Mary C's 1-17 reply to Jon's 1-15 new cardiologist on the way
Anne Y's 1-17 reply to Sue R's 1-15 my family's LVAD experience
Jennifer S 1-17 seek implanted device answers
Cheryl S 1-17 seek thoughts on device implant risks-vs-benefit
Bonnie B 1-17 really need CHF info
Mary C's 1-17 reply to Jon's 1-15 torsemide (Demadex) for heart failure
Jon's 1-17 reply to Mary C's 1-17 torsemide (Demadex) versus Lasix for heart failure
David W's 1-17 reply to Tonya C's 1-15 Coreg and prevacid experience
Jon 1-19 page updates
Nancy S' 1-19 reply to William J's 1-3 pacemaker implant experience
Linda K's 1-19 reply to Cheryl S' 1-17 stopping blood thinners experience
Linda K's 1-19 reply to Mary C's 1-17 Lasix versus Demadex experience
Robert N 1-19 vitamin E and CoQ10 seem to help me despite low EF
Debbie H 1-19 questions about Coreg pills
Jon's 1-19 reply to Debbie H's 1-19 Coreg dose and blood sugar
Lisa Z 1-19 seek experiences upgrading from 2-lead to BiV pacemaker
James N 1-19 seek health insurance options in Ohio, USA
Tony M 1-19 finally found a doctor I like
Giorg 1-19 Lasix versus Demadex
Ann L's 1-22 reply to Cheryl's 1-17 ICD decision experience
Jamie L's 1-22 reply to Mary C's 1-6 stretching exercises
Jack S 1-22 update
Linda K's 1-22 reply to Lisa Z's 1-19 pacemaker experience, biventricular pacer testing
Jon 1-22 prayer request, donations, page size
Nancy S 1-24 update, prayer request
Jon's 1-24 reply to Nancy S' 1-24 prayer requests, donations, thank you
Donna V 1-24 seek info and experiences with new shingles vaccine
Bev T's 1-24 reply to Sarah K's 1-3 seek experiences with transplant evaluation workup
Ben B 1-24 blood sugar note, anyone else, ideas?
Lisa Z's 1-24 reply to Linda K's 1-22 update, BiV pacer testing
Vanessa C 1-24 seek experiences with antidepressants and heart failure
Scott B's 1-24 reply to Robert M's 1-15 meds and heart failure
Karen K's 1-25 reply to Vanessa's 1-24 antidepressants, handling pain
Jon's 1-25 reply to Karen K's 1-25 handling pain
Georgia W's 1-25 reply to Vanessa's 1-24 antidepressants
Sharon L's 1-25 reply to Roger H's 1-9 why I stopped using Splenda
Karen S 1-25 get kidney workup before tests using dye
Sherry S 1-27 seek other peripartum cardiomyopathy experiences
Lori A's 1-27 reply to Karen K's 1-25 my pain management experience
Oden G 1-27 ICD may be unnecessary - what do I do?
Mary C's 1-27 reply to Vanessa C's 1-24 coping
Jon 1-30 update, posts, donations and software
Georgia W 1-30 kidney tests, this site
Karen K's 1-30 reply to Lori A's 1-27 pain management
Jack D 1-30 Splenda and sucralose
Mary C's January 17 reply to Jon's January 15, 2007 - Thanks Jon, I will push for it further. My PCP doesn't know Demadex well so he depends on Lasix. I am getting a new cardiologist in town, because the out of town CHF specialist wants someone to watch me closely if this happens again. He said he didn't want to fly me out and he didn't feel he could care for me the way I needed in a situation like this so I guess I will be breaking in a new cardiologist on0 1/25/07. I hope he is nice and listens. If not, you know what I will do. Fired! It is my money. Also pray he is good and a patient's dream for me, Jon. I want a kind, considerate, knowledgable cardiologist. Him being a Christian would be nice, also. Thank you for the encouragement. MHCARRS@aol.com
Anne Y's January 17 reply to Sue R's January 15, 2007 - Hi Sue, I am sorry for your loss, but have to agree with Jon. My husband lost his almost 7 year battle with CHF in October. He had a "destination therapy" LVAD. He did not qualify for transplant due to weight and pulmonary hypertension. His first implant was in August of 2004, which wore out 13 months later and he had no hesitancy about replacing it.
The decision to go forward with the LVAD in the first place was a very hard decision for him to make, but forgive the pun, he did it a second time in a heartbeat. The LVAD gave him the opportunity to see two of our sons get married, our daughter graduate from high school and college, and we took a wonderful memory-making family trip and most of all, the device gave us two more wonderful years we would not have had without the LVAD - including his last milestone, his 50th birthday. He passed away from sepsis from an infection he fought for over a year, but he did indeed fight this awful disease until the very end.
Jon, you are indeed a blessing for this site. When my husband was first diagnosed, we had an older doctor who had no bedside manner and no interest other than doing what had always been done. His first visit was, "Let's try this, this and this and if it doesn't work out we can always think about a transplant" and then he turned around and left. You gave us the info we needed and we quickly fired him and found a wonderful CHF specialist who was well versed in the latest therapies and trials.
Thank you for the information you provide to empower us all to be advocates in our care or the care of a loved one. God has indeed provided you as a witness to others. Anne. firstname.lastname@example.org
Jennifer S, January 17, 2007 - Hi, From what I have been reading, most people seem to lose weight after having an ICD put in. Is this from a better heart rate, being able to be more active, or what? I am curious. After mine, everyone (not the doctors) kept telling me I would have so much more energy. I really don't feel that much different. I have been exercising and all, but is the ability to exercise from the ICD, the meds, or just getting up and doing it? email@example.com
Jon's note: I'm assuming you are talking about a pacemaker or an ICD/pacemaker combination device, since an ICD won't make you feel any better.
Cheryl S, January 17, 2007 - Hi all, I have good news update and a tough risk-to-benefit decision to make. I just came back from Cleveland Clinic and just 4 weeks after increasing my beta-blocker dose again and switching to torsemide, I had a dysynchrony echo and my EF jumped from 18 to 25%, and my BNP went from 1650 down to 480.
I am scheduled for an ICD implant February 1st. The procedure itself does not seem that risky but I have never been off Coumadin or a substitute for more than a day in 8 years, and I cannot take a substitute for for 4 days after the procedure. I have to take a 4-hour car trip home with a history of 2 pulmonary embolisms. In addition, I now have a-fib, which puts me at risk for stroke without blood thinners.
I do not know how much of a risk I am for sudden cardiac death in comparison to these other risks so that I can make a reasonable decision. My new CHF doc says I need it, though there is a risk. My cardiologist says there may be value in waiting a month and repeating the echo before proceeding. Any thoughts or input out there? firstname.lastname@example.org
Bonnie B, January 17, 2007 - Hi all, I am a 25 year old mom of two kids, ages 3 and one. While pregnant with my son (the one year old) I started swelling and couldn't breathe. I was put in the hospital and found out I had pulmonary edema, hypertension and congestive heart failure. The day I had my son I was told my ejection fraction was 31% that day. Six months later I had an ejection fraction of 53%. Is this good? I am so confused on all of this.
I currently take Toprol-XL, Altace and furosemide. I was told to stop taking the furosemide and I have stopped taking it everyday but still take it about twice a week. A lot of things that happen are in my head, I know. I am a complete hypochondriac now. I'm always looking at my ankles to see if they are swollen again.
I need help. I need to know about this disease. Does it go away? Can it be cured? Will it kill me? Thank you so much for any information. email@example.com
Mary C's January 17 reply to Jon's January 15, 2007 - Hi Jon, So is the slowdown with Lasix because it doesn't penetrate or get broken down or absorbed in the edemic tissues of the adomen and intestines? Is this why Demadex works better, because it does? I read The Manual and I think this what it means. Thanks, Jon. firstname.lastname@example.org
Jon's January 17 reply to Mary C's January 17, 2007 - Hi Mary, Be sure to read all the edema page. Food intake radically reduces the effectiveness of Lasix but has no effect on torsemide. Also, torsemide is roughly 4 times as strong as furosemide. Torsemide also seems to improve outcome for CHFers, although no one is certain why. Specifically, yes, torsemide works on stomach wall fluid retention while Lasix is not properly absorbed and is thus less effective when your stomach wall has edema. The official treatment guidelines are specific on some of these issues - see http://www.onlinejcf.com/article/PIIS1071916405013783/fulltext?browse_volume=12&issue_key=TOC%40%40JOURNALS%40YJCAF%400012%400001&issue_preview=no&select1=no&select1=no&vol= (It may take awhile to load). Jon.
David W's January 17 reply to Tonya C's January 15, 2007 - Hi Tonya, I take Coreg and was on prevacid for a bleeding stomach ulcer. I now am still on coreg and take the generic version of prilosec, which is similar to prevacid. I had no reactions to the two in combination but we are all different. I cannot tolerate statins, which give me strange side effects.
I would tell my doc and maybe he could switch you to the generic prilosec, which is lots cheaper and seems to work just as well for me. Coreg and the generic prilosec are two meds I must take for life - I think they both help me tremendously. If you have further questions please e-mail me. email@example.com
Jon, January 19, 2007 - Hi everyone, The one-day lapse in posts was deliberate for a change. I updated the New Page, both Medspeak glossaries, the pacemaker page, and the meds list on my bio. The New Page info combined with the mailing sent out should help everyone considering a BiV pacemaker make an informed decision. Thank you for your patience.
People have e-mailed me wanting updates on donation levels. We are close to our monthly goal but not yet there. A huge thank you to all donors! Jon.
Nancy S' January 19 reply to William J's January 3, 2007 - Hi William, I don't know why the doctor wanted to build me up before the implant but that is what he did. I had been in the hospital not long before and kept having to go to the ER for IV fluid meds. I don't know if that had anything to do with it. It is probably just a difference in the way doctors differ in methods of treatment. Anyway, it worked for me but I sure was hoping every time I went, to be able to get it done. Now I rarely have fluid problems and feel so much better.
Sue, I'm also sorry for your loss. I hope your family and you can find comfort in one another and hopefully your faith in God. Nancy. firstname.lastname@example.org
Linda K's January 19 reply to Cheryl S' January 17, 2007 - Hi Cheryl, I am also on blood thinners for life because of one pulmonary embolism and one clot in my leg and a genetic clotting factor. I had an CRT-D implanted in June (that's an ICD with an extra lead for biventricular pacing) and it's a longer procedure than the ICD alone. I don't remember ever being off the Lovenox for more than a day, and I'd like to hear what the reasoning is for having you stop for so long. email@example.com
Linda K's January 19 reply to Mary C's January 17, 2007 - Hellow Mary, When I brought up the subject of Demadex at a recent visit, I thought I would have to make a case, but it turned out they were very easy about it. The explanation I got for the use of Lasix was, "We start out with the cheapest one." firstname.lastname@example.org
Jon's note: Demadex (torsemide) is now available as a generic drug.
Robert N, January 19, 2007 - Hi, It's been a long time since I have been here. I was diagnosed in 2000 with CHF. My EF has been at 15% since then. I had another echo 2 weeks ago and it was 15% again. I feel great and work full-time, having no problems breathing or sleeping. I am at the same dose of meds that I have been on since day one of diagnosis. I feel that the high dose of natural vitamin E and coenzyme Q-10 are what is making me feel so good all the time. I mean every day I feel good. I just want to let you know that just because your EF is low does not mean you have to limit yourself. Best of luck to everybody, and don't give up. email@example.com
Debbie H, January 19, 2007 - Hi all, I have a question about Coreg. Does it cause diabetes? Can it be cut in half? Thanks, Debbie. firstname.lastname@example.org
Jon's January 19 reply to Debbie H's January 19, 2007 - Hi Debbie, Coreg raises blood sugar and body fat so it can increase risk of developing diabetes. The actual Coreg pills can be snapped in half pretty well with just your fingers, but a lower dose does reduce heart benefits. Jon.
Lisa Z, January 19, 2007 - Hi, This is the latest update on my dad. He is getting a wee bit stronger and feeling a tad better. His CHF is under control for the time being. We went to the EP docs on Tuesday for his evaluation and he will be getting an upgrade to a biventricular pacemaker/ICD February 19th. He has had the 2-lead device since January of 2001.
Does anyone have any advice prior to this procedure? Has anyone gone from a 2-lead device to the biventricular? If so, how did it go, how long did it take, and did you feel better? The docs told my dad there is a 66% chance he could feel better, so we have to give it a shot! We live in the Pittsburgh area and the EP docs at Allegheny General Hospital are wonderful. email@example.com
James N, January 19, 2007 - Hi all, I need a guide to health insurance options for CHFers in Ohio. I'm age 38, have a BiV pacer, and was diagnosed about 4-1/2 years ago. Before the pacer, I was on a steep decline but since the pacer I've rebounded to near normal numbers (EF, LV size, etc).
Unfortunately, even though the numbers look good I still have the usual problems with good days and bad days, and such. I had insurance under my wife's policy until she was downsized and I've been on COBRA for 11 months with 7 more before it lapses. We've been unable to find work that includes health benefits and my EF is too high for me to ever qualify for Medicare.
Any resources to help navigate what rights I have, where I can get coverage with a pre-existing condition, what rights insurers have when dealing with pre-existing conditions, and so forth would be greatly appreciated. Thanks! firstname.lastname@example.org
Jon's note: Does Ohio have a high-risk state insurance pool? Early in the year is the best time to get into one.
Tony M, January 19, 2007 - Hi, After dumping my cardiologist of 4 years who is head of a university heart school that I was supposed to be honored to have take my case and failed me, I went shopping for another doctor and maybe I found her. She has a good bedside manner and sat in a chair and talked to me like a person can and should, not treat me like cattle in the stockyard. I met her today and one question I had in mind to ask right off the bat was if she was a CHF specialist.
As I began to explain a bit of myself and what I wanted, she said she has a son who's 8 and has had a transplant and is doing great. I didn't have to ask my question; I know she does and finally I have a doctor who lives and sees what it's like from a point of view that most of our doctors never see. It was a great first visit. She covered all the options we had, which I already knew but it was wonderful to hear a doctor explain what I had to learn on this web site on my own.
I told her about Jon's web site and the fact you could find all you need right here and if you think you're alone there is this message board to read and speak your mind. If you have questions, between Jon and the readers you will get answers.She seemed a bit surprised but then quickly said, "I know all you patients want answers and I am here to treat and help you." I couldn't believe my ears.
I think some doctors don't like for us to inform ourselves and hate to hear about the Internet but it's time doctors come off their throne and be real. She is a real person. Of course she didn't do the transplant and has to legally have another doctor treat her son but I think I have a doctor I can feel confident about.
My CPAP is doing its job finally - it kicked in a few days ago and for what it's worth, that's been very hard to get used to: A mask on your face with a hose dangling around the bedpost, but at least my time of misery is paying off. Take care and good health. Tony M. Ynotmyrick@yahoo.com
Giorg, January 19, 2007 - Hi all, About Lasix and Demadex: In my clinic the cardiologists switch from Lasix to Demadex only when Lasix does not have effect anymore. They push Lasix to the top (like 160 mg BID) and then if it is still not enough, they switch to Demadex. That's the strategy. It makes sense to me, because what counts it is not the dosage we take but how much our body absorbs so if a certain amount of Lasix seems not enough, it can be increased.
However, it is true that Demadex is food independet, so it is easier to manage but I do not want use an aid (the stronger Demadex) that could be useful when I would get in trouble with Lasix. email@example.com
Ann L's January 22 reply to Cheryl's January 17, 2007 - Hi, Not everyone who qualifies for a defibrillator inplant chooses that route. I did not and have never regretted the decision. Lots of things enter into the decision. I would think age and other medical problems would make a big difference. In my case I am 71 and am doing great. I have never even fainted in my entire life. I have no anxiety about the sudden death possibility.
I have an implanted port for prior chemo treatment that carries a catheter directly to my heart. The implant would travel down the opposite vein. Emotionally, I just balked - couldn't do it. It was one thing too many. The only person who would be really hurt by a sudden death is my husband, who said he had no problem with my decision. My cardiologist assured me that I did not have to go that route, only that I should have the opportunity to do so. firstname.lastname@example.org
Jamie L's January 22 reply to Mary C's January 6, 2007 - Hi Jon, I enjoyed your stretching exercises. My legs are a little stiff but I feel better. I wish I could go sled riding today like in the days before chf, but the stretches helped. Thanks again. email@example.com
Jack S, January 22, 2007 - Hi This is just an update. I just got out of a hospital with ulcerated divericula located on the duodenem. I was admitted as a heart patient because of my CHF and I fainted twice before an ambulance came. My cardiologist insisted I start Coreg again (previous bad experience in combination with other medications). Bingo! Although I'm only taking 3.125 mg twice a day, all dizzy and lightheaded spells as well as most of my arrhythmia are gone.
I've had problems keeping a CPAP mask tight enough to handle air pressure without making my nose sore. I could use it only 3 or 4 hours a night. A bandaid on the nose was suggested, but instead I used a one inch strip of D. Scholl's moleskin about 2-1/2 inches long. Bingo again! I slept 7-1/2 hours last night. Praise the Lord. firstname.lastname@example.org
Linda K's January 22 reply to Lisa Z's January 19, 2007 - Hi Lisa, I'm glad to hear your dad is feeling a bit better. I've got a CRT-D which was turned on just before Christmas, and at first I was dissapointed, but I just learned that the sinus infection I was fighting over the holidays seems to have survived round one, and I'm getting a battery of gastointestinal tests this week to determine why my digestion is so bad right now. So I guess maybe I'm doing okay, considering.
All I can say right now is that codiene is a wonder drug for me. I was able to make it through the night without waking up 5 or 6 times with coughing fits for the first time in a week. Has your dad been checked for mechanical dysynchrony? Read up on BiV pacing here, including the New Page entry on the subject. The latest thinking is that without dysynchrony, there is no CRT benefit and a standard EKG measurement can't tell you that. email@example.com
Jon, January 22, 2007 - Hi everyone, To all who pray around here, please send a few up for me, specifically that I will be able to physically maintain this web site. If it's not one thing, it's another. I'm having vision problems and had a case of "food poisoning" over the weekend. Thank you.
For those who asked, we are almost at goal for donations this month, but not quite yet. Our goals are modest. ;-)
I am taking reader requests quite seriously so am letting this page contain more posts before rolling some into The Archives. If anyone has problems with the page not loading right, it may be due to page size so if this happens to you, please, please let me know. Jon.
Nancy S, January 24, 2007 - Hi Jon, This is for you or if anyone else has experienced this, please step in. As I've said, I am scheduled on 02/23 to have back surgery. I haven't been able to do anything without pain and was told to stay off my feet as much as possible. I can't do any exercise at all. Now each time I get up to even go to the kitchen or bathroom, by the time I get settled again on my couch I can barely breathe. I feel like I've run a marathon. Do you think it is the effects of lying around so my body just got lazy or would lying around make my heart condition worsen?
Jon, I'm sorry you're having such a bad time and can certainly understand it being one thing after another and that you will get your physical health back. Even though we have learned to depend on you for your webmaster tools and all of the information and comfort, you've become a friend to us all and we'd rather have you than to work you down.
My husband and I have the same problems you and your wife are having with finances right now. I've been off work since 9/2007 and will be off probably at least another 3 months and am not getting paid. I was sure they would qualify me for catastrophe leave but no, they did not. I'm trying again since I am going to have surgery and have been told that it's almost a sure thing if surgery is involved. I sure hope so. My husband is self-employed and his business is seasonal and this is the worst off season we've ever had.
I would appreciate any prayers that y'all can send up for us as we need them all. Praise God for his love! Nancy. firstname.lastname@example.org
Jon's January 24 reply to Nancy S' January 24, 2007 - Hi Nancy, Deconditioning is one of our worst enemies, but there are times when it simply cannot be helped. Don't forget though that pain alone can cause the feelings and symptoms you describe - I know. I have switched from morphine because it started making me very depressed (chemically). I now take oxycontin and my depression is 80% gone. You have to find the pain relievers that work for you. I prefer time-released meds so my pain relief stays constant.
Frankly, doing this web site is one of the things keeping me motivated to take care of myself. That's one reason it's important for me to keep it up. Anyone here is welcome to request prayer. Please be as specific as possible in your prayer requests so people can pray for you effectively. I received 2 donations as soon as I brought the subject up so we are almost there for the month. Thank you all. My wife wants you all to know that our readers are simply the best!. Jon.
Donna V, January 24, 2007 - Hi everyone, Is anyone aware of contradictions with CHF and meds for getting the new shingles vaccine? I am sorry but I do not recall the medical name of the thing. I understand that an egg allergy is the only problem for "normal" people. I want this vaccine since the older I get, the idea of never having to face horrible shingles appeals to me. Thasnks, Donna V. email@example.com
Bev T's January 24 reply to Sarah K's January 3, 2007 - Hi Sarah, Congratulations on your new heart! I'm getting prepared to be put on the list in the next few weeks. I go for the team workup in two weeks. I'd like to correspond with you on your own experience. Would you (and any one else who's been there) contact me? Thanks, Bev. firstname.lastname@example.org
Ben B, January 24, 2007 - Hi all, I just noticed an interesting thing and wondered if anybody else has heard of something like this. Over the past several years, my fasting blood sugar has measured between 85 and 95. I have never been diagnosed with diabetes. However, I was looking nostalgically back at some of the medical records from the time of my diagnosis in 1997 with an EF of 10%, and I saw several fasting blood sugar readings above 100 (104, 103) and one of 110. Interestingly, all my blood work results were screwed up with lots of stuff out of normal limits at that time, such as lympohocytes and Co2.
I have done nothing to mitigate my blood sugar level, and wonder what's up? I fully expect to become diabetic at some point, since my father was and I have everything in the metabolic syndrome, but was wondering about this particular situation. email@example.com
Jon's note: My blood sugar has been very-high-normal since I started beta-blockers but has never gone up further.
Lisa Z's January 24 reply to Linda K's January 22, 2007 - Hello Linda, Thank you for your response. My husband and I were away last weekend and my dad actually felt good enough to take care of our two little dogs - a Westie and a Scottie (his grandchildren). They also pep him up from his depression a bit, which is great.
When he was evaluated at the EP doc's last week, they told us he is a good candidate for a BiV pacemaker. The doc said he has LBBB, and will perform another echo prior to the surgery. I will ask about the dysynchrony; I was not aware of that and have not heard his docs mention the word. I really appreciate the info and hope you are doing well. Take care. firstname.lastname@example.org
Vanessa C, January 24, 2007 - Hi, I am 49 years old and suffered CHF (5 times) on July 28th, 2007. I had a cardiac stent placed in my right main cardiac artery. On January 1, 2007 (happy new year) it failed and I had to be restented (thankfully no CHF or heart attack).
My question is: I lost my second son in October of 2004 and have been on an antidepressant since that time. I am diagnosed with PTSD and suffer from mutliple anxiety and panic attacks each day. However, my primary doctor wants me to tell the psychiatrist to wean me off the antidepressant I am on now. She feels it isn't doing much for me and it could be contributing to my heart problems. She said the psychiatrist can put me on something else.
This has me in a dither because I wasn't easy to prescribe for in the first place. Mostly all the popular antidepressants made my blood pressure go up or increased my anxiety and panic. Well, I went online to research what is the safest antidepressant after CHF and I read several articles where these drugs increase your risk of heart attacks.
Someone please help. I am sure others are on antidepressants. Can anyone share any information before I go through this trial and error thing with different antidepressants? Thanks so much for your time, Vanessa. email@example.com
Jon's note: I went through 4 others before finding that Celexa (citalopram) works for me taken at bedtime. No guarantees it will work for you, though.
Scott B's January 24 reply to Robert M's January 15, 2007 - Hi Robert, I am sorry to hear about your father. The doctor should be able to help you with the facts to base your decision on. Doctors often have good experience they can share, so you don't have to feel the burden of making this kind of decision all on your own.
As you may have gathered from this site, many CHFers take a few extra pills, and that is largely the extent of the treatment. I'm not sure this would impact the type of care your father would require. A diuretic for someone who has shortness of breath or swelling, can make a world of difference. Best of luck. Scott B. firstname.lastname@example.org
Karen K's January 25 reply to Vanessa's January 24, 2007 - Hello Vanessa, I just wanted to share my experiences with anti-anxiety and antidepressants. First of all, I've been told (and it makes complete sense) these meds need to be fine-tuned for each individual. I've been on 60 mg of Prozac for over 5 years and 20 mg of Librium to help with anxiety. I am curently considering asking my doctor if we can try decreasing the Librium as my anxiety levels are much lower, nearly nonexistent, in part due to the fact that I got a divorce which simplified my life in many ways.
Another reason I'd like to stop taking Librium is because I have severe scoliosis and osteoarthritis in my spine. I've been to several orthopedic doctors. The last was at the University of Iowa and they basically told me there wasn't much they can do for lower back pain. Interestingly, my pain is not always just in my lower back. Some days are tolerable while the pain is so great on other days I just feel as though I'm on fire I have such burning pain throughout my back and ribs.
I'm seeing some talk of pain medications being prescribed for those of us with CHF. What I would truly like is to be able to eliminate some of my pain. Not one doctor has offered medication as a solution. I had eye surgery several years ago and my CHF specialist seemed very concerned that I was having surgery, even though my cardiomyopathy is very well compensated. As far as I can tell, it's definitely my back and pain that are causing my life to be somewhat intolerable.
I would appreciate hearing from those of you who have been prescribed medication for pain and/or those of you who have had back surgery. I truly don't know where to go with this. Karen K. email@example.com
Jon's January 25 reply to Karen K's January 25, 2007 - Hi Karen, I have pain from fibromyalgia and peripheral neuropathy as well as bursitis remaining in one hip. A cortisone shot fixed the pain in one hip and in my lower back, shot into the major bursa of both hips.
I was taking time-released morphine called Avinza for the fibromyalgia but it was losing effectiveness and causing depression so my PCP switched me to Oxycontin and my depression is hugely better and my pain control very good. I take Lyrica for the peripheral neuropathy and neither my feet nor my lower legs hurt anymore. I take 600mg oxaprozin twice a day to relieve the arthritis and tendonitis pain in my fingers with good success.
The Lyrica and oxaprozin were prescribed by my rheumatologist after 2 orthopedic doctors just shook their heads. He thought they were nuts for not figuring these remedies out. I suggest seeing one. My PCP handles my fibromyalgia pain with the Oxycontin. He tries to keep me on time-released painkillers so my pain level doesn't spike up and down and this genuinely helps prevent addiction.
If you hurt, ask for relief - just don't ask for a specific medicine so you don't look like a druggie after a fix. My own doctors prescribed these meds when I complained of pain and we went to different meds until we found some with which we were both happy. Pain is like disrupted sleep - it will ruin your daily life and you should keep changing doctors until you find one who can grasp that basic fact. Depression is almost always worsened by chronic pain. Jon.
Georgia W's January 25 reply to Vanessa's January 24, 2007 - Hi, Vanessa I am a CHFer since I think 2003. That was my first hospitalization for it. I have had two cabg surgeries and I have 10 stents. I take Effexor and I keep Alprazolam around for emergencies. This has worked for me, but we are all so different when it comes to meds. Scary. Peace and love, Georgia. The Coreg continues to help my energy level. Thank God. firstname.lastname@example.org
Sharon L's January 25 reply to Roger H's January 9, 2007 - Hi Roger, why am I off Splenda? Well, I hate to be too graphic but it's due to too much bowel trouble. I take Metformin and that is well known to affect them and along with Splenda, it was just too much. I have noticed a difference, how do I put this delicately, in not needing to sprint to the bathroom in the middle of meetings, etc. I have really cut diet pop out of my diet. I allow myself as much sugar as I want as long as it fits in one teaspoon. Because I restrict my intake, I've taken to having a lemon at work that I slice and put in cold water, at one coffee, and an herbal tea at the other. I treat myself to a Starbucks once in awhile, but have only had one coffee so far this week. My doc says that Splenda has large molecules and has been extremely processed. I've added some time to the exercise bike to make up for having a couple of teaspoons of sugar, which my nutritionist says is okay as long as I keep track of it and maintain balance. email@example.com
Karen S, January 25, 2007 - Hi all, I want to share a recent experience which may prevent someone else from going through the nightmare my husband experienced this fall. He went into the hospital to have a left ventricular aneurysm repaired. That went very well and he was out of the hospital in 4 days.
The following day he had me call 911 because his abdominal pain was so bad he couldn't stand it. He was rehospitalized and the diagnosis was pancreatitis. They said this was from being on a heart-lung machine. One of the ways they treat this is not to feed you. A few days later, he was taken for a CT scan. He went into complete kidney failure. We were told that he was a little dehydrated and was given too much contrast dye and that's what caused the kidney failure. He was so bad off. He was delusional, had halucinations and was in terrible pain. He has rheumatoid arthritis and back problems too.
He had dialysis 4 times. When we were about to give up hope, his kidney function returned. All total, he was in the hospital about a month. Since then (end of October) he has had mood swings like you wouldn't believe, sometimes from minute to minute, sometimes day to day. He won't let me go to the doctor with him any more, although I did call his doctor and tell him about the mood swings.
Back to the point of this - make sure if you have a CT scan with contrast that they check your blood before the test. We never dreamed that such an ordeal could be caused from a CT scan. God bless you all. Thanks Jon. firstname.lastname@example.org
Jon's note: Kidney function tests are required before any test using dye. This is in my personal opinion, malpractice. The hospital probably has mandatory guidelines that were violated if no kidney function test was done first. My last CT scan was cancelled because my bloodwork showed borderline kidney dysfunction and the radiologist refused to even consider it.
Sherry S, January 27, 2007 - Hi all, I was diagnosed with peripartum cardiomyopathy after a twins pregnancy. I was admitted back into the ER two days after my delivery. I was discharged 3 days later with meds.
They told me to not have another child or I may not make it through another pregnancy. My concern is if I just had a single-child pregnancy if I'd still develop CHF. Does anyone else have the same circumstances? I'd really love to have another child. If I followed a low- or no-sodium diet and exercised for another pregnacy (I was on bed rest the last 2 months of my twins pregnancy), if there was any possibility that I may not develop the same problem with just one baby. Any suggestions? Sherry.email@example.com
Lori A's January 27 reply to Karen K's January 25, 2007 - Hi Karen and all, I have had two previous back surgeries. I have arthritis in my spine, fibromyalgia, and right now am dealing with a herniation of my L5-S1 disk. My only remaining disk material left there has squeezed out and they say that my nerve roots are being compressed.
I had to go to the emergency room for pain last month and they prescribed oxycontin, but the doctor wrote the prescription incorrectly so the drug store wouldn't fill it. In the meantime, I take Vicodin or Percocet depending on the level of pain.
On a daily basis though, I take Soma (700 mg), which is a muscle relaxer, at bedtime every night. I also take Lyrica. This combination seems to help me get some sleep. My rheumatologist has suggested that I take a different muscle relaxer during the day (Skelaxin - not sure of spelling) and sleeping tablets (Ambien) at night for awhile instead of the Soma. I take Lexapro (10mg) each day to fight depression, and Xanax as needed for anxiety.
The neurosurgeons have suggested that I have another major back operation but they are worried that the outcome of the surgery may not be worth the risk because of my heart and lungs. Right now, I'm staying away from the surgery idea unless I'm risking paralysis; then I'll have to make a decision. Until then, it's pain management. I'm going to have a series of steroid injections in my spine next month. I've done it a couple of times before and it helps for awhile. They're also considering implanting an electrical stimulator to try to help relieve some of my back pain.
I hope that some of this info might be helpful to you. Please feel free to send me an e-mail if you have any questions. Take care! firstname.lastname@example.org
Oden G, January 27, 2007 - Someone help! Last July, I went into our local hospital with pain below my right breast, in my rib cage. I was not dizzy. I did not see my cardiologist since I was told another one was taking his calls. The bottom line is that I was transferred to Dallas, and had an ICD implanted. My EF was 25 to 35%.
Within 2 weeks my EF was back to normal. My cardiologist was upset that this was done to me and told me the other cardiologist did not take calls for him. Now I am stuck with an ICD I may not need. I never fainted, blacked out, or anything like that, simply had a low EF rate for a few days. I was told by the doctor who implanted the device that he could remove it, but he has never removed one.
I need advice or imput. email@example.com
Mary C's January 27 reply to Vanessa C's January 24, 2007 - Hi, I too was also quite reluctant to go on an antidepressant. In my case they are used for their anti-anxiety effect. I have a rare condition called acute stress cardiomyopathy, or broken heart syndrome. Intense stress has given me 2 heart attacks so I have to de-stress with drugs. Once I started generic Celexa and I was having less physiological stress reactions. Since I would have breakthrough stress reactions with a pulse of 120 to 140 bpm, I needed, I needed a piggyback drug so now I am on generic Klonipen. So now my physiological reaction to extreme stress is under control.
I wouldn't give up on this drug unless I had a second opinion.Psychiatrists are also MDs and have a lot of "drug education." Go slow if you feel it is helping. Don't be afraid of the drugs - I was, and suffered 2 heart attackes for no reason. If I had taken antidepressants earlier I could have prevented some long-term problems. Be patient. It may take awhile to get the right mix between your body's chemicals and the drug's ingredients.
When you get the PTSD under control, you will know when to get off anti-stress drugs. I myself struggle with PTSD because of childhood abuse. It is now under control unless something triggers it. Once you know your triggers, it is a lot easier to live with this disorder. Don't give up.
PTSD is something you can live through with the right help. We are stronger than the disease. I will give you a hint on helping you get over it: Time will heal it. Don't try to go around it or pretend it's not real - go through it - as much as you can stand at the moment. Be good to yourself. Make yourself a safe place in your home surrounded by comforting things like have a spot with a Bible, a soft chair, worship music and fun movies. It is not easy but you can do it.
Much love to your heart Vanessa. I am sorry to hear about your son. I have two girls now. I lost my second baby so I know it hurts. God is the only thing that helped me through it
Jon, I'm sorry for the long note. Rest as much as you can, Jon. We need you on this planet. Both of you never give up. Mary. MHCarrs@aol.com
Jon, January 30, 2007 - Hi everybody, Well, for once I think a delay in posts was justified! <g> I have seen 3 doctors in 3 days. The meds changes alone have me reeling right now. My right eye has been swollen for 2 weeks, so I saw my PCP, who is baffled (very rare) and will send me to an eye expert. My sleep doctor is trying Mirapex for my restless legs syndrome that woke me up well over 50 times during my sleep study, then we'll work on a used CPAP for me. He is so into getting people well that he has a person in his office who does nothing but locate top-condition used CPAP machines for patients and helps them get the settings correct.
Unfortunately, I now know why my fingers and knees hurt; it's now officially rheumatoid arthritis, so I'm in for a long uphill battle. That's doubly true because he is certain I have another underlying condition that he has yet to nail down, possibly lupus.
Typing is becoming too difficult so I am buying a speech/typing software suite to let me continue all online work without all the typing. I could sure use some donations right now to buy the software so I can get used to it before my typing ability bites the dust completely. Right now, I can type but it hurts. My own doctor has used the software I'm going to buy and he thinks it will work well with a medical website author.
Please be patient and thank you for all your support. As my wife said yesterday, "How can one body be so screwed up?!" By the way, for those of you who suffer chronic pain, I have found oxycontin to be very effective. Jon.
Georgia W, January 30, 2007 - Hi, On the 29th, I am going to have a blood draw for the kidney. I have a stent down there. This is the first kidney check since I have been on Coreg and furosemide. Cross your fingers. Jon, you are a special angel. This site has helped me soooooooo much. Peace and love, Georgia W. firstname.lastname@example.org
Jon's note: Thanks like that are really a donation of sorts. I am very pleased the site and our readers have helped!
Karen K's January 30 reply to Lori A's January 27, 2007 - Hi Lori, Thanks to both you and Jon for your responses. I saw my PCP doctor on Friday and she has referred me to a pain clinic. That appointment will be on Wednesday. I'm not quite sure what will happen. Of course, she went through the usual exercise, water exercise, physical therapy scenario. She also did admit that I have bone rubbing against bone and very little space between some of the discs in my spine. Now isn't that wonderful?
I guess for now, it's a wait and see. I hate jumping from doctor to doctor. I have x-rays to take with me Wednesday. They were taken by an orthopedic surgeon about a year ago. He put me into physical therapy (which I still do on my own) but then said he doesn't work on spines. He referred me to the spine clinic at the University of Iowa but never sent them my x-rays. At the spine clinic I was told, "there isn't much we can do for lower back pain" and as far as I can recall they never even looked at my back. I am truly frustrated by all of this. I even went to a chiropractor but he wanted to see me 3 times a week at $34 each visit. My budget doesn't really allow for that. He also admitted early on he wasn't sure he could be of any help.
Thanks for your responses. Karen. email@example.com
Jon's note: Karen, for what it's worth, I had severe lower back pain and nerve blocks/cortisone shots helped a lot. Strangely, they were given in my hips by a rheumatologist after 2 orthpedic specialists said they couldn't help my. Don't give up!
Jack D, January 30, 2007 - Hi Sharon and everyone, I think there's too much nonsensical drivel about sucralose to let this post go unchallenged. About Splenda, here is some information so people won't be led astray. I differentiate between the commercial product Splenda and sucralose, which is the ingredient that sweetens
So when people complain about side effects from Splenda, they are really complaining about imagined side effects of one teaspoon of maltodextrin with a speck about the size of a pinhead of sucralose. That is what Splenda really is. If you were to buy sucralose equivalent to one pound of sugar, you would be purchasing 453.6 divided by 600 or 0.756 grams of sucralose. In American English, that's about 3/4 of one gram.
Those bags of Splenda which purport to be equal to 5 pounds of sugar contain 3.78 grams of sucralose or about 0.9 or 9/10s of one teaspoon. The comment that someone claims that Splenda is a "large molecule" is pretty much meaningless when included in the context of a doctor because medical doctors aren't generally chemists. However, sucralose (not Splenda) really is a large molecule and you can find some information about large molecules at www.generex.com/technology/large_molecule_drugs.asp. firstname.lastname@example.org
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.