD implanted as part of an FDA test program for the Thoratec Heartmate 2 LVAD in February of this year. So far, so good. Gene.

Mark M's May 21 reply to Tom C's 5-18, 2007 - Hi Tom, I did a fair amount of research on biventricular pacemakers when we were actively considering getting one for my wife. Since then, we have decided to hold off for a while, mostly because she does not have much dyssynchrony and her QRS interval is not too extreme.
     From what I was told, improvement was a 50/50 chance, but it was much more predictable when the degree of dyssynchrony was considered. One thing is for sure, the risk of death goes down significantly, even if your EF doesn't. Part of this, of course, is associated with having an ICD/pacemaker combination device.
     There is a large study going on right now called REVERSE, which should shed some more light on the statistical improvement. I don't know when the first year's results will be released; hopefully by the end of the year. Mark.

Gene B's May 21 reply to Janice S' May 7, 2007 - Hi Janice, Thoratec is in the process of FDA approval for their Heartmate II LVAD. You might want check out the Thoratec website at Advocate Christ Hospital in Oak Lawn, Illinois (708-346-4040) Dr. Mark Slaughter is participating in the FDA testing. My EF was very low like your daughter's and Dr. Slaughter installed my device. I think that the FDA picks up a pretty good portion of the cost. I'm on Medicare and have a supplemental insurance and it has cost very little. Maybe you could see if your daughter is eligible for Social Security\Medicare benifits. Gene.

Theresa B, May 22, 2007 - Hi everyone, This is my first post on this extremely informative website. I've just been diagnosed with CHF and DCM and have started lots of meds. I'm also diabetic and still trying to get that under control and just went on medication for it. I'm trying to figure out how to take all these new meds the most effectively, without causing problems with the CHF and diabetes. Any help would be greatly appreciated.
     Here's what I'm taking:

I take a multi-vitamin in the morning and a 500 mg calcium supplement with breakfast and with dinner. I also take an 81 mg aspirin tablet in the morning. I've been taking all the heart meds and the glimepiride in the morning with breakfast and the Vytorin at bedtime (along with Effexor XR 150 mg for depression). I'm concerned about the metformin after reading the information on this web site.
     Also, I'm concerned about regulating the blood sugar with the Coreg and Lisinopril causing increased blood sugar. Any ideas about the timing of the meds or if I should not be on metformin? Thanks so much! Theresa.
Jon's note: First, take Coreg one hour after eating at bedtime to minimize side effects. Take your ACE inhibitor at the other end of the day. The rest I leave to other posters here.

Jon, May 22, 2007 - Hi all, Sorry for the delay again! My wife and I had to bring a truckload of stuff from our daughter's apartment to our house and set it up while she got things ready for the movers to move the rest to storage. Jon.

Ken N's May 22 reply to Dannie B's May 15, 2007 - Hi Dannie, I wish I had a helpful reponse to your post but I don't. I am confused by some info and don't understand your father's medical condition. You spoke of his dependence on noradrenaline which I understand is for use in low blood pressure emergency situations and is not to be used for long-term treatment. Noradrenaline normally produces effects such as increased heart rate, increased blood pressure, dilation of pupils, dilation of air passages in the lungs and narrowing of blood vessels in non-essential organs.
     You also spoke of his two cardiac arrests. I have also gone into cardiac arrest (and have an ICD). Give me noradrenaline and it would quickly push me into cardiac arrest. I don't understand the how and what and why of your dad's medical care. Why is he given noradrenaline? What is the cause of his cardiac arrest?
     Also, on his potassium crash, what caused that (overwhelmed by the kidneys)? I take potassium daily and it is about the lowest price drug that I take. Has he been on potassium? I don't understand.

Scott B's May 23 reply to Dannie B's May 15, 2007 - Hi Dannie, I don't know what the rules are in Australia but I am assuming there is a reason your 62 year old father was not on a heart transplant list? In Canada, 60 is generally about the cutoff for such operations, however, I don't think your father got into his current state overnight. Someone in the US can comment on the US situation but I have heard they will transplant old people, and will transplant old hearts as well. (Jon's comment - 65 to 70 is the usual USA cut-off and see for older heart transplants).
     Failing transplant, perhaps you could try the blood stem cell treatment from Theravitae, or there is some great work going on in your own country. See On one hand, you don't want your dad to suffer while on the other hand, people do pull through. It sounds like he is aware enough to be familiar with his surroundings so that is at least, a positive sign. Best of luck.
     My 61 year old father had a number of close calls in ICU for many weeks at a time and he did get a heart transplant. However, I know every situation is different.

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, 2007 Jon C.

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