Chuck's 8-2 reply to Roberta's 7-31 seek info on CPAP
Sandy's 8-2 reply to Cathleen's 7-31 similar experience, best wishes
Sandy 8-2 experience with CoQ10
Joy 8-2 thank you for information
Kim 8-2 is my doctor right about this?
Alexandra 8-2 update, had a bad day
Sharon 8-2 seek tips on flying with heart failure
Lisa's 8-2 reply to Mary Anne's 7-31 CHF doctor recommendation
Tom S' 8-2 reply to Donna H's 7-31 doctors charge too much
Carla's 8-2 reply to Greta's 7-30 edema in abdomen & hot weather
Harry's 8-2 reply to Mary Anne's 7-31 drug inserts
Tom S' 8-3 reply to Jon's 8-2 doctors' salaries & heart transplant
Jon's 8-3 reply to Tom S' 8-3 doctors' salaries & heart transplant
Greta 8-3 CPAP user dropout
Patricia P 8-3 retaining fluid in abdomen
Jon's 8-3 reply to Patricia P's 8-3 physical exam for edema in abdomen
Mary Anne's 8-3 reply to Alexandra's 8-2 good to hear
Alexandra's 8-3 reply to Sandy's 8-2 I am starting CoQ10 as well
Tom W's 8-3 reply to Chuck's 8-2 adjusting to CPAP use
Roger's 8-3 reply to Chuck's 8-2 adjusting to CPAP use
Roger's 8-3 reply to Charles' 7-30 doctors
Sandy's 8-3 reply to Kim's 8-2 don't give up!
Greta 8-3 with improvement, should doses be reduced?
Marly 8-3 seek info on supplements
Bill's 8-3 reply to Greta's 8-3 CPAP experience
Sandy's 8-3 reply to Alexandra's 8-3 yes, that's me
Sandy's 8-3 reply to Alexandra's 8-3 taking CoQ10 tip
Jon 8-4 Social Security doctor exam
Joanne 8-4 what should I watch for?
Jon's 8-4 reply to Joanne's 8-4 a few suggestions
Michelle 8-4 intro, seek advice
Anita C's 8-4 reply to Jon's 8-3 disagree on heart transplant
Jon's 8-4 reply to Anita C's 8-4 heart transplant
Karen K 8-4 buying CoQ10 at lower cost
Mary Anne 8-4 getting leg pain, cramps with Coreg dose rising
Tom S' 8-4 reply to Jon's 8-3 heart transplant and too-high costs
Patricia P's 8-4 reply to Jon's 8-4 doctors and exams
Carla's 8-4 reply to Karen K's 8-4 buying CoQ10 at lower cost
Dawn S 8-4 seek LVAD experiences
Tunny's 8-5 reply to Karen K's 8-4 thanks for CoQ10 sale tip
Annette S 8-5 seek CHF docs
Maggie R's 8-5 reply to Michelle's 8-4 exercise and travel experiences & more
Yvette's 8-5 reply to Greta's 8-3 CPAP experience
Yvette's 8-5 reply to Patricia's 8-3 retaining fluid
Sandra 8-5 SSD review, depression - questions
Jon's 8-5 reply to Sandra's 8-5 SSD review, depression, posts
Dave T 8-5 how can I reduce Coreg effects?
Jon's 8-5 reply to Dave T's 8-5 reducing Coreg effects
Joan 8-5 seek suggestions on getting to sleep
Jon's 8-5 reply to Joan's 8-5 getting to sleep
Mary Anne 8-5 spironolactone and potassium level
James 8-5 CPAP
Sandy's 8-6 reply to Jon's 8-4 SSD questions
Jon's 8-6 reply to Sandy's 8-6 SSD policies
Scott Brown's 8-6 reply to Tom S' 8-4 heart transplant issues
Donna H's 8-6 reply to Tom S' 8-4 heart transplant issues
Blake 8-6 heart transplant issues
Tunny 8-6 seek opinions on ICD implant
Jon's 8-6 reply to Tunny's 8-6 ICD implant
Samantha B 8-6 seek info on right heart cath
Sandy's 8-6 reply to Carla's 8-4 watch sodium content in supplements
Mary Anne 8-6 can I switch from Coreg to Toprol-XL?
Charles 8-6 seek CHF doc in northwestern Florida & more
Gene's 8-6 reply to James' 8-5 useful CPAP & biPAP tips
Sandy's 8-6 reply to Jon's 8-4 who pays for the site
Jon's 8-6 reply to Sandy's 8-6 paying for the site
Tom S' 8-7 reply to Donna H's 8-6 transplant issues
Ben B's 8-7 reply to Jon's 8-6 disability reviews
Jon's 8-7 reply to Ben B's 8-7 disability reviews
Pamela 8-7 seek ICD replacement experiences
Steve 8-7 seek biventricular pacemaker experiences
Donna H's 8-7 reply to Pamela's 8-7 device replacement experience
Brenda H 8-7 questions on oxygen levels & sleep study
Gatha S 8-9 CHF and diabetes clinical trial - anyone?
Pamela's 8-9 reply to Donna H's 8-7 seek device re-implant experiences
Jeff A 8-9 ICD/pacemaker experience
Michelle's 8-9 reply to Maggie's 8-5 swimming, PH pressures & more
Jon's 8-9 reply to Michelle's 8-9 pulmonary pressures
Gene 8-9 seek Denver, Colorado CHF doctor
Roger 8-9 finding low sodium at restaurants
Carla 8-9 what about heart burn and meds?
Tom Campbell 8-9 am I crazy not to stick with Coreg?
Jon 8-9 seek deal on computer operating system
Sandy's 8-9 reply to Brenda H's 8-7 sleep study & oxygen levels
Sandy's 8-9 reply to Roger's 8-9 eating out & sodium
Marly's 8-9 reply to Pamela's 8-9 device implant experience
Paul D's 8-10 reply to Roger's 8-9 eating out and sodium intake
Mary Anne's 8-10 reply to Tom Campbell's 8-9 taking Coreg experience
Alexandra's 8-10 reply to Jeff A's 8-9 we're all different
Donna H's 8-10 reply to Roger's 8-9 eating out and sodium intake
Charles 8-10 eating out and sodium intake
Michelle 8-10 good CPAP experience for 5 years now
Roger 8-10 update, exercise, test
Amy 8-10 why a slow heart rate?
Roger's 8-11 reply to Michelle's 8-10 CPAP, BiPap experience
Roger's 8-11 reply to Donna H's 8-10 eating out
Jeff Anderson's 8-11 reply to Alexandra's 8-10 coping, emotions, meds
Myrtle C 8-11 potassium levels, genetic testing
Dale E 8-11 seek info on a-fib and pacerone
Joy 8-11 why do beta-blockers worsen depression?
James 8-12 update on my health
Doris 8-12 seek heart doc in Peoria, Illinois
Darlene 8-12 seek ideas on Aldactone report
Jon's 8-12 reply to Darlene's 8-12 possibilities
Sherri's 8-12 reply to Roger's 8-9 low sodium diet and eating out
Lori 8-12 seek Batista Procedure info
Gene's 8-12 reply to Myrtle C's 8-11 genetic testing for meds
Jon's 8-12 reply to Gene's 8-12 genetic testing for meds
Greta 8-13 Dr. Silver's book & more
Joanne R's 8-13 reply to Darlene's 8-12 television health shows
Myrtle C's 8-13 reply to Gene's 8-12 thank you
Giorg 8-13 seek experiences with running for exercise
David Wilson's 8-13 reply to Darlene's 8-12 spironolactone experience
Charles 8-13 does anyone use Resperate?
Roger Hughs' 8-13 reply to Doris' 8-12 doctor recommendation
Joy 8-13 should I not take my meds before doc visit?
Roger's 8-13 reply to Darlene's 8-12 getting lots of blood tests
Roger's 8-13 reply to Sherri's 8-12 thanks to all
Renee 8-13 how do you find a reliable doctor?
Bill's 8-13 reply to Darlene's 8-12 spironolactone experience
Jon 8-13 thanks to all
Jon 8-14 I really need your help with msn.com
Alexandra's 8-14 reply to Jeff Anderson's 8-11 life style, heart failure & and more
Valerie R 8-14 it's nice to be back
Sandy's 8-14 reply to James' 8-12 congratulations
Sandy 8-14 riding out the storm
Susan's 8-14 reply to David Wilson's 8-13 what about low potassium?
Chuck's August 2 reply to Roberta's July 31, 2004 - Hi, I am a long-time listener, first time caller. I'm curious if anyone had bad reactions to a CPAP machine? I was supposed to be part of a sleep study while I was hospitalized for CHF in May, but I couldn't take the mask. I wore a full face mask for 2 nights and got absolutely no sleep, as in being awake for 48 hours kind of no sleep. Having to force each breath out required too much concentration for me to sleep. They tried me on a different mask that just fit my nose and although I got some sleep, I appearently breathed through my mouth all night. I was uncomfortably dry in the morning. So I refused the CPAP from there on out. Is that nose mask I had the nasal pillows or are they something else? firstname.lastname@example.org
Sandy's August 2 reply to Cathleen's July 31, 2004 - Hi, I'm so proud of you for taking such good care and interest in your mom's progress. I also have been through almost the exact things your mom has. I was diagnosed in January, went to SSI in February and got my "gold card" in July of this year. My EF started at 12% and now is at 25% so thankfully I am one of the lucky ones. I'm feeling so much better! Here's wishing you and your mom the best of health. email@example.com
Sandy, August 2, 2004 - Hi, I said I'd come back in a month or so to tell how I'm doing on CoQ10. You know, the stuff works! I have more energy than I've had in a year. I've been taking a 100mg tablet each day for 2 months now and although it's not cheap (about 84¢ a day) I use the Country Life CoQ10 Mega-Q-Gel brand. My best to everyone! firstname.lastname@example.org
Joy, August 2, 2004 - Jon, Thank you. I am so very glad I have found you and the group. No medical person has yet told me anything of consequence except for the CHF tag with ventricular something in brackets. I tell them all about the interaction of various meds with the SSRIs in my past and yet they seem not to listen. Depression as a side effect of beta-blockers is actually mentioned and thank you for your comments.
I am wending my way through the public health system here in New Zealand. I have no insurance and limited money so full diagnosis can be very slow. I have started on a diuretic called diurin, presumably a furosemide generic. I take the ACE inhibitor cilazapril but I am refusing to start the Betaloc (metaprolol). I feel very unwell and quite bewildered. Bless you all. Thank you. email@example.com
Jon's note: Be sure to read The Manual too.
Kim, August 2, 2004 - Hi, I just need to vent. I have been having fluid in my abdomen like many of you are talking about - not in my ankles. I too, hate having my ankles squeezed. Last week I began vomiting and having SOB and very low energy. I saw my PCP because I couldn't get in to see my CHF doc and I was scared.
I was diagnosed last October after having the same feelings for several weeks and I thought that it was the flu. My PCP made me feel terrible, like I was a hypochondriac. She felt my ankles and began asking if I was depressed because that could cause my symptoms. She said that it is not possible for me to be in CHF because my EF is 40. Is she correct? I want to find a new doc. Thanks, Kim. firstname.lastname@example.org
Jon's note: No. As far as CHF goes, your PCP is an idiot and totally wrong.
Alexandra, August 2, 2004 - Hi, I haven't posted in a long time. I have changed my e-mail and haven't even started my new address book yet (lazy). I have been feeling pretty well with the exception of this past weekend. I guess they all can't be good days. My CHF doc is slowly increasing my Coreg over the next year. I am on 6.25mg twice a day now. He wants to hit 25mg twice a day but says not everyone can handle that. I can certainly see why. This drug doesn't make my depression any worse, but the dizziness, fatigue and all around lousy feeling it gives me is just too much to bear sometimes. This weekend was one of those times.
I am always so optimistic and upbeat and try to have a good attitude, but everything just got to me this time. I spent most of the weekend sick and crying. I just kept thinking, "I am sick of being sick." I couldn't even go to my son's friend's birthday party. I am 34 and I know I will be doing this for the rest of my life. I will be optimistic 95% of the time for my 3 year old son, but I guess after 7 months of acceptance, I finally broke for a bit. I won't beat myself up over it, we can't do that. I guess a once a year fit is okay.
I hope this week will be better. I have my phone pacemaker check tomorrow. It is always good. I have yet to get any bad news. I have even been taken off Lasix and potassium because my doc says I am doing so well. Why do I feel so bad then? I'm going to call him tomorrow. He is great, he always calls back the same day. He called from the airport once while getting on a plane.
My new insurance doesn't kick in until about a month from now. He doesn't charge me until I have it. I know he is a doctor that is truly in it for the medicine and people. Oh well, I have rambled enough. I hope eveyone is doing well and I will update my address book so I can e-mail more often. Have a great week everyone! email@example.com
Sharon, August 2, 2004 - Hi all, I haven't posted for awhile but read everyone's comments regularly. I'm still trying to get a grip on this illness myself and am seeking information about taking my first short-haul flight since diagnosis in November of 2003. Any advice or suggestions on prevention of deep vein thrombosis and extreme fatigue would be greatly appreciated. Many thanks and well wishes to you all. firstname.lastname@example.org
Lisa's August 2 reply to Mary Anne's July 31, 2004 - Hello Mary Anne, I live near Evans City and my father lives in Penn Township, Butler County. He has DCM, an ICD, type 2 diabetes, class 2 CHF, and high blood pressure. I have posted here many times. My father's cardiologist is not listed as a CHF specialist per se but I believe he qualifies. His practice sees many, many CHF patients. His name is Dr. Samer Azouz and he has an office at AGH and also one in Butler. We have used both offices.
I cannot say how much I think of this doctor. He is probably in his late 30s and he is Lebanese. His work ethic is amazing. Back in 2001, my dad was in Butler Hospital and in cardiac arrest twice and Dr. Azouz stayed at the hospital the entire night with me and my mom in the CCU. He recommended a transfer to AGH and that we have the ICD implanted. My dad has since been in the hospital many times for CHF, prostate problems, once for a stroke, and numerous times for nasty bladder and kidney yeast infections. Every time Dr. Azouz has been available to aid in my father's recovery. He always answers all our questions, calls my father to check on him periodically between visits (how many doctors do that?) and has even returned my calls personally.
However, he does not tread lightly: My dad requires some stern lectures and Dr. A makes no bones about giving them! He also assists us with samples of medications because my parents' income is so limited, and the entire team of physicians in their practice behave in the same manner. We have seem them all at one time or another. I believe he saved and has extended my father's life many times in conjunction with my dad's PCP, Dr. Nallathambi.
Dr. Azouz' office in Butler is (724) 282-8910. It is called Cardiology Associates. At the moment, they operate out of the Nixon/Sarver building at Butler Memorial. They were in the Morgan Management Building before it burned and will soon be moving to the Eastland Plaza. His Pittsburgh office at AGH is 490 East North Ave., Suite 307, Pittsburgh, PA., 15212, phone: (412) 321-0680. Best of luck to you. I hope this helps. email@example.com
Tom S' August 2 reply to Donna H's July 31, 2004 - Hi, So what basically amounts to a glorified plumber can make millions off the tragedy and sickness of another. No wonder doctors are slipping on the admiration scale. If they keep this up they can fall somewhere between a used car salesman and a trial lawyer. firstname.lastname@example.org
Jon's note: I probably should point out that the amount mentioned is not nearly all for the doctor - it's for the whole initial transplant process.
Carla's August 2 reply to Greta's July 30, 2004 - Hi, I too have that same feeling, like I'm full around the middle. However, my doc says I'm doing great and all my bloodwork shows normal levels with no signs of fluid retention. I have noticed that on days when the humidity is high, which is often in central Texas, I feel worse. It can be 100 degrees, but if it's low humidity, I feel great. At 80 degrees with high humidity I'm a slug. email@example.com
Harry's August 2 reply to Mary Anne's July 31, 2004 - Hi, The FDA requires that the inserts be made available. "A Patient Package Insert (PPI) contains information to aid a patient's understanding of how to safely use a drug product. It is part of the FDA-approved labeling." Ask the doctor or pharmacist for it. firstname.lastname@example.org
Tom S' August 3 reply to Jon's August 2, 2004 - Hi, I grew up in doctor's row and worked in surgery where they boasted about how much money they were making and getting a laugh out of it on occasion. I just think the whole transplant process is over the top and that's one of the reasons I opted out of the transplant program 9 years ago. Gee, if I had my very expensive transplant 8 years ago I would have added at least 5 years of life to my life. Oops, I think I did that quite well without the Aztec heart ritual. <g> email@example.com
Jon's August 3 reply to Tom S' August 3, 2004 - Hi Tom, I refused transplant also but I guess I had different reasons for making that decision. Many people who would otherwise be dead are now alive and some are doing quite well thanks to a donor heart. I still think heart transplant is an act of desperation and should be treated as such, but when you're desperate, it's nice to have the option available!
As for doctors' fees, my doctor earns his very large salary so I don't resent that he makes it. If some people boast and laugh about how much money they make, why should I care? Jon.
Greta, August 3, 2004 - Hi everybody, Well, I am 10 days into using my CPAP. I don't know if this is going to work out or not. Until Sunday night I was not sleeping worth a plug nickle. So Sunday night I slept without it. I found a Breathe-Right strip in the med cabinet and used it. I had the first good night's sleep in a week. I found out my humidifier was not working right so I got that fixed and it might make a difference so I will try the CPAP for one more week.
If the ability to get a night's sleep does not improve, I am going to rethink keeping this machine. Also, the head gear gives me a headache but if I loosen it, it won't stay on and moves around. I may be the only CPAP user drop-out. Wouldn't it be funny if all I needed in the first place were Breathe-Right strips? Thanks for listening. Blessings, Greta. firstname.lastname@example.org
Patricia P, August 3, 2004 - Hi All, I haven't posted in awhile. Concerning fluid in the abdomen, I just wanted to say that the last time I was in Club Med the doctor there had me lie on my back and he pressed gently on my stomach while looking at my neck. When I asked what he was looking for, he said he was looking to see if I had fluid in my abdomen. I don't know how this works. Any ideas on this, Jon? Patricia. email@example.com
Jon's August 3 reply to Patricia P's August 3, 2004 - Hi, Feeling and tapping the liver (in your upper right abdominal area) is mandatory in a CHF exam to check for upper body edema. Checking the neck veins for distension (being raised more than usual) is another mandatory check for edema and abnormal heart pressures in a CHF physical exam. Also see http://info.chfpatients.com/Physical_Exam_in_CHF_Patients.txt, http://my.webmd.com/hw/heart_disease/hw31019.asp, www.northmemorial.com/healthencyclopedia/content/185.asp and http://126.96.36.199/N/n.web?EP=N&URL=/MCGI/SEND1%5EWEBUTLTY(200,446095)/1533146624. The abdomen is also physically examined for abnormal aortic pulsing in CHFers. I would like to point out that the Guidelines for assessing heart failure patients do not include a thorough outline of appropriate physical exam necessities - a critical flaw in the official guidelines. Jon.
Mary Anne's August 3 reply to Alexandra's August 2, 2004 - Hi, I had the dizziness when I started Coreg at 3.125mg twice a day. I then went up to 6.25mg in a couple of weeks and didn't have any side effects! Go figure. It is good that you are doing so well that you can go off the Lasix and potassium. Congratulations. We all need to hear that things can and do get better sometimes. firstname.lastname@example.org
Alexandra's August 3 reply to Sandy's August 2, 2004 - Hi Sandy, I just started CoQ10 today, but only once a day to start out. I hope it has the same effect on me that you got. That's great! I'm glad to hear it's working well. Good luck and how is Clearwater? I hope I have the right Sandy - meds mess with your memory, you know. <lol> We are coming to Florida in November and I cannot wait! It will be just a vacation though. A little longer and I will be there for good! email@example.com
Tom W's August 3 reply to Chuck's August 2, 2004 - Hi Chuck, I have used a full face CPAP mask for several years. As with any new or different experience, it takes awhile to become adjusted to it. I forcibly removed mine several times each night for quite awhile. Like you, I got no sleep during testing. There is no way they could accurately produce accurate measurements. The technicians offered options to the full-face face mask, which all required you to breathe through your nose. They offered to "teach" me to breathe through my nose. I am a lifelong mouth breather and am much too old and stubborn to try to change!
It will always be inconvenient to sleep connected to a hose which has to be adjusted each time you turn over. However, now I rarely rip it off and find that I do enjoy having the forced air on my face. As with CHF, to be successful with a CPAP there must acceptance and then the determination to make those changes which offer the greatest chance to improve our quality of life.
The dry mouth is common with mouth breathers. Place a glass of water on the night stand. Good luck, Tom W from Eau Gallie, Florida. firstname.lastname@example.org
Roger's August 3 reply to Chuck's August 2, 2004 - Hi, I've been on a CPAP machine for a few years now and I think the only bad experience I had was getting used to wearing it. I have the nose mask. I have to wear a chin strap to keep my mouth shut, but other than that, not much trouble. I do wake up sometimes without the mask - I take it off and go back to sleep and don't remember doing it!
I can tell if I don't wear it much. Yesterday I was driving on vacation and got very sleepy, and behind the wheel that is a big mistake! I started to drift. I pulled to the side of the road and let my wife drive! email@example.com
Roger's August 3 reply to Charles' July 30, 2004 - Hi, I am sorry to hear of your problems with doctors. It sounds like it is a common thing with us. I feel that my doctors (PCP and cardiologist) are great and kind of work together. All the blood tests I get are sent to both offices so they know where I stand as far as that goes. They are also very up front and tell it like it is and I like that kind, even if they tell you something you don't like. firstname.lastname@example.org
Sandy's August 3 reply to Kim's August 2, 2004 - Hi Kim, Please don't stop at the first doctor or the second. I am now on my fourth doctor and is he a blessing?! No matter what I say, he listens and tries to help me find a reason or a treatment for my latest dilemma, and we CHFers have many!
Don't stop looking for a new doctor and don't believe everything they tell you! My first told me to "go home and die." I've only been reading this site since March of 2004 and I have learned more here, thanks to Jon, than the doctors can tell us. We have to help each other. Good luck to you! email@example.com
Greta, August 3, 2004 - Hi Jon, This question is for you. If your EF goes up, say around 40 to 50%, and relying on all your studying on the subject, would the beta-blocker dose need to be reduced? I asked this because I think beta-blockers help regulate the heart beat and if the EF goes up, would something to slow and regulate heart beat still be needed? Am I out in left field here? Am I referring to an ACE inhibitor and just don't know it? Do you have any input on the subject? Thanks. Blessings, Greta. firstname.lastname@example.org
Jon's note: Current thinking says the short answer is no, the dose should not be reduced. I haven't reduced mine on either ACE inhibitor or beta-blocker.
Marly, August 3, 2004 - Hi, I've been on 30mg CoQ10 3 times a day along with 500mg L-carnitine twice a day and 500mg taurine daily. I feel great with this dosage. Lately, I was being asked by an alternative medicine practitioner to try silica hydride as cellular fuel and mangosteen xanthones as antioxidant. Has anybody experience with these nutriceuticals? email@example.com
Bill's August 3 reply to Greta's August 3, 2004 - Hi, I've been using CPAP for about a month and I wouldn't be without it now. I have the full face mask because I am a mouth breather. At first it felt funny but now it makes my nose sore. I think I've messed with the mask too much, but between a sore nose and falling asleep at the wheel, a sore nose ain't so bad. Try to stick with it, it's worth it. firstname.lastname@example.org
Sandy's August 3 reply to Alexandra's August 3, 2004 - Hi Alexandra, It's nice to hear from you. Yes, I'm the Sandy in Clearwater. It's good to know you have started CoQ10. Do your best to take it every day and let me know how it works for you! I also have been taking flax and fish borage oil. It's full of omega 3, 6 and 9 fats. I'm not sure if that is helping also but at this stage of the game I'll try almost anything. It's good to hear you're coming for vacation. E-mail me and let me know how you're doing! Good luck to you. email@example.com
Sandy's August 3 reply to Alexandra's August 3, 2004 - Hi, Just one more thing about CoQ10. I read somewhere that if you take a little bit of fatty food like peanut butter with the tablet, it helps it work better in your system so I started that about 2 weeks ago. firstname.lastname@example.org
Jon's note: This is why gelcaps are more expensive - it's just oily fat to make the CoQ10 work better than in hard tablets. Chew the tablets as well as taking them with some fat for better results.
Jon, August 4, 2004 - Hi everyone, it's ironic that we were discussing the physical exam for heart failure patients here lately. I was examined yesterday by a doctor for my Social Security Disability review and it was pathetic. There was no pulse pressure calculated, blood pressure was only taken on one arm, there was no Valsalva maneuver, and he didn't even "squeeze my ankles!" In fact, I was the only patient in the place for the hour I was there - 50 minutes of waiting, 5 minutes of exam, and 5 minutes trying to get him to write down my meds correctly even though I brought them in their original prescription bottles! He didn't even believe me when I told him who my cardiologist was because he thought it was somebody else. I guess patients are too dumb to know who their own doctors are. SSA must just be looking for cheap doctors. This guy didn't know that a Vo2max test relates to prognosis in CHF, what a normal Vo2max result should be, or much of anything else that I could tell. Yummy, ain't it? <g> Jon.
Joanne, August 4, 2004 - Hi Everyone, I am getting ready for the girls to go back to school. I meet with the principle of Chelsie's school tomorrow to make sure her 504 plan is in place. The plan is supposed to ensure that the school follows the recommendations set forth by Chelsie's cardiologist. Last year we had a couple of problems with teachers not wanting to let her go to the bathroom. With the Lasix, being able to use the restroom as needed is a must.
She seems to be a little more tired the last couple of days. She does not look like she is retaining any fluid. What do I need to be watching for? Her eyes do not look puffy nor do her feet or hands. Is just a normal part of her medical condition? She said she is just tired but she is more tired than she has been in quite a while. email@example.com
Jon's August 4 reply to Joanne's August 4, 2004 - Hi Joanne, I watch myself for shortness of breath. One clue for me is running out of breath while speaking, needing to take a breath in the middle of sentences. Also, getting lightheaded hits me before edema, especially when standing up or when straightening up after bending over or squatting. If weakness accompanies my fatigue, I know I am decompensating. I'm not talking about endurance but inability to exert the same muscular force as usual during short physical activities like putting away dishwasher dishes. This makes me want to sit a lot. Jon.
Michelle, August 4, 2004 - Hi, I am a newcomer to this. I have been diagnosed with heart failure and pulmonary hypertension. I'd had really bad sleep apnea for about 10 years before getting it treated. Now it is being treated and I can actually sleep for about 4 to 5 hours at night! I am also obese and have diabetes. I am 44 years old and up until about 8 months ago have never felt old.
Last summer I was working out at Curves every day and although I was still obese, I felt real well. Then blammo, I started getting winded walking down the hall to the bathroom and things like that. Well, anyway in May I had some chest pain that didn't go away and went to urgent care. I have always had PVCs on my EKG so I wasn't worried and I told them about it but they still sent me to the hospital. They did a lung scan and ended up doing a cath and found that I have left side damage and pulmonary hypertension. My numbers are 54/25 for the PH (Jon's note - I don't know what these numbers represent). I would like to find out my EF. Do I just ask my doctor? He is a CHF specialist and I feel very comfortable with him. He has started me on Coreg and I have been on ACE inhibitors because of my diabetes so they upped it some.
I am pretty tired all the time and I have been trying to do three 20-minute walks per day but I would be wiped out after them. It would take me half an hour to be able to breathe normally again after. The doctor suggests that I walk a lot slower and maybe less long. It is very frustrating to me because of how well I was doing at Curves' gym last summer. I feel like a big lump and wonder if you could suggest anything else I can do for excersise that won't make things worse. I will never get this weight off if I can't exercise.
I am so glad I found this site and am thankful to all of you. I have been off work for 18 months on workers compensation and have had many surgeries on my hands and thumbs. I have one last surgery to endure and then I thought I was going back to work but I don't know now. Any answers would be greatly appreciated and I will keep all of you in my thoughts. Thank you so much for being there. firstname.lastname@example.org
Anita C's August 4 reply to Jon's August 3, 2004 - Hi Jon, I've read your web site for several years and realize you have very strong opinions. I admire your knowledge and all the great information you provide on your web site. I am, however, disappointed and somewhat frustrated in the insights you share about heart transplant. I especially am a little offended about your comment that a transplant is an act of desperation. Four years ago I was referred to a transplant team for evaluation because of severe CHF and cardiomyopathy. I was given all the information and made an informed decision on my own.
I felt that I was being given a window of opportunity for a better quality of life than I had with the CHF. I was not desperate. I was in good shape except for my heart. I opted to be listed and within 6 months received a donor heart. I have never looked back. I currently take very little medication, do what I want to do, and breathe like I could never breathe before.
I just recently had a cousin who opted for transplant also but she made her decision in desperation. She waited too long to be listed and her other organs failed her after transplant. We buried her 2 weeks ago. I am certainly not advocating transplant for everyone with heart failure, but I'm also saying don't wait until you are desperate before considering it. Keep up the good work. Anita Cox. email@example.com
Jon's August 4 reply to Anita C's August 4, 2004 - Hi Anita, I think it's great that you are doing so well! I base my comments on a wide range of experiences, not one or a few. I do know the numbers and the general realities. Your experience is not the rule. I said, "Many people who would otherwise be dead are now alive and some are doing quite well thanks to a donor heart." However, most heart recipients stay on heavy medication with strong side effects, suffer cancers and infections, and don't do nearly as well as you have done.
The reason is simple: Unlike kidneys and livers, hearts only survive 4 to 6 hours outside the body, so close matching between donor and recipient is impossible. It's a crap shoot. Until the heart arrives - at which point, you are already in the operating room and the decision is done - no one knows how much anti-rejection medication will be necessary for you to live with your donor heart.
If you get a good match, as you obviously did, you do well and think very highly of heart transplant. If you don't get a close match, you take heavy meds, have more (and more serious) rejection episodes, have side effects, infections, and considerable other nastiness as part of the rest of your life.
One reason you don't hear from the people who suffer terribly after transplant is that often they are too sick to tell their story or they are dead. So we only hear from recipients who got relatively close matches between donor heart and themselves.
If you made an informed decision, you know it is true that only the most quick and basic matching would be done, leaving your anti-rejection therapy unknown until you received your donor heart. In my view, that makes heart transplant an act of desperation. I had an EF of 13% with a Vo2max of 13.5 when I refused transplant and now my EF is 50% and my Vo2max is 20. So maybe you jumped the gun, or maybe you didn't. No one can foretell the future.
For these reasons, I consider heart transplant an act of last resort. Most cardiologists agree with that and more agree every day as heart failure treatment and prognosis steadily improve. Desperate decisions don't have to be bad decisions - they are just decisions taken when other choices vanish. At that point, I am all for it.
I can understand your disappointment about my comments, but not your taking offense. This isn't personal. I believe that my pages on heart transplant are some of the most factual, straightforward, and informative anywhere on the web. Do you disagree? I am very open to correcting any mistakes on my heart transplant pages! Jon.
Karen K, August 4, 2004 - Hi, I'm seeing a number of posts from folks just starting to use CoQ10. I've used it for many years having learned of it on Jon's site. I just wanted to pass on that periodically (seems to be monthly) Walgreens has a two-for-one sale on their supplements. I think most Walgreens have the same sales. I live in Iowa and through next Saturday can get two bottles of CoQ10 for $19.99. I take 200mg a day. Karen. firstname.lastname@example.org
Mary Anne, August 4, 2004 - Hi, I know I've seen this on this site before, but has anyone experienced leg pains and calf cramping while going up on Coreg? Or could it be the amiodarone? I have been on 200mg a day since March 28th. Great site, God bless you all. email@example.com
Tom S' August 4 reply to Jon's August 3, 2004 - Hi, I think the transplant decision thread in this forum is important enough for me to clarify a couple of points. One, I opted out of the transplant process for just about the same reason, which was that it is "final." There is no going back and the committment to a regimen of high powered and very expensive medicines plus at first frequent invasive and non-invasive check-up procedures pushed me over the edge not to be included on the list. The final decision of who gets a transplant ultimately does not lie with the doctors, rather it lies with the potential recipient.
Secondly, everybody seems to profit greatly any time the medical cash register drawer opens and it seems way out of line with the incomes of Mr. Average American. I also disagree with the gluttonish salaries of some top CEOs and rant against that from time to time in local editorials. firstname.lastname@example.org
Patricia P's August 4 reply to Jon's August 4, 2004 - Hi Jon, Speaking of CHF exams, I went to the local weekend clinic a few weeks ago with a viral infection. The doctor said, "Well, your lungs are clear." He had never even listened to my lungs. I will not go back there. Patricia. email@example.com
Carla's August 4 reply to Karen K's August 4, 2004 - Hi, Thanks for the CoQ10 tip. The same ad is here in central Texas. I just went online and ordered 4 bottles. I love this site! firstname.lastname@example.org
Dawn S, August 4, 2004 - Hi, I would like to hear from anyone with an LVAD experience. My 36 year old boyfriend had an LVAD implanted after going into heart failure and a massive heart attack. He is still in the hospital right now. He was supposed to get out last week but then he got a staph infection and is fighting it now. He is in Columbus, Ohio, but we live in West Virginia 3 hours away
Needless to say, I am scared to death of him coming home and of what could happen and being so far away from the hospital. Has anyone had any experience with this device? email@example.com
Tunny's August 5 reply to Karen K's August 4, 2004 - Thanks Karen, for the CoQ10 price tip. I have it here also, in Louisiana and this will save us money. I just paid $26 a bottle. Don't we just love Jon's web site?! Thanks again. firstname.lastname@example.org
Annette S, August 5, 2004 - Hi, I have recently had an echo and my EF is 20%. I am seeing a cardiologist at the moment and a cath is scheduled for 8-11 at Tufts N.E. Medical Center in Boston.
I am looking for a CHF specialist in my area, which at the moment is Sandwich, Massachusetts. Sandwich is approximately 50 miles from Boston and 50 miles from Rhode Island. Because of the difficulty in getting to Boston (constant traffic tie-ups) I would prefer to see someone in the Rhode Island area, but would consider Boston as well.
I also need a CHF specialist in Florida as my husband and I have recently purchased a home in Venice, Florida - prior to my knowing I had CHF! I will need a CHF specialist in that area also. We won't be moving to Florida until a complete diagnosis is determined and I have been on a beneficial treatment program, which I hope happens sooner rather than later.
If anyone can recommend CHF specialists in these areas, I would greatly appreciate it. email@example.com
Maggie's August 5 reply to Michelle's August 4, 2004 - Hi, I just had to comment on the exercise statement. I live on the coast of Texas and with the heat and humidity, I just can't do any walking. I am lucky that I live where I have access to a pool. I do an hour of water aerobics every morning before it gets too hot. I bought a videotape on water aerobics and added some of my own. I'm not losing any weight but I stay flexible and get my exercise. On my last blood test the technician asked if I worked out, it seems they could tell from that! She said whatever I was doing, to keep on doing it.
As a side note, I want to thank the folks who gave me tips on flying to Europe. I had a wheelchair waiting for me at each of my plane changes. What a great way to get through customs! The folks pushing the chairs know the fastest way to get where you need to go and they get the shortest waits - there are some benefits to being sick! Having a great adventure seemed to help me so much in attitude! I walked uphill and downhill, up stairs and down stairs, and walked miles every day. I had to take frequent rests but then was able to get up and go more.
I ran out of CoQ10 in Turkey and could really tell the difference in my mental abilities. We found some there and I was back to almost normal! There was no problem in getting my meds through security. Before my adventure I was planning on leaving this earth shortly, but now I'm making plans for the next 20 years. My doctor said I needed a big adventure at least every 6 months as it improved my attitude so much and I feel better than I have since I died the first time, 2-1/2 years ago! After getting a second chance at life, every day is a gift and life is what you make of it.
I am a 65 year old lady, living alone (with my dog) on a 30 foot boat. I have a 2 burner stove, wee fridge, and have to walk 200 yards to the bathroom! One third of my heart is dead and I have an EF of 25%. I work 4 hours every day. Life is great and God is good! Maggie. firstname.lastname@example.org
Yvette's August 5 reply to Greta's August 3, 2004 - Hi Greta, Please don't give up on the CPAP. I have had mine for 5 years now and am lost without it. When I first got it I would wake up in the middle of the night to find I had thrown the mask clear across the room. That lasted about 3 weeks.
After I was able to sleep a full night with it, I was amazed by how I felt. Now my eyes simply pop open in about 6 to 7 hours and I feel rested. With sleep apnea, people get so used to feeling tired it can take some time to get used to feeling rested.
If you have a prickly feeling in your nose, you may want to get a heated reservoir to warm the air. Until you can talk to your doctor about it, use a mild saline spray nasal mist to moisten your nose. email@example.com
Yvette's August 5 reply to Patricia's August 3, 2004 - Hi, In some people fluid retention will not will start in the hands and legs. If you are weighing yourself every morning, it will be easier to see for yourself. For me, my midsection around my liver will feel very tight or I will have a full feeling like I just finished a large class of water. Or I will have a heavy feeling on my chest and feel weighed down. By the time my legs swell, I may have gained as much as 8 pounds in 2 days. My doctor also said that women who still have a cycle are more likely to retain additional fluid. firstname.lastname@example.orgJon.
Sandra, August 5, 2004 - Hello everyone, I have been on SSA for about 3 years. I just found out that my SS Disability is up for review. My EF is up to about 50%. My heart doc thinks I should feel a lot better than I do. I still have CHF and can't get through the day without feeling very tired. I still take Coreg and 180mg Lasix. My regular doc is now treating me for severe depression because of my heart meds. Should I be worried about this? The way I feel there is no way I could keep a job. I thought once you have CHF, you always have it. Jon, I read your post about your review. What do you think? Sherrill@blueridge.net
Jon's August 5 reply to Sandra's August 5, 2004 - Hi Sandra, My CHF doc noted in my chart quite a while back that "Jon is not improving as fast as his heart." My EF is 50% but I have significant symptoms as well. I recently decompensated quite a bit and am just now starting to improve a bit from that. I still take all the meds listed on my bio. You do always have heart failure once you have it, but you are not always in heart failure. See The Manual's top section for more on that.
As to SSA Disability reviews, I have to admit that I think people in our boat are in trouble - improved numbers but not always improved ability to function. However, my review is not complete so I don't know that for sure yet.
About depression, the things to watch are two in my opinion: beta-blockers can worsen or even cause depression so you might try reducing Coreg dose and raising ACE inhibitor dose to see if it helps, or add Inspra (eplerenone). Second, anti-depressants can literally make some people feel worn out, so you want to watch out for that effect in yourself. Work with your doctor to adjust drug and drug dose to lessen the effect as much as possible.
To everyone, I am not going to get all the posts up tonight but will catch up on them tomorrow. Jon.
Dave, August 5, 2004 - Hi, I have had serious side effects from beta-blockers for many years. I was diagnosed with CHF two years ago and eventually was put on Coreg, getting up to 25mg per day. I should mention that I have a very low tolerance for drugs and all of my heart medications you would probably say were at "baby" doses.
Three months ago I was experiencing pulse levels of 42 or 43 beats per minute, which made it very difficult to sit up, let alone walk around. After talking to my cardiologist, we lowered the Coreg dose to 19mg per day and now my pulse is above 50 most of the time. I am very lightheaded, weak, and very tired, I have to lie down for a nap each day around noontime. I also have days where I feel like I have been flushed down the toilet.
Is there anything I can do to minimize the effects of the beta-blocker? email@example.com
Jon's August 5 reply to Dave's August 5, 2004 - Hi Dave, You might consider switching to Toprol-XL, which is only a beta-blocker. Coreg is also an alpha-blocker, which makes it reduce heart rate and blood pressure more than Toprol-XL. Coreg's package insert states that if your heart rate is less than 55 beats per minute, you should reduce the dose anyway!. You might also add another drug or drug class to the mix, like an ARB or Inspra, and see if you can reduce your beta-blocker dose further then. You just have to patiently change the mix until it makes you feel better rather than worse.
Other possible steps include eating more but smaller meals, adding some supplements that may make you feel better without adding likely side effects, such as taurine, L-carnitine (I take the prescription form now), CoQ10, or Hawthorne. None of this may help, but it's worth a shot. Jon.
Joan, August 5, 2004 - Hi folks, This is my first time writing to you but I have been a reader for a few months. My husband has CHF and at the moment his worst problem is sleeping. Ambien and Sonata no longer have any effect on him. He will doze off after dinner and when he goes to bed, he sleeps little. He has a pressure in the chest that comes and goes and even the cardiologist can't explain it. It is this pressure that keeps him awake. A recent CT scan showed no significant problems. He also has a dry cough that is increasing with time. He is not heavy and has lost considerable weight due to loss of appetite. Any insight would be appreciated. MR38@aol.com
Jon's August 5 reply to Joan's August 5, 2004 - Hi Joan, I hope others also reply. He might try switching from an ACE inhibitor to an ARB for the cough, if he takes an ACE inhibitor. Also, being dehydrated can cause a cough as can being too "wet" so getting the fluid volume in his body right is very important. This is mainly done through adjusting diuretic dose and sodium in the diet as well as fluid intake - one way or the other.
I have no idea if it matters, but sometimes position can make a huge difference in physical feelings like the one in his chest. Using a foam wedge, sleeping on one particular side, or even in a chair or on a sofa instead of the bed may make a difference. Whatever position allows him to doze off after dinner may be a place to start experimenting on position.
Finally, a feeling of pressure in the chest can be a form of angina. Maybe he should try Nitrostat to see if it relieves the feeling. If it does, Imdur or something similar at bedtime might really help. Talk to his doctor about that. Jon.
Mary Anne, August 5, 2004 - Hi, I just read an article from the Associated Press about spironolactone (Aldactone) and related deaths due to build-up of potassium with the use of ACE inhibitors.The article was published in this morning's Pittburgh Post Gazette under Science and Health. firstname.lastname@example.org
Jon's note: This is one reason why regular blood testing is so important for all heart failure patients!
James, August 5, 2004 - Hi, As relates to the ongoing discussion of CPAPs - the key is to give it time. Using a CPAP is very much a learning process. You need time to acclimate to this thing on your face while you sleep, and for many folks that's just not an easy thing to do! The first month tends to be the adjustment period: Getting used to the mask, not taking it off, finding the right tightness for the straps, and so forth.
Many will see nearly immediate results and within a week or two they will have greater stamina, think more clearly, not need a nap in the afternoon, and so forth. Others take a couple of months to get there. As for the heart responding, my sleep doctor (Shahrokh Javaheri) has done many studies with heart failure patients and says 6 months to a year before solid improvements are in place, although again, some people respond far more quickly.
There are different masks and each has its pros and cons. Some prefer the standard nasal mask while others do better on nasal pillows and still others prefer a full-face mask. Your board certified sleep clinic can help you with the selection that is best for you.
So the end all-be all is patience. Give it time and hang in there! email@example.com
Sandy's August 6 reply to Jon's August 4, 2004 - Hi Jon, I'm new to SSD. How often do you get these exams and they are not with your own cardio doc? Who chooses the doctor you get the exams with? What state are you in and do all states have the same rules? I hope all is well with you! firstname.lastname@example.org
Jon's August 6 reply to Sandy's August 6, 2004 - You can get a lot of this information through the links at our SSD page. If you are not expected to improve, you will be reviewed after 7 years. If you are expected to improve, you will be reviewed after 3 years. Social Security chooses the doctor. Not all states have the same rules but do use the same guidelines, including the review time frame.
I hope something will surprise me with this review so I can keep the web site going. Maybe a surprise corporate donor will show up - anything's possible! Jon.
Scott Brown's August 6 reply to Tom S' August 4, 2004 - Hi, In Canada the cost of transplant and meds is completely covered by the provincial government. I am 270 strapping pounds. In order to qualify for a transplant, I am going to need to be around 210 or 220. Even at this weight, a heart with the capacity to service my body type has to be found. I have been told hearts to service larger than average people may be more difficult to locate.
At my employer, there are several heart transplant recipients. One of them runs the daily advanced aerobics sessions in our fitness area. She was 19 years old when she was transplanted. She has had her new heart for 8 years, and she highly recommends the procedure. Scott B. email@example.com
Donna H's August 6 reply to Tom S' August 4, 2004 - Hi Tom, I am glad to hear that you have managed to get along so well without a transplant. Do you have any special treatments or meds that have helped you? My husband would have preferred to not be doing the transplant workup but right now he is at the point that he is going to be put on a weekly dobutamine schedule because of his heart failure. Currently he is taking 19 prescribed medications plus CoQ10 and selenium. He watches his diet carefully and leads as active a lifestyle as possible, even playing at a couple of dances in between hospital stays.
I agree that prices are outrageous but his doctors and nurses have been kind and caring, and more concerned about him than the revenue he generates. We are extremely lucky that he is a veteran. He has actually recieved better care here at a VA hospital than at some public hospitals. There are good and bad people in any profession but his nurses in ICU have been wonderful.
Although I don't like to think of the surgery ahead and the lifetime of meds, his life now is very limited because he is spending a minimum of 3 days of each week in the hospital. We have put the matter in God's hands and are praying that His will be done and that we will be able to accept it joyfully. firstname.lastname@example.org
Blake S, August 6, 2004 - Hi, I had a heart transplant 4 years ago. All things have not been easy. I have had infections, rejections and reactions to certain medications. It is because of this surgery that I was allowed to become a dad. My heart was less than 8%. I was not supposed to live through this last weekend 4 years ago. Through all the ups and downs it was well worth it for me. I know quite a few transplant recipients, some who have done real well and others not as well. I do not know of one personally that has regretted their decision. Brikc2000@yahoo.com
Tunny, August 6, 2004 - Hi, My doctor says that I am well compensated with CHF. I recently went for a routine appointment and my doctor was out so I talked with another doctor. This doctor recommended I wear a holter monitor for 24 hours. This will be the second one in a 5-month period. The first one checked out good. This time they said the monitor test looked good but had a slight thing that they feel I may need to go back and talk with another doctor about installing an ICD.
This doctor seem to favor the ICD even before the monitor test results. I am feeling good and do not think that I need an ICD implanted. I plan to talk to my doctor before letting them do anything. Jon, what are your thoughts on this? I appreciate your reply and thank you; I depend on your site a lot. Thanks again, Tunny. email@example.com
Jon's August 6 reply to Tunny's August 6, 2004 - Hi Tunny, My personal opinions are a bit vague on this one. First, I agree completely that you should discuss this with your own cardiologist before seriously considering it. Second, if you don't have any recognized arrhythmias of the deadly sort, I would want some really strong reasons for a device implant. Too many doctors favor them "just in case." I think you should have a real risk before implanting a device inside your body with wires going into your heart.
However, with that said, if your doctors do have strong reasons, you should definitely consider it. You might want to get a copy of your medical records and read through them to see what all your test results and doctor opinions really are in black and white. After that, you might want to get a second opinion at a different institution just to be sure. Either way you go, I think you are wise to stop and look at all the angles first! Jon.
Samantha B, August 6, 2004 - Hi, I am looking for more information about the right heart catheterization procedure, not the left heart cath (angiogram). I have had this procedure 3 times now, but would like to learn more about it. I have pulmonary hypertension that is due to my CHF, so I am curious to learn more. Let me know if you know of where I can find good information. firstname.lastname@example.org
Jon's note: Try www.medstudents.com.br/terin/terin1.htm and www.chfpatients.com/ph.htm#right-heart_cath.
Sandy's August 6 reply to Carla's August 4, 2004 - Hi Carla and everyone, Please read the labels before buying CoQ10 or any vitamins. I looked into several brands and some have a high sodium content. The prices vary and it's easy to purchase the inexpensive ones but beware! You're probably paying for better quality with the higher priced brands. Good luck to all! email@example.com
Mary Anne, August 6, 2004 - Hi, I am calling the doctor tomorrow to talk about going back on Toprol-XL at 80mg a day. That's what I took before I was switched to Coreg. I'm only at 6.25mg twice a day now, but I am so achy, especially in my legs. I haven't had this problem for a long, long time and I think it's due to the new drug. Is switching back complicated and can it cause me difficulties? Thanks for your help. firstname.lastname@example.org
Charles, August 6, 2004 - Hi, My internist wanted me to take the sleep test last March and said they would call and tell me when to report but they never did. Because I dread the idea of the CPAP, I haven't pushed for it. I sleep with a Mattress Genie ($150) that inflates beneath my mattress and elevates me, plus I have a very powerful fan blowing directly into my face beside the head of the bed.
I too get severe foot cramps sometimes, even though I take potassium and sometimes quinine. Rubbing cream into my feet and in extreme circumstances, wearing socks, seems to cut down on them. I started taking 100mg of CoQ10 several months ago but don't know why. I take two 12.5mg Coreg tablets daily and am often depressed. I learned more about the "fullness" after eating in a new book I received from Amazon today: Success With Heart Failure by Dr. Marc Silver on page 40, under "early satiety."
I am still looking for a CHF specialist in northwestern Florida. The closest in Jon's guide is in Mobile, 2 hours west. I have been examining the pros and cons of medical treatment in Mexico for some months. I read where one man received a heart transplant and 3 months followup for $8000 US but another account this month by Karen Blue on mexico.connect.com does not speak well about IMSS, the Mexican national health insurance. She met with delays, runarounds, and pill shortages.
This site reminds me of Dumas' Three Musketeers: "All for one and one for all!" email@example.com
Gene's August 6 reply to James' August 5, 2004 - Hi, To Chuck and all those who have had difficulty adjusting to CPAP, I agree wholeheartedly with James, even though I had a heck of a time getting used to it at first. I have been on CPAP for many years and feel it is as essential in treating CHF-with-sleep-apnea as meds are. Some tips follow.
The difficult part is usually the initial falling asleep with a mask or nasal pillows. I now go to sleep without the CPAP mask on but set a small alarm clock (one that wakens just me and not the whole household) for one hour past my projected falling-asleep time. Then when the alarm goes off, I put on the mask and find it much easier to fall asleep with it on then.
Regarding dry mouth, a humidifier attachment to the CPAP unit can help that a lot. Regarding difficulty with breathing out against the continuous positive air pressure coming in, I have a lot of trouble with that also. There is a new version of the CPAP called a bi-PAP, which automatically adjusts to your breathing pattern and stops the air pressure when you exhale so you are not fighting against the machine. I am trying to get one now through my pulmonologist. I know a couple of the CPAP companies now make them - Respironics is one of them.
Regarding the discomfort of various types of headgear, I have learned of a device that has no straps and doesn't shift about on one's face. It works by means of a mouth piece similar to the ones football players use. The mouth piece is secured by the teeth in your upper jaw, which never moves in relation to you nose. So it requires nasal pillows, but apparently these are inflatable so they could be more comfortable. See www.nomask.com. I should have one in a week or two, so I will let you know how it works out.
Finally, I also use an MRD (mandibular repositioning device) that - depending on the anatomy of your mouth and throat - can help with apnea. It is uncomfortable as all get out to get used to, but well worth it, especially on the nights when I can't use the CPAP at all for one reason or another.
Also, a good site about CPAP, biPAP, headgear, etc,..., is http://www.cpap.com/bipapfaq.shtml. It may be a bit commercial, but has a lot of info. I hope some of this helps, but hang in there and keep trying. Gene. firstname.lastname@example.org
Sandy's August 6 reply to Jon's August 6, 2004 - Hi Jon, Have you been putting up all the money for this site? If so, I'll start looking for a benefactor. How good of you to be doing this. My best to you. email@example.com
Jon's August 6 reply to Sandy's August 6, 2004 - Hi Sandy, Nope. We used family money to pay for all expenses for about 6 years, then formed the corporation CHFpatients.com, Inc., a 501(3)c non-profit with the IRS and state revenue department so all donations are tax deductible in the USA. Reader donations cover all the site's expenses now but one.
Unfortunately, the one is a salary for me. <g> That's fine as long as I have disability money coming in, but if that ends, I'll have to get a job that pays the bills at home. Then I won't have time, energy or money to keep things going around here.
I would like to add that my readers are the best anywhere, hands down. You guys have kept this site going with everything from outstanding posts and information to donations to even sending me hardware when my pooter tried to die several times! I can't keep up on all the heart failure information out there and people tipping me off to new info saves me. Thank you all! Jon.
Tom S' August 7 reply to Donna H's August 6, 2004 - Hi Donna, Perhaps I gave the mistaken impression that I have been fit as a fiddle for the past 8 or 9 years but that is far from the case. I currently enjoy an EF of around 20% and suffer with severe fatigue most of the time. I have paced myself and do not engage in very much activity because any activity I undertake, including such simple things as preparing a small meal or holding up a newspaper to read it, causes fatigue. I understand that some people who have had transplants are quite active and all I can is refer you to the comments Jon made earlier on the topic. I am blessed with 8 living children (ages 10 through 34) and 6 grandkids (ages 11 months to 13 years) and I am grateful for every second I have on this earth. I credit a lot of that to listening and paying attention to my body and condition, and when it says to lie down or sit down, I don't ask why.
Sometimes things that happen earlier in life tend not to make any sense but thank the heavens above that I was in the US Navy during the Viet Nam conflict and that has earned me a spot in the VA medical system, which has been very satisfactory. As a matter of fact I have an appointment this week at the VA hospital in my area for a follow-up on my CPAP machine (thumbs down) and also to discuss the fact that the VA believes my condition is a "direct result" of my military service. They are recommending a 50% service related disability for me. I already receive all my meds from the VA and think very highly of the entire staff at the facility at which I am a patient. firstname.lastname@example.org
Ben B's August 7 reply to Jon's August 6, 2004 - Hi, I went through my disability review about 2 years ago and one thing I discovered that helped me in California was developing a good rapport with the case worker. Although the doctor makes the decision in some cases, I think the case worker can help out a lot. In my case, I had improved to the point where my doctor would not even sign my forms. I had medical tests showing my heart size was still enlarged and emphasized those with my case worker. Somehow, they passed me but told me I would have 2 years until my next review.
Since I felt myself that I could possibly work, I went out and found a job which is not too demanding and I've been working for about a year and a half. They basically let me know that I had just skated by and unless something really got worse in the next couple of years I'd be kicked off for sure, but at least I still had a little time to arrange things.
I don't think my experience is unique. Even if you suspect you might get the boot during your review because your numbers have improved, they may show a little compassion and at least give a little "cushion." Plus, I think there is some appeal process as well. At least that was my experience, and I hope everyone else getting reviewed has good luck. email@example.com
Jon's August 7 reply to Ben B's August 7, 2004 - Hi Ben, There is no direct contact with the case worker here. My own caseworker has changed multiple times without any notification to me, making it tough to keep my file properly updated. The strange thing about this is that the Disability Review office for SSA is only 5 minutes from my house. The case worker for my review is different than the one usually assigned to my case. If Vo2max was written into the guidelines, I'd have a definite shot because despite highly structured exercise over years, my Vo2max refuses to rise beyond 50% of normal - definitely a result of heart failure and the reason for my symptoms. Jon.
Pamela, August 7, 2004 - Hi, My name is Pam. I am 31 years old and was diagnosed with cardiomyopathy 3 years ago. I have a defibrillator that I have never had any therapy from. I am getting ready to have mine changed already. They say that my charge time reached it's max, at 28 seconds. At my checkup, they got it down to 20 seconds but I guess that is still a long time to wait if I need therapy.
I was wondering if anyone has had their ICD changed and how does it feel? It is a serious surgery? I am afraid to know that they have to induce an arrhythmia on me to test it. My mind always thinks about not being able to come out of the arrhythmia. It is scary but I just wanted to get some input on what it is like having it changed. Thank you. firstname.lastname@example.org
Steve, August 7, 2004 - Hi, I am new to this site. I am a symptomatic CHF patient sinve 4-03. At that time I had a 25% EF; probably somewhat better because of medications now. However, my symptoms still include shortness of breath on very little activity and extreme fatigue at almost all times.
I am on the max of a slew of medications including Coreg at 50mg BID, which adds to the fatigue. My cardiologist recently recommended that I consider having a special pacemaker implanted. The device seeks to resynchronize the heart beat so that both ventricles beat at the same instant. The video (a commercial produced by the manufacturer) looks good enough, but I am wondering if anyone has experience with this type of treatment. Many thanks, Steve. email@example.com
Jon's note: Also, check the Me Too! listings beginning at www.chfpatients.com/biosgate2.htm. You might start at the last page and work backwards since this therapy is relatively new.
Donna H's August 7 reply to Pamela's August 7, 2004 - Hi Pam, In July they put in a new pacemaker for my husband and added a defibrillator. The doctors told us beforehand that they would test it by inducing an arrhythmia. They reassured us that it is a controlled test and that he would not be in danger. He said that changing his pacemaker was much like having it put in the first time. Were you awake for the procedure the first time? firstname.lastname@example.org
Brenda H, August 7, 2004 - Hi everyone, I had a sleep study done and yep, I do have sleep apnea. I will go back at the end of this month for the CPAP study. I dread wearing a face mask but if it makes me feel better then I'll get used to it. I need all the help I can get in that area! <g>
I do have a question though. The sleep study said that my baseline average for oxygen desaturation was 87% and the minimum oxygen desaturation was 76%. Does that seem extremely low to anyone besides me? Is it something I should be concerned about? My internist didn't comment on it. Should I let my cardiologist know about this? Any info would be greatly appreciated!
By the way, I have had heart failure for a little less than 2 years. My EF was 18% when diagnosed and now is 30%. I am 47 years old. I love this board! Thanks, Brenda H. email@example.com
Gatha S, August 9, 2004 - Hi Jon and fellow CHFers, I was wondering if any of you have been chosen to participle in a Medicare study for CHF and diabetes? I received papers a couple of months ago, filled them out and was just notified that I was chosen. It will be a 2-year study with your own nurse plus a huge discount for drugs and a talking scale delivered free of charge to weigh on and record how you feel each day with the information transmitted somewhere and you will be called if things get out of line. It sounds great so we shall see. So anybody out there, have you heard of this? Thanks, Jon. Jell855859@aol.com
Pamela's August 9 reply to Donna H's August 7, 2004 - Hi Donna, Thank you for replying to me. When I had my defib put in 3 years ago, I was asleep during that procedure. They tell me that having it changed out is much different, that I will be awake and that they just numb me locally while they take it out to put the new one in. They said I won't have a tube down my throat and all the major things like the first time. It's kind of scary to know that they actually induce an arrhythmia.
Another thing I was wondering is do they ever have to change the leads that go into the heart? I know they change the boxes out. I was just wondering what I am looking forward to here pretty soon. Thank you. firstname.lastname@example.org
Jon's note: Also, don't forget to use the device forums listed at www.chfpatients.com/links.htm#forums.
Jeff A, August 9, 2004 - Hi, I was diagnosed with heart failure 12-03, 14 months after an aortic valve replacement. After valve surgery, my AV node did not function so a pacemaker was implanted, which controlled my ventricular beats.
In March of 2004, they recommended I have the pacemaker replaced with a biventricular pacemaker/ICD, primarily because I was continuing to have rare incidences (once or twice a month) of my heart rate rising to 170+ for very short periods. They were reasoning that I also was having many other high rate incidences below the 170 beat per minute threshold my pacer was recording.
My device implant hospital stay was 7 days. Four of those days were the beginning and ending period manipulation of my INR because of requiring blood thinners, but needing my blood dialed in for the procedure. The procedure took approximately 2 hours and I can only remember a very short period where they were asking me to cough as part of the arrhythmia testing. I was not under general anesthesia, but remember nothing else.
I had difficulty initially with very significant swelling of the area to about the size of a softball. They monitored that closely while resetting my blood levels and I was released within one day of the earliest I could have expected, on a Friday. I took Tylenol with codeine for discomfort for about one week, but was able to return to work 2 days after discharge.
The ICD has not been required to provide therapy since it was implanted, however another very short high rate incident was recorded on July 10. It still paces 100% of my ventricular beats. It is a little bothersome with seat belt/shoulder harnesses and when I sleep on my left side, since it is implanted in my left shoulder. It is not painful, just annoying.
That is about all the info I can offer for now. There is some sense of security in knowing the ICD may keep me alive until paramedic help can get to me in the event of attack or bad arrhythmia but it is also another little thing, as the original pacemaker was and that any treatments are, that never-ever lets me forget that I have this condition. This is for me is part of the psychological battles that are just as real as the physical battles. Being battery operated and remote controlled creeps me out at times.
Gather as much information as you can and make the choice that is best for you. Best wishes to each of you and your loved ones. Jeff A. email@example.com
Michelle's August 9 reply to Maggie's August 5, 2004 - Hi, Thanks for the suggestion on swimming. I will try it now that we have a key for the pool. One of my sisters is putting in a pool in her backyard and it will make it all the more comfortable to be able to swim when I want to. It's great that you went on your adventure. I am thinking of doing a road trip soon with my best friend.
Jon, the number I mentioned was the pulmonary pressure. I am told that it is supposed to be around 25 or 30, and mine was 52 or something. I guess that is a whole different thing than the CHF numbers though.
Anyway, I hope everyone out there is having a good day. I just spent it at the beach with my sister-in-law and her dog! I am trying to let all the little insignificant things that always used to seem important go, and enjoy the present. Presently, I am going to spend some time with my son so I will close now. firstname.lastname@example.org
Jon's August 9 reply to Michelle's August 9, 2004 - Hi Michelle, "Pulmonary pressure" comes in many flavors. <g> See www.chfpatients.com/ph.htm#glossary (let it load) for more on that. I believe MPAP is the most commonly used but it pays to know exactly what was measured or misunderstandings will almost certainly occur. Jon.
Gene, August 9, 2004 - Hi everyone, Can anyone out there recommend a good cardiologist in the Denver, Colorado area? I would like to find one who listens and does not rely on "speed-reading" of my file to make decisions. Thanks, Gene. email@example.com
Roger, August 9, 2004 - Hi, We did a little traveling last week and stopped at a Cracker Barrel and also a Bob Evans. I had the usual rough time finding something that wasn't loaded with sodium. I made the suggestion at the restaurant to get a few things in that were not breaded, injected, or marinated. I talked to the managers and they suggested to send this to the web sites, which I did, and also suggested that they have a small section - even if only a few items - of low sodium on a small spot on the menu so we didn't have to ask the waitress 101 questions.
I also begged them to have a total non-smoking establishment. I was told those were good suggestions and would be turned over to the appropriate departments.There are a couple of places in my area that I can't eat at. I like to travel but the eating can be a hassle! firstname.lastname@example.org
Carla, August 9, 2004 - Hi all, Have any of you noticed problems with indigestion since starting CHF meds? I've been on the meds now for 8 months and have started to develop very persistent heartburn. Sometimes, even drinking water makes me uncomfortable. I am just wondering if I should ask for another prescription to add to my daily cocktail, and what you folks are taking? email@example.com
Tom Campbell, August 9, 2004 - Hi all, I have DCM, an ICD, and an EF of 20%. Coreg brought with it SOB, weakness and fatigue, and made my depression worse. My CHF specialist cut me back to 3.125mg BID on Coreg but the symptoms persisted, especially the depression.
A couple of weeks ago, researchers running a major study of BiDil with African American CHF patients cut it short because those on BiDil were doing so much better. BiDil is not yet approved. It is a combination of isosorbide and hydralazine. My doc decided to take me off Coreg entirely and replaced it with two prescriptions - isosorbide and hydralazine. There has been no noticeable change yet. For my heart, I'm also taking Accupril 40mg, Digoxin 0.25mg, Bumex 2mg, and Inspra 25mg, plus vitamins and aspirin 325mg. I read in this group that people are sticking with Coreg despite the bad effects. Am I crazy not to be taking Coreg? firstname.lastname@example.org
Jon's note: For those not familiar, nitrates like isosorbide dinitrate plus hydralazine were the standard CHF meds before ACE inhibitors came along.
Jon, August 9, 2004 - Hi everyone, Straight to the point, if anyone knows where I can get a really good (and legal) deal on a Windows XP Home operating system, please e-mail me with that information. This is for the computer I use for the web site. I ordered the extra RAM for this poor old pooter today. While it's slow by today's standards, it's fast enough. ;-) I don't want XP but the old Win ME I'm using is awfully tired, just like me. <g> Please don't suggest Linux - been there, done that. Jon.
Sandy's August 9 reply to Brenda H's August 7, 2004 - Hi Brenda, I too had my sleep study and I got a phone call about 3 days later from my cardio doc. He scheduled an appointment for me with an "internal medicine-pulmonology-critical care-sleep medicine" doctor. He did not like my oxygen levels! I did not understand my levels so I'll get back to you with the results after the 17th of the month. Good luck to you! email@example.com
Sandy's August 9 reply to Roger's August 9, 2004 - Hi Roger, I too have had a lot of trouble eating out. Most restaurants have set menus and it's just not easy finding food without salt. The only restaurant I have found that will be of help is a "good" restaurant with an actual chef in the back who will cook from scratch. Those restaurants are much too expensive for most so I usually just eat the veggies when eating out. Most can steam frozen veggies with lots of herbs and no salt. Be careful, though. I have returned food, that did have salt even though the waitress said "they can do that for you." firstname.lastname@example.org
Marly's August 9 reply to Pamela's August 9, 2004 - Hi, I had a dual chamber ICD implanted in June of 2002 just after I had mitral valve repair to treat my heart arrhythmia (V-tach) secondary to IDCM. This was replaced by a biventricular pacemaker/ICD in April of 2004. The procedure took about one hour and I stayed just overnight. I was half awake but when I complained about the pain, I was put to sleep and woke up only as I was being wheeled back to my room.
I developed a complication called wound dehiscense (slow-healing wound), likely due to my insulin-dependent diabetes and my traveling a lot within the first month of implantation. A surgeon treated and restitched that wound and it is now okay. After about 2 months, the device was optimized for maximum pumping efficency of my heart by a combined team of electrophysiologist and echocardiographer. They said I had a 10 to 15% EF improvement over my 10 to 15% pre-BiV pacer EF. So far so good. email@example.com
Paul D's August 10 reply to Roger's August 9, 2004 - Hi, Eating out can be very hard. Many chain restaurants, even sit-down ones, use partially pre-processed ingredients, so even if the cook in the back doesn't add salt, there is plenty of salt in them. Chicken pieces are often treated with a seasoning brine and many times the vegetable medleys are from cans or frozen, and have been salted. It helps to ask the staff to cut out salt but sometimes they do everything they can and you still get a ton of sodium.
As Sandy says, it helps to find a place that cooks from scratch using fresh ingredients, but they aren't usually near the Interstate and are harder to find when traveling. What I've done is to search the web sites of fast-food chains before I go. There, I can usually get the nutritional information including sodium, for everything on their menu, and I pick out a combination that has an acceptable amount of sodium; notice I said acceptable, not great. Then I always order that. I keep track of what my running total of daily sodium mgs is and hit a supermarket for salad, fruit and other safe food if I'm getting too much too early in the day.
There are some places I just always stay away from, because I'd expect they give even their customers without CHF too much sodium. firstname.lastname@example.org
Mary Anne's August 10 reply to Tom Campbell's August 9, 2004 - Hi Tom, After I started Coreg (small dose), an antidepressant I had used for years quit working. My doctor changed me to Lexapro and I am doing well. I'm at 6.25mg Coreg BID and it doesn't seem to be bothering me. I haven't experienced much lowering of my heart rate but it's not overly high anyway.
Don't berate yourself if you can't take it. We may all have CHF but we are all different. email@example.com
Alexandra's August 10 reply to Jeff A's August 9, 2004 - Hi Jeff, I have the same device (also implanted in March of 2004) and have problems with seatbelts, sleeping, etc. Mine paces 100% of the time so I too am literally running on batteries. It is a constant reminder of our condition but I look at it this way: 10 years ago they did not have this technology and people like us would have surely died. Just think what they will have in another 10 years.
Yeah, we run on batteries and there are times when I just sit, cry and wonder why this had to happen to me, but I am still here and so are you. There is a reason for everything and whatever the reason is that we have this condition must be for some greater good. I thank God, my mother and my doctors every day for this device and I will put up with the seatbelts, uncomfortable sleeping and anything else that it causes to bother me. I would rather be here with my 3-1/2 year old son than the alternative.
I totally agree that armed with information, people will make the best possible choice for themselves. I have been hearing a lot of people talk about the BiV pacer and what they should do. Anyone who has this as an alternative should do their homework, print it out, and ask all the questions. If you show the docs that you know more about your condition than the average person, I think they take you a little more seriously. Mine did, and believe me, I asked questions from sleep to sex.
Good luck to anyone considering this option. I happened to have had a very good experience but it is not always the case and a good doctor will tell you the pros and cons. God bless. firstname.lastname@example.org
Donna H's August 10 reply to Roger's August 9, 2004 - Hi Roger, Eating at home has us spoiled but we have had so many doctor's appointments far from home that we were forced to eat out several times. Low salt is difficult but this time we found it almost impossible because my husband is fluid restricted (1500 cc) and had his teeth pulled so he needed soft food and is eating low-carb and no sugar. You remember that old joke about "Give me a glass of water and a toothpick?" He couldn't even have the water and didn't need the toothpick!
I hope that gave you a smile but seriously, one thing we have found is that in many restaurants they salt the grill so even grilled meat and veggies have more salt than he can have. We have asked that the grill be wiped down before preparing his food. Also, we have found that the sodium content on bottled drinks such as lemonade is outrageous. The hidden sodium is most dangerous but we have also found that now we prefer our food without salt so even when others tell us that something is "low-salt" it is too salty for us. email@example.com
Sadie Bradley-Smith, August 10, 2004 - Hi, I have CHF, cardiomyopathy, restless legs syndrome, CAGS, AMI, and sarcoidosis. My blood pressure varies from 85/54 to 60/33. I am on many different medications. Does anyone have any suggestions how to help with my blood pressure? firstname.lastname@example.org
Jon's note: What blood pressure medications do you already take? Do you eat low-sodium?
Charles, August 10, 2004 - Hi, I find that the tiny little Chinese countertop restaurants who prepare from scratch cheerfully take my requests for no added sodium or MSG. With people's interest in nutrition, they often post chalkboards with "dieters' specials" that can be healthy, too. They are so ubiquitous you can usually find one or more in any town. Bon appetite! email@example.com
Jon's note: Just watch out for any and all soy sauce and other Chinese sauces!
Michelle, August 10, 2004 - Hi again, You know, I have been reading a lot of messages with people having trouble with CPAP. I had been having so much trouble sleeping and waking up with my chest pounding and headaches and just feeling sooooo lousy that when I got my CPAP it was like heaven!
I too had trouble getting used to the mask. I must have pulled it off my face 3 or more times a night the first week or two that I had it. I used the mask that just covers the nose. I must say that if you have a mask that doesn't fit, it can really be hard to get used to. I was given a medium-soft series mask and it came down over my top lip and was very uncomfortable. When we switched me to a small mask, it was snug but it really made a difference. The quality of sleep I got when I started to wear it was so unbelievably better that I was amazed.
My daughter had been telling me from the time she was 6 years old that it scared her because she could tell I wasn't breathing at night. I used to tell her she was just having nightmares and mommy was just fine. Finally when she was 14 years old and I was so sick and tired of feeling so sick and tired, I went to the sleep lab and they found that I had severe sleep apnea.
I have been on CPAP for over 5 years now and probably if I had addressed the problem before, I would not have heart failure now. I just want people to know that if you are told you need a CPAP machine, try to get used to it. It could very well save your life. firstname.lastname@example.org
Roger, August 10, 2004 - Hi, Yesterday I went to the cardioligist and he gave me a check-up and said all my blood work came out good. The numbers are where he wants them and he told me again how boring I was, with a smile. I won a 6-month membership to a health club and I was told before I started that I'd have to have a release from the doctor. I asked him about that and he thought I'd be fine but that I had better have a stress test, so on September 29, I get my first stress test in 14 years! I was supposed to sign up by today, but I talked them into waiting so I could get the exercise inside during the cold weather, so they said October 1. email@example.com
Amy, August 10, 2004 - Hi everyone, When first diagnosed with DCM, my EF was 30%. After being on Monopril for a year and losing 130 pounds my EF went up to 40%. Meanwhile I had 2 failed attempts with an ablation for my V-tach, which they put me on sotalol after the second one failed.
I was in the ER 2 weeks ago because I was very lightheaded and dizzy. They said it was due to my heart rate, which was in the low 40s so they told me to halve my sotalol dose, which I was taking 80mg twice a day, so now I'm taking 40mg twice a day.
I saw my EP doc today. He said my V-tach is no longer there since I've been on the sotalol. I used to have constant V-tach. The doc even said my EKG was abnormal for me <lol> considering they're not used to seeing a normal EKG on me. He is worried because my heart rate is still low. He said the sotalol isn't the cause of the slow heart rate since he lowered the dose.
Now he has me scheduled for an echo to see if its my DCM is causing my low heart rate. Does DCM cause slow heart rates? Any advice to what to expect? Thanks to everyone in advance. firstname.lastname@example.org
Roger's August 11 reply to Michelle's August 10, 2004 - Hi, I thought at first that I was one of a few that had sleep apena but like you, I see a lot of posts. There are some days that I just seem to be plugged up and wear it maybe one or two hours, or not at all. I can really tell it in a couple days. I was driving home from work one morning and fell asleep - a real scary feeling!
I don't know why but my doctor started me on the CPAP and then switched me to the Bipap. I've tried the nose mask, which I use, but I've also tried the nose pillows. I didn't really like them because of the harness I had to wear. It was harder to get free to go to the bathroom. Last winter I was going to get a heater for the humidifer and found that it would cost about $100, which my insurance would not pay. I do without okay now! email@example.com
Roger's August 11 reply to Donna H's August 10, 2004 - Hi, What makes it all the more interesting on low sodium meals is that I also have to watch carbs since I am a type 2 diabetic also. There are a lot of places that use butter on the grill so sometimes I just have to take my chances. If I watch just the sodium, which I did at one time, my blood sugar went up, so I have to balance everything out. firstname.lastname@example.org
Jeff Anderson's August 11 reply to Alexandra's August 10, 2004 - Hi Alexandra, Thanks for your perspective, which I agree with on most days. I never wonder why this has happened to me - genetics and probably some of what I did to myself from age 21 to 36 certainly are contributing factors. No regrets. It is just something I try to deal with the best I can and many days I succeed.
But if you sensed I was a little blue on Monday, you are very perceptive. It was the day of my first follow-up echo since we started this medicinal assault. I won't know till Monday, August 16th, how it went but I did not have a good feeling intuitively after it was over. We shall see, but if we have not made progress then I will be having serious discussions about deleting some of these drugs.
If we have made progress, held our own or better, I will be very thankful and try to make the best of what my future life holds, including again, serious discussions about what if any of these drugs I can change or eliminate. I have excellent doctors, but they are much more impressed with "numbers" than with my descriptions of side effects. That will be my future focus in living with this condition. Best regards to you and your family. Jeff A. email@example.com
Myrtle C, August 11, 2004 - Hi, I have had problems because my cardiologist doubled my potassium. I began to feel weak, listless and nauseated with a headache. I finally checked "My Pills" book and those were some of the symptoms. I just wanted to share this.
I also have read about a new genetic breakthrough that may help us with meds. Many meds' effectiveness can be affected because of our genetic makeup. It is said that one in ten Americans have a bad version of a gene that produces an enzyme called TPMT. This enzyme helps break down certain drugs. Blood tests are available for many of these drugs, including antidepressants, warfarin, and others. Labs do the tests, which cost $250 to $500 each. Call 877-626-6436 for information on testing sites. This info came from the May issue of the Reader's Digest "Making Medicine Safe." It seems to be worth checking into. firstname.lastname@example.org
Dale E, August 11, 2004 - Hi, Last year my dad was hospitalized for about 5 weeks. At the time he had all kinds of problems including a-fib, edema, nausea, leaking valve, to go along with his heart failure. He had a few procedures done, which included ablation, having a 3-lead pacemaker put in, and some other things I can't remember.
Since then he has improved but of late he hasn't been feeling well again. He went to the doctor and they said he has a separate a-fib than what he had before. This a-fib I guess cannot be detected by taking his pulse and only by echo. Has anyone had this sort of thing? Or know anything about it?
They are putting him on pacerone, does anyone know anything about that drug? How worried should we be? He is currently 60 years old and he was doing well for the last year up until now. I guess that is kind of what you have to deal with when you have CHF - ups and downs. Thanks for the help and God bless, Dale Entrekin. email@example.com
Joy, August 11, 2004 - Hi folks, As some of you may have noticed, I am new here. I just found you fairly recently and I am from New Zealand. Some of our drugs have different names and it can require some research to cross-reference with your experiences.
Anyway, I have a question. If beta-blockers block norepinephrine, is that why beta-blockers either cause or excacerbate depression? I am a chronic depressive anyway, and am just taking my first steps on the CHF trail. firstname.lastname@example.org
James, August 12, 2004 - Hi, I just had a meeting with my cardiologist as well as an echo, so I thought I'd drop an update. The appointment with my cardiologist went fine but there is lots to report. First off, my EF is now rated at 40 to 45% via echo (just a few months ago it was 30 to 35%) and the size of my left ventricle is now about 6 cm. The Mayo Clinic has released a new position on what size constitutes normal. Evidently, up to 6 cm is considered normal in the current population. The previous averages were based on data from 20 to 25 years ago and things have apparently changed. I'm still enlarged though since I started out at 5.1 cm so averages notwithstanding, there's still room for reduction.
On the bright side, 4 or so months back I was at 6.1 cm and 4 or so months before that I was at 6.3 cm. Just before implantation of my BiV pacer I was at 6.5 cm. The reduction is encouraging.
Lastly, over the last 8 months I have taken off a solid 10 pounds and I recently gained a few pounds in water weight so I know it's even more. The cardiologist was also pleased with the sounds of my heart's beating and valves. Sounds common to CHFers were absent and things sounded stronger in general. He was very pleased. email@example.com
Doris, August 12, 2004 - Hi, Does anyone live in Illinois? I was wondering who has a doctor in Peoria (cardiologist). I'm not sure if I like who I have. Thanks, Doris. firstname.lastname@example.org
Darlene, August 12, 2004 - Hi Jon and everyone else on the site, I would like to know your opinion on the latest finding that was broadcast on television a couple of weeks ago about the drug spironolactone. I went to my doctor on August 5th to question this as apparently so did quite a few other of her patients as soon as they heard this report.
This doctor of mine, whom I have seen regularly every two months for 4 years, was quite infuriated. She thinks there is always too much focus on the negativity of drugs rather than focusing more on the positive effects on how that drug is actually helping the patient and making a better quality of life and a longer life span.
I have been taking spironolactone for 3 years now as well as other heart medications and do not enter the hospital nearly as much as before. So far so good. So I just wanted to know what you have heard and learned about this. Thanks so much. email@example.com
Jon's August 12 reply to Darlene's August 12, 2004 - Hi Darlene and everyone, Although I did not see the report (I no longer watch much television), I bet it missed some important points. Here's how potassium levels and CHF meds stack up:
If you do not have these routine blood tests (and have the results checked by your heart doctor), you are at risk for dangerous potassium levels if you take any one or more of the drugs listed above. As you see, Aldactone is just one of the heart failure meds that changes blood potassium level. That's why you need to read the Routine Blood Tests page. There are other tests necessary if you take other meds like digoxin (Lanoxin).
I am guessing that the media focused on one narrow aspect of this situation (Aldactone) and thus misled people into thinking that spironolactone is the problem. It is not. The problem is doctors who do not watch their patients' blood levels of potassium!
Please educate yourselves on this and other issues by really reading all the pages available on this web site. That is the one thing that will keep you safe and feeling as well as possible when your doctor drops the ball.
I hope this explains it - if the report mentioned contained other info, send it to me and I will address that. I have seen the media focus on one part of a story to the exclusion of critical facts so often that I am just assuming this is what happened. Jon.
Sherri's August 12 reply to Roger's August 9, 2004 - Hi, I'm going through the same low-sodium eating out issue with a family member. I'm not sure if you've already seen this, but there is a link from Jon's link page on Low Sodium Foods. The link under there for "Low Salt Foods" takes you to a site from where you can access a quick guide of sodium content in common fast food places. It's good info for when you might be on the road and need to eat. firstname.lastname@example.org
Lori, August 12, 2004 - Hi, My husband had a massive heart attack last September when we thought he had the flu. In November, he had congestive heart failure and was hospitalized for 15 days. An angioplasty was performed and indicated progressive coronary artery disease. He had bypass surgery in December and had a myocardial resectioning performed.
I am having a difficult time finding any information other than the brief description of this procedure. The thoracic surgeon advised this was the only way to go, and the cardiologist was not quite convinced, but after surgery was okay with it. Is there anybody else with more information on the myocardial (or endocardial) resectioning? Thank you so much. Reaneys06@aol.com
Jon's note: This is also called partial left ventriculectomy or the Batista Procedure. It is rarely done anymore because it showed good results in very few patients. My info on it is at www.chfpatients.com/surgery_old_2.htm. I believe Cleveland Clinic still does it on carefully selected patients.
Gene's August 12 reply to Myrtle C's August 11, 2004 - Hi, Regarding genetic tests to see if certain medications will work on a particular person, these tests are relatively unproven so far. I fear that there may be some outfits out there with bogus tests and bogus claims trying to dupe patients like us. I also doubt if any insurances cover the cost these tests yet. My suspicions are heightened because I work in this field of diagnostic testing. I would only trust such a test if it was ordered by a physician and performed by a laboratory that is affiliated with a university hospital or teaching hospital. Be wary. Gene. email@example.com
Jon's August 12 reply to Gene's August 12, 2004 - Hi Gene, I won't weigh in on genetic testing for meds effectiveness in general. I will say that if I wanted genetic testing, I would have my doctor order it from a reputable lab so we fully agree.
There are a couple of such tests that suggest better effectiveness for specific drugs. Unfortunately, the tests involved are not standard and are only indicators that one or two specific drugs will not work as well for some as for others. This makes them of relatively little usefulness on a large scale since the drugs still work - just not as well in people with certain genetic structure. Ss far as I know, these few genetic tests are not even offered yet to patients not in trials specifically for them. Jon.
Greta, August 13, 2004 - Hi all, I broke down and ordered from Amazon.com a used new edition copy of Dr. Marc Silver's book Success With Heart Failure. If you haven't read it, you need to. I wish I had read that book 16 months ago; I think it would have made a big difference in my attitude. You can't beat Jon's site for information but Dr. Silver's book is excellent also.
The Arkansas weather has been so user friendly the last several days, with low humidity and mild temps. It sure doesn't feel like August. The trend is supposed to hold through the weekend and I'm glad. Hubby and I are loading the Harley into the trailer, hooking up to the motorhome, and taking off Saturday morning for the weekend. Both of us could use the R&R. It will be perfect weather to spend the day touring scenery on the motorcyle.
Jon, how are you progressing with your disability evaluation? Heard anything yet? It sounds like the SSA docs need to read Dr. Silver's book. Thanks for the time and energy you have expended to create a place we can all share with each other. God bless you. Blessings, Greta. firstname.lastname@example.org
Jon's note: The review claims worker did not return my last call, so I don't know how it goes.
Darlene's August 13 reply to Darlene's August 12, 2004 - Hi, I'm writing to second Jon's answer to your inquiry. I understand that broadcasters have a block of time to fill with interesting and perhaps even helpful "items" but this can lend itself to the "disease of the week" and "crisis du jour" syndrome. It is a little like me claiming to be a mechanic because I can point out the gas cap on a car with some degree of certainty. I bet your doctor was fit to be tied! Be well, Joanne. email@example.com
Myrtle C's August 13 reply to Gene's August 12, 2004 - Thanks for the input Gene and you also, Jon. I did wonder that I had not read or heard of this before. firstname.lastname@example.org
Giorg, August 13, 2004 - Hi, Is there anybody here that can go jogging with DCM? I tried yesterday after 3 years since diagnosis and I found out that I cannot! Even if I can swim and cycle for more than half an hour without stopping and with no symptoms, when I run I get PVCs and bigeminy after something like 20 seconds. That makes me so sad. I know I would thank God because I am stable and quite well but not being able to run, play tennis, soccer, basketball, etcetera, at 29 years old is depressing. Do you have any suggestions? Is there any hope to go back running someday? email@example.com
David Wilson's August 13 reply to Darlene's August 12, 2004 - Hi, In my case I really need Aldactone (spironolactone). My potassium got too high 2 years ago and my heart doc took me off spironolactone and I got really sick with low potassium and ended up in Club Med. I fired that heart doc and found a heart failure specialist at Barnes-Jewish in St. Louis. It is a lomg way to see a doc for me, but it is worth it.
I went back on spironolactone and since gastric bypass and losing over 100 pounds, I no longer take lisinopril and digitek. They slowed my heart too much and lowered my blood pressure too much. My heart doc says spironolactone does something special to help my heart. He said if my potassium gets too high I should cut the dosage on my spironolactone, not stop it altogether. firstname.lastname@example.org
Charles, August 13, 2004 - Hi, Has anyone tried lowering their blood pressure with the breath control device called "Resperate?" If it does what it claims, I am ready to pop for the $300. I wonder if insurance might cough up some of it, since it is FDA approved. Any thoughts? email@example.com
Roger Hughs' August 13 reply to Doris' August 12, 2004 - Hi Doris, I have treated with and been totally satisfied with Heart Care Midwest, 420 N.E. Glen Oak Ave., Peoria, IL., since May of 1997. I am a CHF patient and have no complaints at all. I wish you well. firstname.lastname@example.org
Joy, August 13, 2004 - Hi, I have been able to make an appointment to see a cardiologist this next Wednesday, August 18th, not in the public system but paying to see a private consultant. As I have said, I do not have health insurance. The initial consultation will, the receptionist tells me, cost $200 New Zealand, with any tests such as an echo being extra. My partner and I are so looking forward to starting on the search for a true diagnosis. I asked the receptionist and also my family doc if this doctor specialised in heart failure and they both thought I was mad!
Now, in order to present in my "true colours" I am thinking that perhaps I should not take my meds for a couple of days beforehand - diuretic and ACE inhibitor. I refuse to take the beta-blocker as a result of my very real fear of having my depression aggravated. Any comments welcomed. Thank you for being there. Joy. email@example.com
Roger's August 13 reply to Darlene's August 12, 2004 - Hi, I didn't see the report but I'm sure that there is a lot of negative about the drugs we take. I was on lipitor for 4 or 5 years and all of a sudden got a spasm (?) where my hips seemed to just tie up. The doctor switched me to Zeita now and all is well. My PCP (an internist) and the cardiologist seem to be on top of everything as far as blood tests. At work they kid me about getting a direct hook-up with the hospital for all the blood I get drawn. firstname.lastname@example.org
Roger's August 13 reply to Sherri's August 12, 2004 - Thank you and thanks to all for the response on this great site. Every one is so helpful. Oh, to just sit down and talk to all of you! We do have a lot to talk about. email@example.com
Renee, August 13, 2004 - Hi everyone, We had started feeling uneasy with my husband's cardiologist, even though he comes highly recommended. He has quit talking to us the way we would like. He also doesn't answer questions straight. To top this off, our attorney sent a questionnaire to be filled out for SS disability. He contradicted himself 4 times in the papers. He thinks that my huband (functional class 3) is totally disabled and shouldn't have above mild exertion, then he fills in a blank saying he can frequently left 30 pounds and 50 pounds occasionally. There were other contradictions!
Has anyone else dealt with this? We're looking into other docs, but how do you know if what you get is better, same, or heaven forbid worse?! Reneew4103@aol.com
Bill's August 13 reply to Darlene's August 12, 2004 - Hi Darlene, I have been on spironolactone/aldactazide 25/25 for 18 years. I am diabetic with heart failure and have had CABG. May I say first that I was not told it would enlarge my breasts but I did learn of it too late. I would think ladies would love this drug for this reason alone? <g> I also know now that stopping the drug does not reduce the enlargement. I was taken off the drug a week ago by my PCP and went from 20mg of Lasix daily to 80mg for shortness of breath. I take K-Dur pills, evidently made for a horse, BID. Coreg, Actos, Cozaar, Lipitor, Zaroxolyn and 60 units of insulin round out my day, plus various and sundry supplements. Bill. firstname.lastname@example.org
Jon's note: About 10% of men in trials got this side effect from spironolactone.
Jon, August 13, 2004 - Howdy-doo everybody, Thanks to everyone who had tips for buying an operating system! It is now under control or will be shortly. :-) When I go to make the switch, I will be formatting and fdisking my hard drives, so it will take awhile to load back up and configure. I'll post a note beforehand so you'll know when The Beat Goes On will be down for a few days. I've got the RAM upgraded now as well. Jon.
Jon, August 14, 2004 - Hi everyone, I have a problem some of you may be able to help me solve. An online group at msn.com has stolen a lot of my content and directly put it on their web page. I am finding it nearly impossible to contact them. Their online support form will not load in either of my browsers and the group in question will not accept e-mails from anyone not part of their group - which I cannot join because my browser won't load their weird pages.
I don't want to waste reader donations paying an attorney to do the contacting. If anyone knows of a phone number or e-mail address that will put me in touch with someone at msn.com or with the groups at msn.com, I would be very grateful. Otherwise, I will just have to spend the money to follow up with a lawyer - yech! Jon.
Alexandra's August 14 reply to Jeff Anderson's August 11, 2004 - Hi, I really hope all goes well for you with your doctors. I think some docs are more interested in numbers than how a person actually feels. I too am on 5 heart meds, as well as anti-depressants, thyroid, anti-anxiety, IBS med, and pain meds. I also just started CoQ10, folic acid, and Omega 3 fatty acid. The pills never seem to end and sometimes I feel like the cure (not really, more like maintenance) is worse than the disease. I keep taking them and hope for the best.
It's funny you said about what you did from age 21 to age 36. I thought the same thing. I did not exactly lead a healthy life style. You should ask your doc if it might be a factor. I did and guess what? He said that I could have led the healthiest life on earth and CHF would still have happened due to scar tissue built up from open-heart surgery in 1980 along with other genetic factors. So, I guess I am glad I had my fun while I could. I wish you all the best and feeling down is just part of the routine. I am glad they have meds for that too! email@example.com
Valerie R, August 14, 2004 - Hi, I just want to say hi to everyone! I just got back from my first vacation in almost 2 years. My doc said I can't leave the country, so we took a trip by plane to Atlantic City to rendezvous with my brother and sister.
We had a great suite that was very inexpensive, so I was able to have breakfast and sometimes lunch there. Eating out was a little hard, and food and water were pretty bad. To me, the water tasted as if it came from a public swimming pool and the food frequently tasted that way too. We finally found a restaurant by following a line; it catered to all diets and the food was great.
I walked at least 5 miles a day if not more on the Boardwalk, which was right outside our building. It was breezy, flat, and not hot. I have never felt healthier. I came back only $200 poorer on my gambling money, which is pretty good for 7 nights and 6 days. Now I'm back to the cardiologist, endocrinologist, opthamologist, and all the other gists. It's good to be back and see the board is still going! firstname.lastname@example.org
Sandy's August 14 reply to James' August 12, 2004 - Hi James, I had to say congratulations on all your good news and on all your hard work to get to the upgraded level of health! I know how much time and energy goes into staying healthy. Here is a smilie for you. :-) email@example.com
Sandy, August 14, 2004 - Hi, I wanted to send my prayers out to all who were touched by Hurricane Charley. I did what I was told and left Clearwater, and guess where I went? Orlando. Yep, and was greeted by 110 mile per hour winds. I hid under the covers in a motel, ready to get into the bath tub if the windows caved in. I thought they would quite a few times. firstname.lastname@example.org
Susan's August 14 reply to David Wilson's August 13, 2004 - Hi, I recently was taken off potassium after 4 years because I became high in potassium blood level. After 2 weeks I was retested and my potassium level is now in the normal range. You got me worried when you said you then got low potassium and ended up in the hospital. So far I am still not on potassium. What symptoms should I be watching for regarding low potassium? Thanks for any assistance. email@example.com