The paperwork never ends The Archives
April 1-15, 2007 Archive Index CHFpatients.com

Marty C 4-1     problems with device implant experience
 
William J 4-1     seek liver function experiences
 
Emmanuel D 4-1     ICD and testing questions
 
Jon's 4-1 reply to Emmanuel D's 4-1     ICD and testing
 
James C 4-1     Coreg CR experience
 
Cheryl S 4-1     how do you control this kind of physical "stress" ?
 
Tom S 4-1     what is NCIM?
 
Loretta D 4-1     seek CHF specialist in Augusta, Georgia
 
Jacky B 4-1     seek ICD implant experiences
 
Laurie N 4-1     seek CHF specialist in Minneapolis/St. Paul area
 
Mari S 4-2     Coreg CR
 
Winston L 4-2     seek info about British financial aid for pacemaker
 
Tom S' 4-2 reply to Jacky B's 4-1     device implant experience
 
Jon 4-4     delay is puppy's fault this time!
 
Stacey J 4-4     questions about end-stage heart failure
 
Debra A 4-4     chronic pericarditis - anyone else?
 
Tunny G 4-4     device optimization helped me enormously
 
James C's 4-4 reply to Emmanuel D's 4-1     not getting too focused on EF number
 
James C 4-4     links to implanted device information
 
Sharon S' 4-4 reply to Winston L's 4-2     Britain's health care system
 
Mary C 4-5     if it's not one thing, it's another!
 
Tamara C 4-5     digoxin mess and questions
 
Jon's 4-5 reply to Tamara C's 4-5     digoxin
 
Brian M 4-5     how long does it take to get SSD check once approved?
 
Mary C's 4-5 reply to Winston's 4-2     cherries and gout
 
Jerry B's 4-5 reply to Brian M's 4-5     getting your first disability check
 


Marty C, April 1, 2007 - Hi, This is food for thought for those who are "on the bubble" deciding whether or not to get an ICD. When I was diagnosed with dilated cardiomyopathy 3 years ago, I did have LBBB but was otherwise not symptomatic, with an EF of 30 to 35%. I had no history of V-tach, just tachycardia. The cardiologist I saw was wishy-washy on whether to place the ICD, but the electrophysiologist he sent me to told me I could drop dead at any moment. I chose to get the device implanted immediately.
     When the doctor placed one of the leads next to my heart, the doctor punctured my heart wall. It was not detected during the procedure and they sent me home. The next day I couldn't breathe, rushed to the hospital in cardiac tamponade with no blood pressure and a very weak pulse. The procedure they used to release the blood from around my heart was the most painful experience I could even imagine. I wanted to die, it hurt that bad. On the fourth stab they got it, and the relief was immediate, yet some of the effects still linger.
     Now I've had the device for 3 years with zero shocks, not that I want any, thank you. Based on the information I had at the time, it was a good choice - I was told only one percent of device implants had problems. Based on the information I have now, I don't think it was a good choice for me. Hindsight is 20/20.
     The key is to take time to carefully consider these kind of decisions, weigh it all out, and perhaps get a second opinion. I hope this helps someone in a similar situation. Marty. padre45@aol.com


William J, April 1, 2007 - Hi, I always ask for copies of my blood tests and have all of them for the past 15 years. I believe it is good to use them for comparison. One of the enzymes they test for liver function is Alkaline Phospatase others are Bilibirum, SGDT and SOGT. In going over my latest blood test I noted that my current Alkaline Phospatase was over the upper limit at 156. Prior to my heart attack all previous blood tests showed an average of about 86, which is well within the normal limits.
     I checked the blood test the day of my heart attack for my Alkaline Phospatase reading and it was about 90. Fourteen days later it was 137. That was a year and a half ago. A high reading could be indicative of some causal affect going on within the body and liver, one of which can be heart failure. I will be seeing my PCP regarding this matter as my cardiologist doesn't like to deal in such matters.
     My question is, has anyone in this forum had their Alkaline Phospatate as recorded in their blood tests, show an unusual rise since their diagnosis? Budjoy4@aol.com


Emmanuel D, April 1, 2007 - Hi, I was diagnosed with idiopathic dilated cardiomyopathy last January of 2006 and I am largely asymptomatic up to this day with no symptoms of fatigue, swelling, or shortness of breath. I currently take Coreg at 25mg and lisinopril at 20mg, twice a day. Recently, my cardiologist suggested an ICD. I then asked the cardiologist my concerns about ICD such as the recall, drawbacks and advantages. I also asked about my EF. I have had 3 tests previously done on me for this - two echocardiograms and one angiogram. The first echo was done 11/2005 and my EF was 13%. The second echo was performed 12/2006 and EF was increased to 24%. There was an improvement but not remarkable, said my cardiologist. I then inquired about my angiogram (cath) that was done 01/2006 after my first echo. No blockages were found and my EF was 35%.
     I then asked why the difference in EF results between the two methods. Is there a more accurate way to do EF testing? My cardiologist then suggested a MUGA test and prescribed additional medication, Aldactone (spironolactone). While waiting for the medical insurance approval for the MUGA test, I have some questions to ask myself:

  1. Being asymptomatic with questionable EF, is it wise to consider right now an ICD procedure as my cardiologist has suggested?
  2. Should the MUGA results be my ultimate guide to have the ICD?
  3. Is my cardiomyopathy reversible? Should I expect the worst?

endc12@yahoo.com


Jon's April 1 reply to Emmanuel D's April 1, 2007 - Hi Emmaneul, Cath is either just as accurate or more accurate than any other method for measuring EF. Echo has roughly a plus or minus accuracy of 6 to 8% but it's non-invasive and a whole lot cheaper than the other methods.
     At an EF of 35%, you don't really have a need for an ICD based on the info in your post alone. Many doctors consider low EF alone to be enough to merit an ICD but the cutoff for that is 30%. If you have some other risk factor such as family history of sudden death or if you have an arrhythmia, fainting spells, etc,..., then you should have an ICD no question. If low EF is the only reason he suggests it, all I can say is to read up and consider it carefully.
     Don't place too much reliance on numbers alone. See chfpatients.com/archives/archives_search.htm#mortality_testing_and_numbers. Read The Manual at chfpatients.com/CHFinfo.htm for more on what to expect. Jon.


James C, April 1, 2007 - Hi everyone, I'm sorry I gave the wrong e-mail address in the last post. I'll try to answer everyone's questions here. As Jon was saying, Coreg CR (Controlled Release) is a once-a-day version of Coreg. GSK now refers to regular Coreg as Coreg IR (Immediate Release). Each 3.125mg of Coreg IR taken twice a day is equivalent to 10mg Coreg CR taken once a day. The following link has a dose conversion chart and a graph of blood concentration over time for Coreg CR vs. Coreg IR: http://www.coregcr.com/hcp/hcp.html.
     I'm 28 and have asymptomatic non-ischemic IDCM, LBBB, LVEF 45%, and Vo2max about 50 ml/kg/min. I was diagnosed about 3 years ago after a routine EKG showed the LBBB and a subsequent echo showed an EF of 50%. I was on 10mg lisinopril which was working fine until about 6 months ago when a routine echo showed an EF of 35%. For the last 6 months I've increased the lisinopril to 25mg once daily and got up to 6.25mg Coreg BID. About a month ago I moved to 9.375mg Coreg BID and about 5 days ago I moved to 40mg Coreg CR once daily (my general cardiologist gave me some samples).
     I certainly have some side effects from the change including occasional postural hypotension, heart rate dropped to about 45 beats per minute, mild fatigue, increased appetite and it has really limited my heart rate when I'm running to 130 from 160. Having said all this, I should make it clear that I changed to a slightly higher than usual "equivalent dose" in Coreg CR so the side effects might not be due to Coreg CR alone, but rather to Coreg generally. I'm sticking with it and I do think it's getting better. I had a similar experience starting Coreg initially and those symptoms went away after a few months.
     As for cost and availability, what I can make out is that it's supposed to have nationwide availability according to Flamel Technologies, the company who developed the Micropump technology for the controlled release. Under my insurance, Coreg IR is $25 per month and I believe Coreg CR has been added to the preferred drug list as a non-generic so it will also cost $25 per month (or twice that if I'm wrong and it's not on my list). The insurance company claims that Coreg IR costs them $111.80 per month and that Coreg CR costs them $106.54 per month so there isn't much difference. Of course the price difference will be much bigger in the coming months when generic carvedilol is released.
     The only other point I would add about Coreg CR is that it must be taken with food and there is a section in the prescribing information titled "Effect of Food" dealing with this if you want to know more at http://us.gsk.com/products/assets/us_coregcr.pdf. Debra, how long did you stay on Coreg CR before you switched back to Coreg? Mari, what drugs were you on before your EF dropped to 25% in November 2006? Do you know if it has improved since then? Regards, James. jamesnyc360@yahoo.com


Cheryl S, April 1, 2007 - Hi all, This past year has been very difficult in terms of major losses and life-stressing events over which I've had no control. I spent the fall battling heart failure symptoms, only to improve for a few months then to get hit with some equally bad shocks. I'm pretty spiritual, pray a lot, have good friends and support systems and try to put as much positive in my head as I can.
     However, with the most recent upheavals I started to experience some early heart failure symptoms again, such as nausea, fatigue, loss of appetite and insomnia. My cardio increased my beta-blocker and got me a counselor, which has helped some.
     What I would like to know is if anyone has any way I may not have thought of to prevent those big drops of nasty self-made steriods and catecholines from dropping inoto the blood stream. Because of arthritic damage and pain, exercise is pretty much limited to a couple hours a week in a therapy pool. cas22can@yahoo.com
 
Jon's note: Have you asked your doc about biofeedback training for lowering blood pressure? It gives you a way to help control stress.


Tom S, April 1 2007 - Okay, I'm stumped. Once again the great state I live in is forcing me to have a medical evaluation to determine whether I am a road hazard. My cardiologist filled out the form and entered "NCIM, afib" as the diagnosis. What is NCIM? bhigheart@muchomail.com


Loretta D, April 1, 2007 - Hi all, Please help me find a congestive heart failure specialist in the Augusta, Georgia area. I have had CHF since 1999 and have been on disability since 2001. I have worked hard to lose 150 pounds, taken my meds, used my CPAP equipment every night, undergone weight-loss surgery, hernia repair and a mastectomy. Now my regular cardiologist says he doesn't feel he can support my disability any longer.
     I still get tired every afternoon and can't handle much exercise. I'm still depressed and being medicated to help me sleep and for my restless leg syndrome. The thing is once I've lost my disability, I will not have insurance any longer. I would like an opinion from a specialist before losing my insurance and disability.
     I'm willing to go back to work, but I feel it may lead to my death if my doctor is wrong. I can't handle stress very well. I'm also afraid I may not be able to obtain work because employers may consider me too old (58) and a health risk. What can I do? Loretta. lorettad7@comcast.net


Jacky B, April 1, 2007 - Hi everyone, The docs have recommended I have an ICD implanted. My second opinion agreed. Can someone please tell me the recovery time after this? I am mainly thinking of activity, as I have plans for the summer which I shall work around the surgery. Also, how long were you in the hospital? Any info would be appreciated! Thanks. jackymwb@earthlink.net


Laurie N, April 1, 2007 - Hi, I am 51 years old and in resonably good health, I thought! Five months ago I was diagnosed with CHF with a BNP of 615 and and EF of 22%. After 2 more echos and a new drug regimen, my EF hasn't changed although my BNP is now down to 108. I have been told I need an ICD but am nervous about that and want to get a second opinion.
     I currently have a cardiologist but not a heart failure specialist. Does anyone recommend one in the Minneapolis/St.Paul area? Thank you! busylives@aol.com


Mari S, April 2, 2007 - Hi all, I went to the cardiomyopathy clinic Thursday and it was suggested that I try Coreg CR, due to how I have to take the regular Coreg (small doses every 2 to 3 hours). I asked if there were any new side effects with Coreg CR and was told the one thing that you cannot do with Coreg CR is have alcohol. It will take away the time release action and turn into a regular dose immediately.
     I am wondering if any of your doctors that have put you on Coreg CR have told you this? This is not a problem for me, myself, but thought I should pass this along. I would like to hear from anyone that is on Coreg CR and how they are doing on it. I'm not at the 25mg twice a day Coreg dose yet, but that is our goal, then I can switch. It will be so nice to take only one pill a day of Coreg instead of how I'm having to do it now. MS254@aol.com
 
Jon's note: Almost all time release prescription meds will dissolve too fast in your system with alcohol intake.


Winston L, April 2, 2007 - Hi, My name is Winston Lykins and I am an American who has just recently befriend a person who lives in England. This person is a really wonderful friend. She has a pacemaker and the battery has gone bad and she needs a replacement battery but is unable to afford the cost. Do any of you who live in England know of any agencies that provide assistance in these situations?
     The doctors have said that she has about 5 months of battery power left after that it would be a bad situation if her heart stops. I don't usually type these kind of things but then I have never had a friend to make me laugh and one who understands people like this person does. I would appreciate any and all information that could be provided. Thanks. cwlykins@yahoo.com


Tom S' April 2 reply to Jacky B's April 1, 2007 - Hi, I wouldn't say there is any specific recovery time with an ICD implant. I had mine implanted in April of 2006 and it was an overnight stay in a niche of a room that was located in the local hospital cath lab where implants are performed.
     While it is not really painful, before-during-after you still know that you have a lump of something that you never felt before in the upper left quadrant of your chest. I have had some discomfort from the device and I have heard others who say that is quite painful if you whack it in some fashion. Then there's the guy who used it as a brace for his electric drill. Go figure. bigheart@muchomail.com


Jon, April 4, 2007 - Hi everyone, Well, this time the delayed posts are the puppy's fault! He's settling in now, an 8/1-2 week old Rottweiler pup. ;-) Jon.


Stacy J, April 4, 2007 - Hi, My father (age 69), has end stage CHF. What exactly classifies someone as being end-stage? When he was hospitalized last Fall (he was just recently hospitalized again), his BNP was 1500. Does this number fluctuate much?
     During his recent hopsitalization, they were able to lower his serum creatinine to 1.7. Already, not even 2 weeks later, it's already back to 3.2. Lasix doesn't seem to work anymore but his cardiologist doesn't seem interested in trying something else. He's been going for so long (many, many years) with CHF that we just don't even know what to expect anymore. He did have a pacer installed a few years ago.
     Looking forward to learning more here. Thanks. staceyj@optonline.net


Debra A, April 4, 2007 - Hi, Does anyone else have trouble with pericarditis as well as CHF? I find when I treat the CHF and get the fluids off, the first place I then retain fluid again is the pericardium. This is terribly painful and difficult to get under control I am wondering if anyone has tips for how to treat the CHF without causing the pericarditis? dma98003@yahoo.com


Tunny G, April 4, 2007 - Hi Jon, I just would like for everyone to know what I have been through and where I am at now. Like a lot of us, I had a TIA and this is when I realized I had big problems. Also, like most of us, I had test of the usual types - heart cath, electrocardiogram, sleep study, and such. I was place on a CPAP that helped me tremendously. Also, as months went by, I was placed on different types of medicines, hoping to find which was best for me. My doc told me that my chart was just a mess to look at. All my signs were terrible- Vo2max terrible, ejection faction of maybe 15%.
     Although with a terrible looking chart, I seem to do better than my chart indicated. I was doing a heart transplant work up which is a very serious option. I was requested to have an ICD implanted as I could go to sleep at night and not wake up the next morning. This ICD could possibly save my life. Sixteen months later, without having the ICD go off, (thankful for that) my doc asked if I would like to participate in research and have my ICD replaced with a CRT-D. He says that even though only 20% work correctly in my condition that he recommends this. He seem to be excited about it and I immediately agreed to this.
     After the surgery was done to remove the ICD and implant the CRT-D, I went home for a few weeks to recoup. With the ICD, which possibly would help me if my heart stopped, I constantly was looking and hoping for something to help me feel good and do things without feeling tightness or pain in my chest. Before the CRT-D Implant I could not walk to the street to bring my garbage can. I would wake up in the morning and dressing was such an ordeal, putting on socks and shoes was very hard, leading to tightness in my chest and I would have to sit for minutes until the pain would go away. I could not cut grass, just was not able to do anything, just watch things go by the way side. I couldn't do any maintenance around the house and such.
     However, in these trials I had, after surgery recovery, gone into the hospital to have my CRT-D optimized. This was the thing that made the difference. I was connected to about four computers with lots of wires all over my body. One of these computers told what my optimization number should be and it was to be set at 120. Before this, CRT-Ds came in what is called in-box settings, meaning the settings came from the manufacturer. This is partly why only 20% were working.
     This optimization setting according to you heart problem and your body is the most amazing thing. It has given me my life back - unbelievable. I now can cut grass, take garbage out, do maintenance around the house, ride bikes, walk much much further than ever before, do many more different types of excercises. I am so excited about this. I had no idea I could ever get back to this point in life.
     Recently, I was asked to speak at a seminar of cardiologists, electrophysiologists, nurses and such on my success story. I did agree to do this for St. Jude Medical, who is the manufacturer of my CRT-D. It was very helpful to these people since they don't hear from patients very much and it was so beneficial for me as I talked with people in high places and they enlightened me on my CRT-D, how it was developed, how it works and why it works.
     I was so excited to find out what they are doing for the future of people like us. Believe me. the future for us is much brighter than the past. I thank so much my hospital, the staff doctors, nurses, specialty people and especially St. Jude Medical for working as a group together. They have giving me my life back. tunnyg@yahoo.com


James C's April 4 reply to Emmanuel D's April 1, 2007 - Hi, I had an echo about 7 months ago that revealed an EF of 35%. A few weeks later I had a cath and the EF was 66%. To try and resolve the discrepancy I had another echo a few weeks later and it showed 45%. The 35% to 45% difference between the echos might be due to the fact that I started Coreg in the interim even though I was only on it for about a month. There was no explanation for the 66% EF from the cath. I wasn't happy so I insisted on a MUGA, which is generally considered accurate for measuring EF. My MUGA EF was 51%.
     So the consensus was that my EF was somewhere around 45 to 50% and that it had improved considerably on Coreg. The cath was deemed the outlier. In the space of about 6 weeks I had my EF measured at 35%, 45%, 51% and 66% by 3 different modalities. The trend was in the right direction and it was at this point that I finally started to agree with Jon about not getting too obsessed with your EF number. ;-) jamesnyc360@yahoo.com


James C, April 4, 2007 - Hi,There have been a lot of questions about ICDs and BiV pacers lately. Here are a handful of links that people might find interesting. The first few cover microvolt T-Wave alternan testing for selection of ICD candidates: www.medscape.com/viewarticle/523232, and www.medscape.com/viewarticle/527551. The following is an hour-long video of a BiV device implantation. It's really impressive: www.or-live.com/Tufts-NEMC/1731/.
     There is a bunch of other amazing stuff on or-live.com that's worth watching. Regards, James. jamesnyc360@yahoo.com


Sharon S' April 4 reply to Winston L's April 2, 2007 - Hi Winston, Isn't she covered under Britain's National Health? I understood all that was paid for. My mom has dual citizenship, having lived her first 21 years in England and then marrying my dad, an American. She was there for a visit in 1991 and got glaucoma. She went into the hospital and they did some procedures - didn't cost her a cent. ericandmegansgrandma@yahoo.com


Mary C, April 5, 2007 - Hi Everyone, We never have an even break. As soon as one health problem gets settled, another pops up. I have the heart thing under control thanks to this site. I have the breast biopsy over - no cancer. Now I am having MRIS, MRAS and an ECG to check for lupus (blood test also), brain damage, seizures, TIA damage and so on. Isn't life interesting?
     I am glad I have God. He brings me peace in all the messy stuff. I am going to Sacramento to enjoy myself on Wednesday. They wanted to have me come in to get results but I refused to pay another co-pay so they are giving me results over the phone. If I have questions they can't answer, then I will go in. I thank all my prayers warriors in the Fresno area, and on this site. Have a nice Easter everyone. mhcarrs@aol.com


Tamara C, April 5, 2007 - Hi Jon, I would like to thank you so very much for this web site. It has really help me find a lot of information about my mother's CHF. I am very concerned about my mother. We had to call 911 about 2 weeks ago. She woke up that morning and her vision was blurred and she said she was seeing a yellowish outline of things. She also for days prior to this had loss of appetite, nausea, vomiting and was very weak. She had told me the night before she had loss of vision that she was dying and it would not be long. I tried to take her to the hospital but she refused.
     Anyway, once we got her to the hospital emergency room, her cardiologist said that her digoxin levels were dangerously high. He said that if I had not gotten her there when I did she probly would not have lived another 24 hours. The doctor also said that her CHF was at an aggressive stage and did not want her taking anymore of her Lanoxin so he has completely taken her off it. I was wondering if that is something to be concerned with. I would really like some input on this if anyone has any information.
     Thank you so much for your help. Tamara. sjcales@comcast.com


Jon's April 5 reply to Tamara C's April 5, 2007 - Hi Tamara, My first question to this doctor would be, "Why in blazes weren't you regularly monitoring her dig level with regular blood testing?!" It's considered mandatory to do so whenever prescribing digoxin because dig only works properly at certain blood levels.
     It should not affect her length of life to stop digoxin, but she may not feel as good as if she were taking the proper amount of it. Jon.


Brian M, April 5, 2007 - Hello everyone, I just recieved the fully favorable letter from SSD after 2 years waiting. Does anyone by chance know how long it takes to get your first check? A lot of bill collectors are waiting. What a long and winding road! pipefitter5972000@yahoo.com
 
Jon's note: Call your state's federal Senators and ask them to get it hurried up. It will work, trust me.


Mary C's April 5 reply to Winston's April 2, 2007 - Hi, Cherries have an enzyme that neutralizes uric acid. Punch in gout and cherries in the browser. Pick an education one.
     Jon is it the puppy, or you playing with the puppy? I am glad you have a great Rott to play with - very good dogs when brought up right. May this puppy bless you with joy and protection. MHCarrs@aol.com
 
Jon's note: Pictures of "Jack" (yeah, that's right, after mad Jack here) at chfpatients.com/jon_and_jack.jpg, chfpatients.com/jack1.jpg, and chfpatients.com/jack2.jpg.


Jerry B's April 5 reply to Brian M's April 5, 2007 - Hi Brian, When I was awarded SSD, my first check came five months after my date of disability. I was considered disabled late in July of 2005 and received my first check in February of 2006. I was approved in October of 2005. This was without anyone giving them a little nudge. cpapq4@rainierconnect.com


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005, 2006, 2007 Jon C.

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