Jon 3-2 Linz update, posts
Ginger's 3-2 reply to Joe L's 2-28 fast heart rate needs doc visit
Joshua's 3-2 reply to Ginger's 2-26 sleep apnea
Ann C 3-2 got pacemaker and dobutamine & more
Tracey C 3-2 I've stopped sneezing, low sodium foods
Frank Smith 3-2 I will be seeing a new cardio doc
Dana J 3-2 has anyone been to Scott & White hospital?
Ginger 3-2 update, hearing our hearts beat & more
William B 3-2 update, CHF turns things upside down
Pat L 3-3 pacemaker possibility, have concerns, questions
Jon's 3-3 reply to Pat L's 3-3 some standard comments
Lori's 3-3 reply toWayne S' 2-26 chronic anemia
Taavi K's 3-3 reply to Ann C's 3-2 heart transplant trade-off
Dana J's 3-3 reply to William B's 3-2 hot versus cold
Jon 3-3 page updates
Barbara P J's 3-5 reply to Ginger's 3-2 pacemaker implant experience
Phyllis W 3-5 ACE inhibitor change - questions
Davida S' 3-5 reply to Joshua's 2-27 spiritual component of illness
Davida S 3-5 seizure-like trances, have questions
Karen K 3-5 update, prayer request, daughter's cancer
Rick 3-5 Coreg experience
Jack's 3-6 reply to Ginger's 3-2 hearing your heart possibilities
Phyllis W 3-6 about earlier post - more info
Joshua's 3-6 reply to Rick's 3-5 Coreg experience & more
Tracey C 3-6 questions - being off meds, mental state & more
Joe L's 3-6 reply to Davida S' 3-5 I had similar symptoms - pulmonary embolisms
Carol 3-6 Vo2max questions
Jon's 3-6 reply to Carol's 3-6 ramblings on this test
Ginger's 3-6 reply to Karen K's 3-5 coping with family misfortunes & more
Sarah F 3-6 will be at Chat Room Thursday
Joshua's 3-6 reply to Tracey C's 3-6 dealing with fear the Joshua way
Thelma 3-6 Coreg experience
Jon 3-6 page updates
Davida S' 3-6 reply to Joe L's 3-6 questions about your experience
Davida S 3-6 does anyone take spironolactone?
Jon's 3-7 reply to David's 2-15 BioZstudies
Kelbert Taylor 3-7 just arrived
Ginger's 3-7 reply to Tracey C's 3-6 being off most heart meds & more
Ginger's 3-7 reply to Sarah's 3-6 hope to see you at chat Thursday
Kathryn's 3-7 reply to Davida S' 3-6 spironolactone (Aldactone) experience
Carol O's 3-7 reply to Jon's 3-6 testing and its relevance
David A's 3-8 reply to Jon's 3-7 thank you for BioZ info
William B 3-8 update, changing perspective on meds
Donna Z's 3-8 reply to Davida S' 3-6 Aldactone experience
Sharon P 3-9 day of reflection for me
Ernest 3-9 has anyone had an EP study?
Karen K 3-9 thanks, update, tests & more
Jon 3-9 any bios out there wanting a home?
Ginger's 3-9 reply to Kelbert's 3-7 glad to see you here
Brenda B H 3-10 seek info on InSynch trial - am scared
Jon's 3-10 reply to Brenda B H's 3-10 one opinion
Cheri S 3-10 intro
Blake 3-10 getting financial help with meds
William B's 3-10 reply to Karen K's 3-9 potassium sparing drugs
Bill B's 3-10 reply to Ernest's 3-9 EP study experience
Liz D's 3-10 reply to Karen K's 3-9 chemotherapy support
Stephanie's 3-10 reply to Thelma's 3-9 Coreg, & have exercise question
Carol O 3-10 test results update
Ginger's 3-10 reply to Jon's 3-9 bios for Who's Who, graphic programs
Jon's 3-10 reply to Ginger's 3-10 bios and graphics programs
Lee R's 3-10 reply to Ernest's 3-9 EP studies & more
Davida S' 3-12 reply to Tracey C's 3-6 stopping meds
Jon 3-12 updated and new pages
Davida S' 3-12 reply to Brenda B H's 3-10 don't rush into anything
Mol 3-12 seek experiences with Coreg side effects
Brenda C 3-12 questions about Pletal, generic is cilostazol
Jon's 3-12 reply to Brenda C's 3-12 this is an inotrope
Rich H's 3-12 reply to Brenda B H's 3-10 about the InSynch trial
Jon's 3-12 reply to Rich H's 3-12 the leads are part of the trial
Cindy 3-12 question about heart picture
Barb L S 3-13 prayer request
Tony 3-13 do changing seasons affect anyone else?
Joe L's 3-13 reply to Davida S' 3-6 pulmonary embolism tests
Shannon T's 3-13 reply to Cindy's 3-12 picture from medical records
Ernest D 3-13 thanks to Bill and Lee, & more
Barb L S 3-13 update, prayer request
Barb L S 3-13 prayer request
Karen K 3-13 update
Anna N 3-13 update, disability interview questions
Bill D's 3-13 reply to Cindy's 3-12 angiogram picture maybe
Maureen Mock's 3-14 reply to Barb L S' 3-13 having hysterectomy while a CHFer
Ginger's 3-14 reply to Anna's 3-13 docs and numbers, update & more
Bill B 3-14 for disability, get an attorney!
Jon 3-15 page updates and additions
Anna N's 3-15 reply to Ginger's 3-14 thank you, more on SSD application
Tom 3-15 a little vent
Liz D 3-15 stress testing experience - what to do?
Jon's 3-15 reply to Liz D's 3-15 get another doc & more
Jon 3-15 warning about meat product
Ben B 3-15 yoo-hoo
Jon, March 2, 2001 - Hi guys, I am a bit slow right now. Posts will make it eventually, though. :-) I wanted to exert my parental bragging rights for a moment. My daughter just received notice that she has 4 years of tuition paid in full by scholarship from one of her top 3 choice private universities. The top 4 applicants at that university receive such a scholarship each year and she's one of the four. The big relief is that now we know she can actually make it through school for sure. Room and board still have to be covered but we're working on that now through other scholarships.
I'm in the middle of sorting out taxes and fighting the local post office - which made a stupid and very large mistake that is costing them a great deal of "face" so I'm sort of stressed out. Public servants aren't what they used to be, that's for sure! I'll try to get posts up to date but make no promises the remainder of this week. Gotta go to the tax man this evening. My brain hurts. Jon.
Ginger's March 2 reply to Joe L's February 28, 2001 - Hi Joe, Call your doc. That is not normal. One day in the doc's office my stepdad's heart rate was 156. The doc sent him immediately to the ER. The cardiologist looked at him and told him a heart rate that high was unacceptable and my stepdad was put on verapamil right then. He has been on it ever since. If I had a heart rate that high after just walking up a flight of stairs I would go to the ER. So in my opinion you need to call your doc. It's not something to play around with. Hugs, Ginger. firstname.lastname@example.org
Joshua's March 2 reply to Ginger's February 26, 2001 - Hi, Sleep apnea can often be cured. I had it real bad and a laser surgery reducing the size of the ulva in my throat did the trick. It was inexpensive, relatively painless, and worked for me. email@example.com Jon's note: Joshua included an Url but it was "broken" so I didn't include it
Ann C, March 2, 2001 - Hello Everyone, This is just an update on my condition. I have just gotten back from my heart transplant evaluation, only to be the proud owner of a pacemaker and a Hickman catheter that was installed to put me on a dobutamine drip. I am now awaiting the decision of the committee on my transplant acceptance. I was told I might have to be more ill since I have been given the ability to go home and resume "normal" activity. I guess that means I am still able to sit up. I would be happy to answer anyone's questions about my pacer or my IV dobutamine treatments. I am not a doctor but I can give you my experience. Transplant is not a road easily traveled. Explained quite simply, it is someone trading their bad heart for another set of problems but as a friend told me, "It sure beats dying." I would love to talk if anyone would like to do so. I do better when I can talk instead of keep it bottled up, Ann C. firstname.lastname@example.org
Tracey C, March 2, 2001 - Hi Everyone, It was brought to my attention by my husband that I rarely sneeze anymore. I realized this is true. I literally used to sneeze in multiples of more than 10 in a row many times a day. I can only assume that one of the meds must be giving me this welcome side effect. Has anyone else experienced this?
Also, I found low sodium Canadian Bacon at Trader Joe's. They say it's new but I've only been able to get it once because it's always sold out. I've also noticed that Ralph's now carries some of the Featherweight products and have Hormel canned chicken that has - I believe - 40mg for the whole can. Take care everyone, Tracey C. email@example.com
Frank Smith, March 2, 2001 - Hello Everybody, I just moved my residence from Costa Mesa, California to Carlsbad, Calaifornia. One reason among many was to be closer to the UCSD Cardiomyopathy and CHF clinic in the Hillcrest area of San Diego, about 40 miles south of Carlsbad. I have an appointment with Dr. Barry Greenberg, the Medical Director, and I am anxious to learn if there truly is a difference between a cardiologist and a CHF specialist. ;-) As soon as I am evaluated by Dr Greenberg, I will file a report here at Jon's Place. My appointment is 3/28. Wish me luck. Later, Frank. firstname.lastname@example.org
Dana J, March 2, 2001 - Hi, Has anyone heard of a hospital located in Temple, Texas, called Scott and White? I'm considering going there for more testing. Since I have yet to find a CHF specialist in my area and I am not satisfied with the care I'm receiving from my regular doc, I think the trip may be worth it. I would appreciate hearing from anyone who has had an experience with them, good or bad. I think this may be a good place to get my second opinion on the pacemaker, if nothing else. Thanks, Dana. email@example.com
Ginger, March 2, 2001 - Hi, This is just a quick update. My son Erik will have to sleep with a CPAP. He was put on a med for his severe sleep apnea too. I think 19 is young for this but it is what it is. His stepdad Walt had an EP study and will have an ICD implanted today. His doc said there was more then one dangerous arrhythmia that the EPS put him into, and that he goes in and out of a-fib.
I need some input of recovery time and things like that so I know what I am doing. He will get out Saturday if all goes well and they can get the fluid off his lungs. He is still in mild CHF. Is things like no microwaves ovens really true, that you can't use? I am sure they will tell us all this at the hospital. At least I hope they do.
Oh yeah, this came up awhile back. We were talking about waking up or lying down and being able to hear our hearts beat in our ears. Well, the EP doc told me if that happens and you are also SOB, then it is probably a little fluid on the lungs. Interesting, huh? Something really strange came up about that too. I was talking to my older sister (the one I am not close to) about being able to hear your heart beat sometimes and also feeling it at times if I lie on my left side. She said she gets both at times. Supposedly she has nothing wrong with her heart, although I doubt it's ever been checked but if she has a normal heart why would she have these symptoms, which I thought just us heart people got?b I found this really interesting. Either she has problems but doesn't know it or it isn't just heart patients that get those symptoms. I wonder which it is. If I ever find out I will let you know! :-) Stay well, y'all. Hugs and prayers, Ginger. firstname.lastname@example.org
William B, March 2, 2001 - Hi, How does cold affect you guys? My wife freezes with just a little drop in temperature. I feel like I am stoking a coal furnace. I am not quite that bad but overall my body temperture has increased and I do not get that cold feeling like my wife does. I am taking 7.5mg warfarin, Lasix, Capoten and K-dur potassium. Several other people I talked to seem to be more affected by cold. Boy, CHF really makes some weird stuff happen. I think I am going to have to have someone come in just to open caps off jars. What's amazing to me is that simple tasks like that are problems now. What's really bad is that my wife can open some that I cannot open now. We trying to figure how to train our Labrador to open bottle caps. <g> Thanks. email@example.com
Pat L, March 3, 2001 - Hi Jon and everyone, In January at my regular cardio doc appointment, he
recommended I see a colleague of his at the same practice but a different office about getting a pacemaker. He said it might make me feel better. I agreed to the appointment and went 2 days ago, after reading as much as I could about biventricular pacemakers on this site and others. After a 2 1/2 hour wait in the waiting room, a nurse took me in for an EKG, then after another 30 minute wait the new doc came in.
He told me all about this new pacemaker and said it might make me feel better. He eventually said I would go into the hospital on a Monday and have an EP study first to see if they could induce an abnormality the defibrillator would correct. This would be justification for implanting the pacemaker, which would occur the next day with an additional day in the hospital to recuperate. If they couldn't cause the rhythm abnormality I wouldn't get the pacer implanted. If I did have the abnormality occur and got the pacer implanted, it might not be operational for 6 months. At this point I asked if this device was FDA approved for heart failure. I got what I think was a very evasive answer. He said it has been FDA approved as an investigational drug.
I asked if he knew if my HMO would pay for it and he said Medicare has agreed to pay for it so my HMO should. I said I wanted to talk this over with my regular cardiologist and was told I should schedule the procedure that day, as they were scheduling a month down the road. I felt like I was being railroaded. I would appreciate feedback from anyone. I am very dubious about having this procedure, especially about having the EP study first, which sounds an awful lot like a heart cath. Thanks, Pat L. firstname.lastname@example.org
Jon's March 3 reply to Pat L's March 3, 2001 - Hi Pat, I have no idea if you are being unfairly pressured or not, but here are some standard concepts that may or may not help in such a decision:
First, how badly do you believe you need some symptom relief? This helps you know if the time line is okay. If you're not desperate for relief but are not doing too well either, maybe you should schedule the procedure and then make a point to talk to your own CHF doc before actually having the procedure done, even though it is already scheduled.
If you're doing pretty well and hope such a pacer will get you back to near-normal functioning, then this is pretty elective and perhaps it would be best to talk to your own CHF doc before even scheduling the procedure.
The EPS is a heart cath which will "jolt" different locations in your heart to try and force it into an arrhythmia. If certain arrhythmias can be induced this way, it may indicate possible risk for such an arrhythmia to happen naturally and can also guide your treatment.
Certain biventricular pacers are approved by the FDA for trials only - not as an approved, or "standard" treatment - so I think he gave you an honest answer, even though he did not properly explain it.
One caution: Be sure about the exact device you will get - otherwise there is no way for you to read up on it! There are biventricular pacers that also include a defibrillator and these can impact your life differently than just a pacemaker alone. Just be sure you get precise answers and some written literature, as well as a contact number for the device manufacturer's representative before actually having the procedure. Remember that you can always cancel the procedure between now and then if you decide against it.
In other words, if you are not comfortable with the deal, don't do it. However, since you might benefit, be sure to look into it before saying no either. If this doctor does not suit you, see another one who is in a pacers-for-CHF trial and maybe he will be a better match for you in the doctor-patient relationship and that might clinch the go-ahead for you. Jon.
Lori's March 3 reply to Wayne S' February 26, 2001 - Hi, I became severely anemic after my open heart surgery. The doctors told me it was from being on the heart-lung bypass machine for so long during surgery. That was in April of 1999 and I'm still on iron therapy. I also take 500mg vitamin C about half an hour before I take my iron since this helps the iron absorb into your bloodstream better, or so I am told. Good luck and best wishes. email@example.com
Taavi K's March 3 reply to Ann C's March 2, 2001 - Hi, Regarding the trade-offs involved in a heart transplant, there is saying in our transplant support group that you are trading death for a lifetime of medical management. It's a good trade! firstname.lastname@example.org
Dana J's March 3 reply to William B's March 2, 2001 - Hi William, I used to be extremely hot natured but now I constantly freeze. I have had a low grade temperature almost daily for several months, which I believe is the cause of my problems. If it isn't 110 degrees outside, my teeth are chattering. Dana. email@example.com
Jon, March 3, 2001 - Hi everyone, Well now that I've seen the tax man, my brain and my wallet hurt! Anyhow, these pages on my site have been updated - they are not all heart failure-related:
Barbara P J's March 5 reply to Ginger's March 2, 2001 - Hi, When they told me I needed a pacemaker last April, the very next words spoken were "and yes, you can use a microwave and cell phone." All I needed to do was use the cell phone on the opposite side of my body from the pacemaker. I came home the next day and other than no driving till the next checkup and no lifting of my left arm (the side the pacemaker was implanted) above my shoulder, I had no restrictions. In fact, I went shopping straight from the hospital - something I had not done in a long while - and then to dinner! Tweaky has done well for me and while it did not "cure" my heart, it sure helped. firstname.lastname@example.org
Phyllis W, March 5, 2001 - Hi everyone, I have been having trouble getting my prescription for Capoten filled unless it is generic. Since I had trouble with the generic form, my cardiologist changed me to another ACE inhibitor. I am now taking 20mg Prinivil twice a day and my blood pressure went after the third day. (Jon's note - It dosn't say whether BP went up or down) Has anyone else had this problem with Prinivil? I hoping my body will adjust to this after few days. Thanks. email@example.com
Davida S' March 5 reply to Joshua's February 27, 2001 - Hi Joshua, Great message. Every now and then I need a lift. My husband has heart failure. His EF is 35-40% and you do more than he does. In my heart I believe you can do this because only a part of this ailment is physical and another part is mental. It is your mental and spiritual strength that has lifted you physically. You say you don't understand why your EF has not gone up but you do understand that in this case test results don't mimic the life God has blessed you with. I just read your post to my husband and hope that it will encourage him to strengthen his relationship with God. Through God all things are possible and through Him all good things come. firstname.lastname@example.org
Davida S, March 5, 2001 - Hi everyone, I need your help and lots of it. My husband, who has CHF, and myself need your prayers. I need prayers for peace of mind. The presciption drug company Merck Medco a few weeks back took my husband off Avapro and put him on Cozaar, which Merck manufactures. My husband was on it for 4 days before he got hit with 2 rough dizzy spells while walking. Then last night Friday, which would make 9 days on the med, he was sitting up in bed with his knees slightly bent and his hands resting on his legs. I was sitting with my back to him. I noticed some movement on the bed and turned around and he was sitting in the same postion but shaking. I called to him and rested my hand on his back several times. He answered me after about 30-45 seconds, saying he was okay.
I had him lie down and I took his blood pressure, which was 130/61 with pulse of 64. The first number was a little high for Dan but the second number and the heart rate were about right. This is similar to episodes that happened last summer which turned into seizure-like activity and stiff trances. The result of that 2 week stay was taking him off Coreg and adding amiodarone because during a trance his heart rate hit 153 bpm.
I asked Dan what he remembered he barely remembers it. He said he felt fluttering in his chest or the skip-a-beat sensation. His current meds are 50mg Cozaar, 200mg amiodarone, aspirin and 20mg Lasix, all taken once a day. He also takes Coenzyme Q10 and Heart Right vitamins by Theragram. His current EF is 35-40% up from 10% a year ago. Does anyone have an idea about what is going on? He has a visit to his CHF specialist on Tuesday and I am thinking about requesting he go back on Avapro in case this is a side effect or allergic reaction similiar to what was happening with Coreg. It is very frighting to see.
Could the amiadarone not be working? Could it be low potassium? He has blood work done every 3 months on his visits. What are the little pains he feels occasionally in his chest? He does not have coronary artery disease and all his arteries are clear, and his cholesterol is great. I am asking everyone here because I know you are the patients and you don't always communicate everything to your love ones. Thanks. email@example.com
Karen K, March 5, 2001 - Hello to All, I'm just checking in. My life appears to be in a shambles at this point. My husband was diagnosed with MS in August. He is currently on Beta Seron and a medication for fatigue which has really worked well for him. I asked if he would share, but he is being quite stingy! <g>
I spent most of last week at Mayo Clinic with our 35 year old daughter who has breast cancer. She will return on Tuesday for a bronchoscopy since a CAT scan showed "something" in the area of her trachea. The oncologist says it could be a duplication cyst but only a bronchoscopy will determine what it is. She is classed at 2A for her cancer but if the bronchoscopy shows what they see is a lymph node, her class will become 4. I am strong for her but having a difficult time holding myself together.
We are also in the process of building a house. My husband is currently sitting at the kitchen table drawing plans which he will give to a colleague who does computer aided drafting and he will transfer the information into his program and the plans will then be generated. We hope to have a construction loan and maybe a hole in the ground within the next 2 weeks.
I was at the University of Iowa hospital early last week and passed on all of my cardiac related records to the nurse for the doctor who heads the CHF clinic. The nurse called on Friday and left a message that I have an initial appointment scheduled for March 13. I truly thought they would not see me given the fact that I am relatively stable with the exception of one hospitalization in 10 years and low magnesium for which I take a supplement, and now high potassium which my docs in town here are trying to control by diet. You would be totally amazed at what foods contain high levels of potassium. This is an adventure in and of itself.
Please continue with prayers for my daughter and her family. She is an awesome person, married with two children ages 7 and 9. She teaches K-2 special education. Also, I need to ask that you pray for me that I can be strong both emotionally and physically. I did fairly well last week considering the circumstances but am fearful that my body is going to eventually react negatively and I have no time for this. Thanks in advance, Karen. firstname.lastname@example.org
Rick, March 5, 2001 - Hi, I started Coreg in January of this year. I started at the lowest dose and doubled it every week. I felt a little tired for about 2 days after going up each level but then felt fine. I have been at 50mg twice a day since the end of January and I feel great. I walk on the treadmill twice a day at 2 mph for 30 minutes. Before I started Coreg my EF was 15% by echo and 28% by MUGA. They will give me another MUGA after I have been on this dose of Coreg for 3 months. I was scared before starting Coreg that it would make me feel bad but I must say I feel good all the time and hope to go back to work soon. I just wanted to let you know my experience with Coreg. Thanks. email@example.com
Jack's March 6 reply to Ginger's March 2, 2001 - Yo Ginger and everybody else who hears their heart from time to time. You guys are asking the wrong doctor about hearing your heart. You should be asking your ear doctor. You could have a hearing problem, either temporary because of the position of your head or something that needs to be remedied. Your eustachian tube runs from your ear-drum to the rear of your mouth. It also runs right beside the carotid artery. If you put your head a certain way it makes them much closer together and the heartbeat goes straight to your eardrum. Also, certain hearing problems make the noises happening inside your head louder than the noises on the outside. Sometimes just popping your ears (like a diver) will make you stop hearing your heart. firstname.lastname@example.org
Phyllis W, March 6, 2001 - Hi, I failed to say whether my blood pressure went up or down due to the change in ACE inhibitor on my earlier post. My blood pressure went way down. I should proof read my posts before I send them on. email@example.com
Joshua's March 6 reply to Rick's March 5, 2001 - Hi My Friends, I've been on 3.12mg of Coreg now for about 2 weeks. Years ago when I first got sick, my doc put me on 25mg twice a day. I felt that the cure was worse than the disease. My CHF specialist in Houston started me out on the present dose and I can't tell the difference. I am hoping that it eventually will boost my EF up from 19%. We'll see. The really tough thing though, is that down here in Loweezyana it is cray dad time. They're boiled in salty water with Zatarains seasoning. Mmmmmmm good! But of course, y'all know I won't eat any unless I want to swell up like a blimpy! God bless you all and remember, any person is only the sum total of their thoughts so think good! firstname.lastname@example.org
Tracey C, March 6, 2001 - Hi, If anyone has been taken off meds except an ACE inhibitor, could you please let me know how you've been doing? I'd appreciate it. I've had a rough couple of weeks and feel as though it's been a while since I felt good. I hate complaining and often feel guilty for doing so but even though my EF is higher, it just doesn't mean that I feel good. I've been having an overall bad feeling lately.
Today something new happened and scared me to death. I was just sitting and reading when my heart started pounding in what felt like my upper stomach area all the way to my throat. I completely panicked and when it finally stopped my pulse was going pretty quick. The doctor says I had a few supraventricular ectopic beat on my last holter but I have no idea what that means. He didn't seem concerned. However, this episode still terrifed me.
Also, how long did it take for any of you to feel like living a normal life again? I used to love Vegas and now I just canceled a scheduled trip there because I can't stand the thought of leaving my home. I'm afraid of feeling bad when I get there or getting my frequent meds diarrhea on the drive. I'm just not like this and can't seem to get back mentally what I had before all this. Finally, an odd question but do any of you get symptoms when you have to have a bowel movement? My heart seems to race and pound. Thanks so much for letting me talk and God bless all of you, Tracey. email@example.com
Joe L's March 6 reply to Davida S' March 5, 2001 - Hi, I had similar symptoms last year. After all kinds of neurological studies it turned out I was having transient cerebral ischemia (low oxygen level reaching my brain) as a result of small blood clots (pulmonary embolisms) passing through the heart and into my lungs. By the time the diagnosis was made I had numerous pulmonary embolisms in the lower lungs on both sides. They then put in a venous filter in my abdomen and I have not had any symptoms since then. The symptoms you describe sound extremely similar to mine so you may want to ask the docs about this. Good luck and God bless, Joe. JTLucido@aol.com
Carol, March 6, 2001 - Hi all, I have a question for anyone about the results of a Vo2max stress test. Jon, I read <your description of this test and you said that results can vary from test to test, and even from the time of the stress test. I have this stress test twice every year and I always thought that the longer time that I was on the treadmill the higher Vo2 max number I would receive. Even though I try as hard as I can to stay on the treadmill as long as I can, I usually have the same results of a Vo2max number of 20% with a 16 minute test. Since results can vary from test to test, would it be possible for me to get the same numbers even if I didn't stay on the treadmill for 16 minutes? I don't feel as strong overall as I did when I last took this test 7 months ago, and I am concerned that it won't be possible for me to get a Vo2max number of 20% now. I am scheduled to have this next test this Thursday morning, so I would appreciate any input about this test. Thanks much, Carol, EF 17%. firstname.lastname@example.org
Jon's March 6 reply to Carol's March 6, 2001 - Hi Carol, You can be fairly fit and get a worse Vo2max result than someone terribly out of shape or you can be terribly out of shape and get a Vo2max result better than someone who is fit. A broken bodily system for using oxygen to make energy cannot do as well as a body with a working mechanism for doing so regardless of other factors such as regular exercising, proper body weight or physical strength.
The Vo2max test is not a measure of fitness per se; it measures how well your body uses the oxygen it draws in, regardless of how high or low that oxygen level coming in currently is or how well conditioned your muscles are. Being fit through regular exercise really does help but it doesn't define the test result.
A Vo2max of 20% is pretty good for a CHFer. That's what my last result was, which was up from 13.5% the test before, even though I actually feel worse now. Go figure. This just points up the complexity of factors that are involved in CHF. The medical community is just starting to realize that any one "model" of heart failure is not sufficient to explain the huge number of factors at play in our condition and abilities.
Heart failure involves our skeletal muscles, our heart, our blood vessels and their linings, our hormonal systems, our nervous system, and more. This is one reason why we must see a CHF specialist to get proper treatment. Regular doctors and cardiologists do not yet grasp how complex this illness is. They say if your numbers are good, you are good and we all know better, don't we? ;-)
The Vo2max test is not a single perfect indicator of how seriously ill we are any more than an EF measurement is an absolute predictor of how well we function. It's just one piece of information among many to take into account when looking at a real live CHF patient.
With that said, I personally think - and my CHF doc and Marc Silver agree in principle - the Vo2max (mVo2) test result is more likely to indicate how we are really doing than any other "standard" test. However, toss it into the mix with echo, MUGA, cath results, 6-minute walk test, edema, SOB, EKG, heart sounds, BP, neck vein size and other factors that a good CHF specialist always considers and you get a far more accurate picture than any one test can give.
My point in all this rambling is that many factors affect the results of this test. If one aspect of your body's functioning has improved but another has deteriorated, perhaps your test result will not seem to reflect how you really feel physically. That doesn't make the test invalid. It still measures how your body uses it's oxygen supply. Please note that the test does not measure how good that oxygen supply is to start with, though!
My own doc once told me that I walked a long time on a tough incline during the Vo2max test and still got a crummy result because my body was fit from regular exercising but unhealthy none the less. I'm paraphrasing him but that's the gist of it. I hope all this rambling isn't just confusing. I'm not sure how to give information on some subjects in an easy to understand way so I just say a lot and hope some of it strikes home. <g>
Remember that a Vo2max of 14% or less is necessary to get onto most heart transplant waiting lists. I cannot tell you what a "normal" test result number is for this test. I have talked with cardiopulmonary lab techs, nurses, cardiologists, cardiothoracic surgeons, pulmonologists, CHF specialists of international reputation and more on this subject and the answers I get vary soooo widely I am forced to conclude that there is no standardized scale for this test result for a healthy, fit person. Jon.
Ginger's March 6 reply to Karen K's March 5, 2001 - Hi Karen, I think we have briefly talked before. Watching someone we love go through a serious life threatening ordeal is hard, to say the least. However, I do believe that watching your child go through it is the worst thing there is. It sounds like she has a doctor who is very much on the ball though.
I do believe you can be there for her and be strong emotionally and physically but please be careful with the physical part. I have had to deal with a lot of emotional ups and downs, and pain in my life recently; If you don't pay attention to the things your body tells you, like your fatigue, it can sneak up on you and affect your own health. I know this from experience. Please watch your own health during this very trying time you are going through.
You and your daughter definitely have mine and everyone else's prayers. It takes a special person to teach school these days, especially a special education class. That shows her own love for people. The only thing I know for positive that has high potassium is most salt substitutes and bananas so it would definitely be a learning experience for me. Anyhow, just please remember to watch out for yourself during all this. Hugs and prayers, Ginger. email@example.com
Sarah F, March 6, 2001 - Hi everyone, This is just a friendly reminder that I will be in the CHF Chat room this Thursday at 7:00 PM EST. All are welcome, especially new folks. See you then, Sarah. firstname.lastname@example.org
Joshua's March 6 reply to Tracey C's March 6, 2001 - Hi Gang, It's me again, just to remind all my CHF friends to be aware of the "Fear Factor." I think the scale is from 1 to 5. If you are a 5, you are unenlightened. If you are a 4 you never had any spiritual guidance. Three means you have had some spiritual guidance but never any real pain. Two means you are basically a spiritual person, you totally believe in Jesus Christ but your physical problems on this plane dominate your thought processes and you're having a rough time physically and mentally. If you are a one, it means you know that God and Christ are holding you in their hands, that if you don't survive physically, why then, you will be walking with them. Knowing this is to not know fear. We are all blessed in that we have the ability to turn our backs on fear and face the light! Blessings and prayers to all. email@example.com
Thelma, March 6, 2001 - Hi, From what I've read on this board, many of us are starting new with Coreg. It's nice to hear an update on how everyone is doing. As you may remember, my first month went great and I felt better than ever so my CHF doc bumped me up from 12.5mg to 25mg twice a day. He has me start out by only increasing the night-time dose for a week, then increase the morning dose. Oh boy, for 3 days after the increase I had that famous "hit the wall" feeling and every muscle ached. Thank goodness I was off work since I had to spend most of my days off in bed. Now I've tweaked down to 18.75mg. Adapting to these meds can be brutal. I'm still going to keep trying to bump up the dose, though. Hang in there folks! Thelma. firstname.lastname@example.org
Jon, March 6, 2001 - Hi everyone, The following pages on my site have been updated:
PS. Women who take Coumadin should read www.intelihealth.com/IH/ihtIH/EMIHC000/333/343/313074.html. Jon.
Davida S' March 6 reply to Joe L's March 6, 2001 - Hi Joe, How did they finally diagnose the probem? What test did they use? Is his filter permanent? It sounds scary but our doctor is stumped. Today he told Dan he will give him a monitor to wear for a month or two. This monitor will come in the mail with instructions. This sounds like something new to me unless it's a holter monitor. Who knows? email@example.com
Davida S, March 6, 2001 - Hi, The doctor started my husband on a new med in a generic form called spironolactone. He indicated that studies overseas have indicated that this drug may assist in making the heart stronger and improve symptoms of CHF. Does anyone among you take this drug and what has been your experience with side effects? One side effect may be an increase in breast size in males. My husband is a little leery of such a side affect. I am doing all I can to refrain from the obvious jokes. firstname.lastname@example.org
Jon's note: Don't forget about searching this site here!
Jon's March 7 reply to David's February 15, 2001 - Hi David, My CHF doc has been looking into BioZ testing in real-life practice and now has enough info to send me this:
"BioZ is probably useful in managing a patient over time with a series of BioZ studies to compare to each other. There is reasonable correlation with cath, but using a series of BioZ studies is more useful than comparing one type test (results) to another."
Kelbert Taylor, March 7, 2001 - Hi Jon, I just found out about the message board. Thanks! email@example.com
Ginger's March 7 reply to Tracey C's March 6, 2001 - Hi Tracy, I have been taken off all meds except for an ACE inhibitor and when someone asked me how I am, the first thought that comes to mind is tired. I had an EF of 55% but then they dropped all meds except the ACE inhibitor, keeping it at 5mg daily. I dropped down to an EF of 40 to 45%. They put my ACE inhibitor way back up but added no other meds.
Still, every person is different. Some may do okay off meds except for the ACE inhibitor. Don't go by what I am going through though because I am seriously considering a cardiologist change. After 3 years I am questioning his judgement and things that are going on, so when I get time I may see what CHF clinics are in my insurance book. My cardiologist is not a CHF specialist as far as I know; I never really asked. I do know that I am the youngest patient he has.
Tracy, I have been off all meds except the ACE inhibitor since December. Jack, I never thought of an ear problem and I bet most people that can hear their heart beat like we talked about hasn't either, including my sister. Thanks, I will ask about that. I hope you're doing better and feeling better. :-) Stay well, ya'll. Hugs and prayers, Ginger.
PS. Tracey, I do also take Lipitor but that is not exactly a CHF med. firstname.lastname@example.org
Ginger's March 7 reply to Sarah's March 6, 2001 - Hi Sarah, Nice to see ya! <g> I will try to be at your chat if you leave me an ICQ Thursday and remind me, even if I am offline when ya send it. Okay? I will forget by then. I hope to see a lot of you there.
Anyone I owe e-mail to will get it shortly! Just don't ask me to define shortly! <lol> Ginger. email@example.com
Kathryn's March 7 reply to Davida S' March 6, 2001 - Hi Davida, My 27 year old son has CHF and has been on 25mg spironolactone a day at bed time for the last year. The side effect he developed was not so much breast enlargement, but breast and nipple tenderness. It got so bad that he was having difficulty wearing clothing. After the last visit with his cardiologist, they agreed to take him off it. He has been off of it for about a month now, and his symptoms are still troublesome. Our pharmacist said that this drug takes a while to get out of the system. We are still waiting. He has had no physical ill effects from withdrawal. Good luck, Kathryn. Kathryncole@hotmail.com
Jon's note: It took almost 6 months for this to go away after I stopped Aldactone and digoxin (which can give the same side effect)
Carol O's March 7 reply to Jon's March 6, 2001 - Hi all, Jon, thank you so much for your detailed explanation of the oxygen consumption stress test. Your rambling made a lot of sense and I appreciate your explanation of how to interpret the results of this test. My doctor - like Marc Silver - also believes that the Vo2max test is a much better indicator of how CHF patients are really doing than other tests. He always compares the test results from test to test and he wants the number to remain constant or increase rather than start to decline.
However, even more important to my doctor than any number is how I tell him I am feeling. He always asks me a lot of questions about how far I can walk, how active I am, and how I am feeling. Even though I know that one test result number is not the most important, it is hard for me not to get worried and anxious about doing well on a test like this stress test. Your explanation of what the Vo2max test measures and how to interpret the results has helped to calm my fears, and I thank you for that. I have to have an echo, <stress test and a MUGA tomorrow, and I will be so glad when the day is over! Best wishes, Carol O. firstname.lastname@example.org
David A's March 8 reply to Jon's March 6, 2001 - Hi Jon, Thanks so much for you and your CHF doctor's information regarding the BioZ testing. It is very timely too. I return to my CHF doctor tomorrow for another BioZ test to see if there is any improvement in my cardiac output after starting Cozaar two weeks ago. So far Cozaar has not caused my potassium to elevate. Thank you and best regards to all. DEZEN@worldnet.att.net
William B, March 8, 2001 - Hi, From a preliminary visit with a doctor at UAB's Kirklin Heart Center, the tests I was given were complete and thorough. He wanted a release to get original film so his team of doctors and surgeons can review films for actual damage to muscle to see if any damage could be helped by additional blood supply. He also added baby aspirin, spironolactone and digoxin to the regimen of pills I was already taking. He seems to think that in taking Coreg the benefits outweigh the bad. His main response was that if the new medicine creates a response that could not be tolerated I could stop taking it. I never looked at it this way: that trying anything that might help is worth the test and then if it creates unbearable side effects stop taking it. I have always been one to not take any medicine longer than needed. I guess that looking at a life time of taking medicine is a big advancement for me. I guess the realization that I am not taking medicine to get well or over something but I am taking medicine just to keep the status quo. Thanks for letting me vent a little. email@example.com
Donna Z's March 8 reply to Davida S' March 6, 2001 - Hi, I am on Aldactone and aside from the fact that my blood sugars are elevated I have not had a problem. As for the blood sugars, it could be a result of Coreg but it seemed to get worse when Aldactone was added to my meds. My CHF specialist thinks the benefits much outweigh the risks. firstname.lastname@example.org
Sharon P, March 9, 2001 - Hi, Today has been a day of reflection for me. Thirty years ago today, my father, at the age of 48, passed away of cardiomyopathy after a 3 year illness. While I am not happy that he "shared" this with me, I am grateful that I live in an age where medical treatment has progressed so substantially. I'm grateful that after 3½ years with DCM and an ICD I lead a good and active life. For this I give thanks to God. Blessings, Sharon P. email@example.com
Ernest, March 9, 2001 - Hi to all, My cardio doc is sending me to an arrhythmia specialist for an EP study. Thanks to Jon and his forum I know what that is but I am still a little nervous about having it done since even an angiogram makes my heart beat funny. If anyone out there who has had one could tell me what to expect, it would help me a lot to know. Thanks to all, Ernest. firstname.lastname@example.org
Karen K, March 9, 2001 - Hello Again to Everyone, I want to thank all of you who responded to my post regarding my daughter. She is going to Iowa City today to see an oncologist and decide which of the trials she will start. I'm thinking she will begin her chemo treatments next week. She is overwhelmed with the support she is receiving; Not only a lot of prayer but folks who are providing them with meals. She says she doesn't have to cook until June (and I think it will go further than that).
The pulmonologist we saw at Mayo doesn't believe that what was seen on the CAT scan is a malignancy but rather a cyst that is congenital (called a foregut duplication cyst). The contrast material used in the CAT scan did not go to the cyst, which indicates to him that it has no blood vessels. Of course, I did a Net search and it sounds as though he could be right on the money.
Friday is my day off work; I try to catch up on paperwork and the like, and I have a ton of it. Next Tuesday I will be seen at the CHF clinic at the University of Iowa. I received a letter yesterday confirming the appointment and it stated that all tests may not be completed in one day. Luckily we are less than an hour's drive from Iowa City so I can go back quite easily although I have my work to deal with also. Since I manage a church office and it is Lent, I have extra work at this time of year because of Lenten services.
I do have one comment regarding spironolactone (Aldactone). In combination with Lasix, It is what I believe has caused an elevated potassium level in me. At one time I took 40mg of Lasix. Approximately a year ago it was changed to 20mg and 25mg of spironalactone. I also now take additional magnesium. When I was on Lasix alone, I never had low potassium as some folks experience. It will be interesting to hear what the University of Iowa has to say about my meds. I'm actually looking forward to the appointment. I've had cardiomyopathy for 10 years now and only saw a cardiologist once and he just didn't have any bedside manner so I opted to stay with my doctor of internal medicine. I've never had some of the tests you folks discuss. I've only had MUGA scans and echocardiograms. I also had a cardiac cath when I was first diagnosed.
Thanks for all of your kind thoughts and prayers, Karen. email@example.com
Jon, March 9, 2001 - Hi everyone, I know I'm not exactly speedy getting things done but I haven't seen a new bio in a long time. Does anyone want to share their story? Just e-mail it to me with any pics you want used. I can take it from there. I have often thought of eliminating Who's Who but judging from the page views in my server logs, it's quite a popular stop on my site. Jon.
Ginger's March 9 reply to Kelbert's March 7, 2001 - Hi Kelbert and welcome to Jon's Place. I am glad to see you here. At least I give good directions if nothing else. <g> Make sure you read The Manual. Stay well. Hugs and prayers, Ginger. firstname.lastname@example.org
Brenda B H, March 10, 2001 - Hey Guys, I'm scheduled to go into the hospital Monday. My dox have really given me the bum's rush - I feel like they want to get me in there and do this before I think about it too much and change my mind. The trial is called InSynch, a pacemaker with a third wire that goes to the opposite side of the heart so that the two sides are synchronized into beating at the same time. The objective is to lessen symptoms of fatigue and SOB. There will be no benefit to the heart mechanically, just to symptoms, and that's just a maybe.
I am at my all time worst as far as quality of life goes but I already have a pacemaker/ICD in my left chest that was so badly botched by the surgeon that he had to call in 2 dox to help him (including their transplant specialist). The procedure took 3 hours instead of the expected 20 minutes, and the surgeon jauntily told my son that I had set a new indoor record for the most difficult insertion and for being closest to death without actually dying. He was a real peach (not). This time I have a new team of dox, including a CHF specialist, who say they know what they are doing more than the others did.
They will be leaving in the device I have and putting the new one on the other side of my chest because there is too much scar tissue around the first one to just go in and add a third wire to the two already there. To make a very long story short, I'm scared. Does anyone know about this trial? If anyone has had it, or knows someone who has had it, please tell me what you think or experienced. You all are my experts. I trust your opinions because we are fighting the same fight. Thank you so much in advance, and may God's peace be with you, Brenda B. H. in Kentucky. email@example.com
Jon's March 10 reply to Brenda B H's March 10, 2001 - Hi, From a very quick check into the text articles here, I find that "Dr. Veerichetty Kadhiresan said, 'Maximum QRS duration may be used to select patients more likely to benefit from VRT. Benefit was best predicted by a maximum QRS duration of 155ms." I assume you have had this carefully measured and fall into that category. Much more info (although not real-life patient accounts) can be found in those text articles and at the ICDs & More page.
I am not you so this may not apply at all, but if I was scared to go into a trial, especially requiring an invasive procedure like a pacer implant, I just wouldn't do it. If I thought I was being rushed into something elective by a doctor, I'd ask him straight out why he was in such a hurry. I would tell him I wanted time to look into it and think it over. If he's a good doctor, he won't mind at all. If he does mind, he must have other motives for getting me involved or he is not overly concerned with my perceptions of my own healthcare treatment. In that case, I'd get a different doctor - now. Remember that this is your life! At the end of the day you have to live with the results of these decisions - good or bad - but he gets to go home and forget about it. Jon.
Cheri S, March 10, 2001 - Hello everyone, I have been reading the forum and all the information that this site contains. I finally got up enough courage to visit the chat room Thursday evening. All the people in the room were very nice and helpful to me. Thank you.
I was never sick a day in my life until October, when I had a very bad heart attack. I was 3 weeks in the hospital, 2 of those weeks spent in intensive care. I came home so weak that it took all my effort to just wash myself. Now 4 months later I am doing almost everything I did before my event and feeling pretty good most of the time. I exercise every other day for 40 minutes and I take all my medicines as instructed. My doc is very happy with my progress. I was so bad the doc's didn't think I was going to make it but no one told me, so I continued to surprise them all and I improved every day.
I know that for some reason I was spared. I think my job here is not finished yet. I have a 10 year old little girl that I just cannot leave yet. Even if I am having a bad day, I thank the Lord for letting me have another day with my family. I read the forum every day and look forward to all the new posts. Thank you Jon, for having this site. Goodbye for now, Cheri S. firstname.lastname@example.org
Blake, March 10, 2001 - Hi, I just wanted to let people know about needymeds.com. It has info and ways to get help with the drug companies for people who need help with their meds. Blakein85@cs.com
Jon's note: This Url and more can be found at the Links page under "getting free medication"
Willaim B's March 10 reply to Karen K's March 9, 2001 - Hi, The tendency to retain potassium was one of the things my doctor explained to me about spironolactone (Aldactone), and the need to have this test added to my blood test. He told me that lasix depletes potassium and sprinolactone retains it. It seems like no matter what one takes, it takes or adds something that you have to check in a blood test and be careful with. email@example.com
Bill B's March 10 reply to Ernest's March 9, 2001 - Hi Ernest, Bill B here. I had WPWS in 1997 and had an EP study and cardiac ablation done at Baylor heart center in Dallas. It took 8 hours but they put me out so I remember little about it. They went in through both femoral
arteries (groin) and put in a subclavical cath on the left side under my collar bone. The only part that hurt was the subclavical cath, which left a bruise and was sore for awhile.
Since I had an ablation- EPS combo, I don't know if they do a standard ESP in the same manner but let me reassure you that it's nothing to fear. I took a great nap and woke up to 2 pretty nurses beside me in the ICU. So I hope I helped a little. Good luck with it and God bless, Bill B. firstname.lastname@example.org
Liz D's March 10 reply to Karen K's March 9, 2001 - Hi Karen, I'm not a heart patient yet. I'm still getting tests done but I read this forum for advice and I just wanted to pass on some information to you about an exceptionally supportive group of people who write, send gifts, and little messages to patients undergoing chemotherapy. It's called "Chemo Angels." I happen to be one myself and as Chemo Angels we're assigned a cancer patient to write to weekly, sending gifts and letters as long as the patient receives chemotherapy. I thought maybe you might be interested in this for your daughter. Of course, she does not have to reply to any of the cards and letters. If you are interested, you might e-mail email@example.com. You would sign her up and they would then assign an "angel" to your daughter as soon as possible for the duration of her treatment. By all accounts this is an exceptional organization. A lot of cancer patients rave about it. Anyway, I just thought you might be interested. Liz D. MaryAstor@aol.com
Stephanie's March 10 reply to Thelma's March 9, 2001 - Hi Thelma, Thanks for sharing about your experience with Coreg. My doctor just bumped me up to 25mg twice daily. I am starting to feel better but I could sure relate to your "hit the wall" feeling with every muscle aching.
I have a question for everyone. I know how important exercise is, but do you continue to excercise when you are experiencing med side effects or if you are having a bad day? I sure don't feel like exercising but I don't know if I should push myself or not. Have a great weekend, Stephanie. firstname.lastname@example.org
Jon's note: be sure to check The Doctor's Page
Carol O, March 10, 2001 - Hi all, Yesterday I went to the hospital for a day of tests, which included an echo, a MUGA scan, and a stress test with oxygen consumption (Vo2max). I have no idea what the results of my echo and MUGA are yet because I won't know until I see my cardiologist in 3 weeks. However I am very happy to report that my Vo2max number on the stress test was 20%. This is the same as the last stress test I took 8 months ago so I'm just very happy that it is not any lower. My cardiologist always tells me that he wants to see the Vo2max number remain constant or improve over time so I think he should be happy with these test results. For the past 4 year my ejection fraction numbers from echo and MUGA have always been low, from 10-17% but as long as I feel good, I try not to pay any attention to these low numbers. Best regards to everyone, Carol O. email@example.com
Ginger's March 10 reply to Jon's March 9, 2001 - Hi Jon, I for one would hate to see Who's Who go away. It's nice to often read a post and be able to put a face behind the words. Do you want just new bios or updated ones too? I think the people that have improved greatly should update their bios to show people that the 5 year statistic and the old-time docs who speak only of gloom and doom are no longer always the case. Stay well, y'all. Hugs and prayers, Ginger.
PS. Jon, what graphics program are you using to make the cool graphics on this site? firstname.lastname@example.org
Jon's March 10 reply to Ginger's March 10, 2001 - Hi Ginger, I won't do away with it, I just start to wonder how appealing a section can stay if it isn't updated in a really long time. I'll take any updates as well as new bios. Just remember that I don't update the ages on your bio because that would invalidate the date next to the entry on the Who's Who main page. :-)
I struggled with an old non-layers version of Paint Shop Pro for a long time but last year a corporation donated a new version of Photoshop 5.5 for use on the site and I've been happily using that ever since. The corporation asked to remain anonymous. I have also used MS Image Composer (came with Front Page) and Icon Edit Pro (shareware). Icon Edit Pro is excellent for making buttons and bullets as well as thumbnails, which it does automatically from photos. Although 85% of all my graphics are done in Photoshop now, I also currently use the following in one way or another:
If you want to do web graphics and not any high-res stuff for printing out, I would recommend either Paint Shop Pro (shareware - I think about $80) or Gimp (which is free but designed for Linux and ported to Windows). If you want to do quality print graphics as well, Photoshop is the way to go but it's about $600 and requires a very hefty pooter. Good freeware packages for various purposes include the Calimax modeler or sPatch for 3D, Artifice HomeWorkShop Lite for architectural design and floor plans, and Fast Movie Processor or VirtualDub for video editing. Jon.
Lee R's March 10 reply to Ernest's March 9, 2001 - Dear Ernest, While an EP Study is invasive, it is done by a well-trained physician. In fact, my cardiologist assured me that if your heart ever "misbehaved" (decided to do a little arrhythmia dance) the place to be is a hospital with an EP physician at your side! My test was done 3 years ago and while I was nervous too, in hindsight it was easier than a cath. With a cath you are usually sedated but awake while with an EP Study, they commonly give Versed, an anesthetic which quickly puts you in LaLa land and you don't remember anything.
You are hooked up to an IV and a defibrillator is placed one on your chest and one on your back. If you do need to be shocked because of an arrhythmia, you do not feel it. I was shocked many times because my heart goes into VT easily and I did have a sore spot on my chest and back but they use a cream which fixed it up right away. Remember Ernest, you will have a whole team in there with you. It is probably the safest place you will ever be.
If you do need an ICD, take it as a positive thing. Mine has saved my life 3 times. I may be 62 now but I am still enjoying this life very much. My doctors have a site at www.arrhythmia.org/ with some good info. You also might want to check out Guidant and Medtronics, companies that make ICDs, and their sites, which have a lot of information. There is another site called The Zapper, which you can reach through Jon's Links page. The Zapper is run by Jon Duffey. I hope this helps you Ernest, and if you have any more questions, just e-mail me. I'm sending good wishes and vibes to you. We really have a lot to be thankful for when you consider these new tests and the drugs now available for CHFers! Good Luck, Lee. LeeJRoush@msn.com
Jon's note: A great collection of health care links is available here
Davida S' March 12 reply to Tracey C's March 6, 2001 - Hi Tracy, It could you be having withdrawal symtoms from suddenly stopping your medicine. Did your doctor try to wean you off by reducing them first? The doctors cut my husband off Coreg cold turkey and they registered a 153bpm heart. To this day I don't think that was an arrhythmia, just a reaction to withdrawal. Nevertheless they couldn't take chances and put him on amiodarone. From what you are saying, it sounds like you felt better on the medincine, which sounds like your body was addicted (which is natural) and now it's trying to regain balance. I cut caffeine out and the first few days I would wake up with headaches that were blinding and I had fatigue. Relief came from Excedrine, which has caffeine. I never made the connection. Finally I started taking Tylenol when the headaches got too unbearable. We know how addictive nicotine is. email@example.com
Jon, March 12, 2001 - Hi everyone, The following pages on my site have been added or updated - they are not all heart related:
Davida S' March 12 reply to Brenda B H's March 10, 2001 - Hi Brenda, Please pray for guidance. You should not go into this scared to death. That's enough to cause unwanted symptoms. It would be great to participate in something that would improve your symptoms but you have to be at peace with this. So take your time and think it over and tell them "Don't call me, I'll call you" and mean it. Then pray and share your fears with God and wait for direction. They need to back off and give you time to let this sink in and weigh your options. I will pray for you and ask the Lord to bring you guidance and peace with your decision. If this device is for you, God will direct you and take away your fears and give you courage. If it is not, you will know also and have the strength to say no and accept your decision without a second thought. Pray for guidance. firstname.lastname@example.org
Mol, March 12, 2001 - Hi, I have a relative who suffered manic depression while on Coreg and suffered greatly as a result. If you or anyone you know has suffered this side effect or a similar one please contact me by e-mail. If anyone knows how to research this further, I would appreciate your help greatly. Thanks. email@example.com
Brenda C, March 12, 2001 - Hi all, I would like to ask if anyone here has ever taken the new drug Pletal. The generic name for it is cilostazol. My doctor has recently prescribed this drug for me because I have been having pain in my legs when I walk any distance. As I understand it, this drug dilates or widens the arteries supplying blood to the legs, as well as decreases the ability of platelets in the blood to stick together. However, according to my pharmacist, Pletal should not be taken by CHF patients. Although I have not begun taking this medication yet, I would like to hear from anyone who possibly has taken it to find out more about the possible side effects. On the other hand, perhaps this would be a good question for the CHF specialist on board. Hugs to all and may God continue to hold each and everyone of us in his hands as we struggle through this life. firstname.lastname@example.org
Jon's March 12 reply to Brenda C's March 12, 2001 - Hi Brenda, This is a drug with an action nearly identical to Milrinone, which you can read about here. I would think that your CHF specialist would need to be very much in on this whole deal before you start the drug. Jon.
Rich H's March 12 reply to Brenda B H's March 10, 2001 - Hi, I'm a bit reluctant to reply to this message but was just discussing this trial with a new electrophysiologist since I am running out of options rapidly too. He sounded good - but then they all do - so I can't vouch for his opinion. He quickly eliminated trying this procedure.
If I've got it straight, his problem was the device itself rather than the medical concept. The wire used in this is apparently designed to be used elsewhere within the vasculature than where it ends up. Don't quote this since it is probably incorrect but I think he indicated that the wires are designed for aortic usage but are used as heart wires. He didn't like that and couldn't recommend it.
Has this been confusing enough? Ask your highly paid MDs about it and let them sort it out for you so you feel confident with their procedures. As far as the bums' rush, I'm involved a bit in medicine and sometimes we work real hard to preserve our convenience and add excess pressures on patients to comply. It's bad bedside manner but I guess it's human. Insist on an explanation and reasons other than "booking the surgery room" for the immediate initiation of a medical experiment. I hope I helped some and I hope I was objective, Rich H. email@example.com
Jon's March 12 reply to Rich H's March 12, 2001 - Hi Rich, As I understand it, the Medtronic "Attain" family of lead wires is part of the device under investigation in the MIRACLE trial so it is in the same phase of the approval process as the CHF pacemaker itself. If one is acceptable to a CHFer, the other should be as well. If one is not acceptable to a CHFer, the other probably is not. It's a tough call and that's no joke. You're absolutely right that anyone interested should discuss this at length with their doc and make them earn those big bucks!
Medtronics has 5 different leads in CHF trials right now, I think. Here's what Medtronics says about some of them: (they also have the Attain SideWire lead in trials)
"Attain OTW (over the wire) Model 4193 The Medtronic Attain SD cardiac vein lead is delivered to the left ventricle via the Attain LDS left-heart delivery system. The lead design incorporates a distal curved shape allowing steerability in small cardiac veins, while including the familiar stylet delivery techniques used for placement of all pacing leads today. In addition to the Attain SD, other members of the Medtronic Attain family of leads designed for use in cardiac resynchronization are:
Attain LV cardiac vein lead Model 2187 This lead has been implanted more than 800 times worldwide since it was first commercially released outside the USA in August of 1998, and is currently in the US MIRACLE ICD clinical evaluation.
Attain CS coronary sinus lead model 2188 This lead is currently marketed worldwide for left atrial stimulation and is currently in the MIRACLE ICD clinical trial for left ventricular use in patients with large venous anatomies."
Cindy, March 12, 2001 - Hi, I have a picture that is in color. I got it from medical records department when I was going for a second opinion. I think the picture is part of the heart cath procedure. Is there a name for this picture? Do all caths include a picture? It's in color and shows red spots and blue spots in what I think is my heart. What does this picture tell a doctor? The second doctor gave it back to me saying you better take that back to your hospital since it's the original. Does anyone know what this picture would be called? Thanks. firstname.lastname@example.org
Barb L S, March 13, 2001 - Hi All, I just wanted to tell everyone that I e-mail with Brenda almost every day, and she went to Lexington today for her surgery. I can see that she posted as well. She has been a real inspiration to me and I've learned to care for her so much. So, please everyone send an extra prayer. She would do it for any one of us. God bless and take care, Barb. Alikeys@hotmail.com
Tony, March 13, 2001 - Hi, Well, this last week has been tough. Here in Miami, everything has started growing - grass, weeds, trees - and my blood pressure wants to soar and my heart wants to beat rapidly, with associated increases in chest pains. Fortunately, when nature kicks in like this I can take extra Lanoxin to slow down the beat and take extra Lasix and nitro SR to attempt to lower my blood pressure. I usually continue the extra meds until the environment settles down and my blood pressure and heart rate are back under better control. This seasonal effect on my heart disease repeats each year and season.
Is anyone also having additional problems this time of year, or is it just me? Regards and good health to all, Tony. email@example.com
Joe L's March 13 reply to Davida S' March 6, 2001 - Hi Davida, I'm sorry I took so long to reply but I figure better late than never. The test they used to diagnose my PEs was a pulmonary angiogram which is similiar to a cardiac cath except they inject the dye into the blood vessels in your lungs. This gives an absolute definitive diagnosis for pulmonary embolism. They tried a nuclear lung scan first but the results came back negative. The pulmonary doc said that sometimes the lung scan is not completely accurate so he wanted the absolute answer from the angiogram. The angiogram showed numerous clots in my lungs. The next day they put in a venous filter (a simple procedure) and I haven't those symptoms since. It is something worth checking into if the docs are at a dead end. God bless! JTLucido@aol.com
Shannon's March 13 reply to Cindy's March 12, 2001 - Hi, In our cath lab we frequently give still photos of the arteries to our patients but they are not in color. The description of your picture is not familar to me. Did you check out x-rays or other test results from the medical records department? Those items probably will need to be returned. If it says "COPY" on it or it was given to you or your family by the heart cath staff, it is probably safe to say that it yours to keep. Take care, Shannon. Sthomp1826@aol.com
Ernest D, March 13, 2001 - Hi Lee and Bill, Thanks to both of you for the input on the EP study; it has been very helpful. I'm not to sure if I will need an ICD but if I do the doctor said he would do it the following day. Thanks again, Ernest D. firstname.lastname@example.org
Barb L S, March 13, 2001 - Hello everyone, It's been awhile since I've posted. I pray everyone is doing okay. I am going to have a hysterectomy done this week or the following week. I have gotten clearance through my CHF specialist to have it near home at a university hospital. I'm okay now with the hysterectomy. Emotionally I've been working through it for months. It's having another surgery that concerns me. I have lots of questions like, will they get it all and how, if at all will it effect my heart? My CHF specialist's exact words were, "You'll sail right through this." I wish I felt as comfortable as he does. I don't and I'd be lying if I said I did. My CHF specialist has also said that now I can see him every 4-6 months and keep a cardiologist near home. I feel great about that because apparently I'm still a class 2. I had no testing though and I would say the lack of testing is about the only thing bothering us. I didn't even have a blood test to check my dig level. We don't understand that. It's definitely a first since I've been diagnosed.
My dad is not doing so well. We have found out that his EF is not good. His numbers have gone down. The only reason we found out anything is because he had to have his Coumadin level checked and when they took the blood from him he got a bruise that spread all the way up his arm from his wrist. None of us have ever seen anything like this. His doctor in 30 years of practice had never seen anything like it. They changed his medication because they believe that did play a part in the bruising. Just another day in the life of a beloved parent who matters to his family. Please keep him in your prayers and thoughts. His name is Sam Severino. Everyone, please take care and God bless, Barb. Alikeys@hotmail.com
Barb L S, March 13, 2001 - Hi again to everyone, Paula and I are very good friends. She came to visit us after I had spent the holidays in the hospital and she had brought her very ill son Anthony. Her e-mail is being given out with her permission: Bigmouth1021@aol.com.
Finally we were able to go see them. Please keep 3 year old Anthony in your prayers. He is listed for a heart transplant. Also, please e-mail Paula when you can. You have no idea what this does for her spirit. I'm thinking that with all of the caring people who come here, unfortunately someone must know of a similar situation with another child, be it a toddler or older child. We can't seem to find a toddler with cardiomyopathy and congestive heart failure. Thanks, God bless, Barb. Alikeys@hotmail.com
Karen K, March 13, 2001 - Hello All, I had my first appointment with a CHF specialist. It was at the University of Iowa Heart Failure Clinic. Since this is a teaching hospital I was first seen by a fellow doctor (not sure what level this actually is). He then presented my case to one of the CHF specialists who then came and talked with me.
The specialist agreed I should probably be seen 3-4 times a year instead of yearly or less often as my internist had been doing. He did agree with my meds and was pleased to see that I was on Coreg (this is due to what I read on Jon's site before Coreg was even approved for treating CHF). He did question the Lasix and spironolactone but didn't change the meds. He did, however, prescribe Lotensin in lieu of Capoten (Captopril). Interestingly, the "fellow" wrote the Rx and wrote it for 30mg once a day. The drug doesn't come in 30mg tablets so I'm waiting for a call back from the nurse. I have (of course) done a Net search on this med and it warns against its use with Lasix and-or a potassium sparing diuretic. Any comments on this?
Interestingly, although I've been following a lower potassium diet my potassium is still at 5.3, which is just a tad over normal. I've even been keeping a spreadsheet of all the foods I eat and researching to find the amount of potassium in each food. I've stayed within the boundaries set by the dietitian. Now what? Another side effect of Lotensin can be an increase in potassium level. Who is the doctor here?
We did have some good news last night. My daughter's cancer does not have the Her-2/NEU marker, which is a good thing. The marker is an indicator of less time between recurrences. We're still hoping that Wendy will start chemo this week. Her support system is amazing. She doesn't have to cook until June given the folks who have signed up to bring them their dinner.
The doctor says I am either a class 1 or 2. He told me he was honored I chose to come see them but in some respects I felt as though he didn't think I needed to be there, although I do return in one month. Karen. email@example.com
Anna N, March 13, 2001 - Hello everyone, I stopped working last week with a note from my doctor saying I would be disabled for at least 12 months with cardiomyopathy and fibromyalgia. I called the Social Security office today to get forms to fill out and they told me they only do it in person or by phone. I wasn't expecting that. I thought there was a lot of paperwork to fill out first. Anyway, I made a phone appointment for Thursday and need advice. Is there anything I have to be careful of saying or not saying? It seems like it would be really easy to say something wrong that could mess up the whole process.
Also, I had a scare last week with fluid retention. I haven't had any for awhile. Saturday night my face was swollen, as well as my ankles. It was gone by Monday. My dcotor still seems to think that with a 40% EF, that shouldn't happen. I've added everyone who posts to my prayers, as well as the specific requests. I think we all need them. firstname.lastname@example.org
Bill D's March 13 reply to Cindy's March 12, 2001 - Hi Cindy, It could be a picture from your angiogram. The red spots tell your doctor where your blood is freely flowing. The blue spots are cold where your blood is barely moving. If it's perfect there will be a red "lifesaver." As your EF goes down, there will be sections of your lifesaver missing. Bill D. email@example.com
Maureen Mock's March 14 reply to Barb L S' March 13, 2001 - Hi Barb, I have an EF of 15% and a Vo2max of 13%, and am in the process of getting on the waiting list for a new heart. I am also 50 years old. With all of that said, I had a complete hysterectomy this past December, and sailed right through it. Like you, I was scared but the OB surgeon, my heart doctor and anesthesiologist were all in on the surgery together. Actually, the bleeding, mine was post-menepausal, is more dangerous to us than the surgery. I thought I knew everything but found that upset hemodynamics or anemia are true enemies to the CHF patient. Anyway, I hope sharing this is helpful to you. You may e-mail for any further details or support. I am sure you will be fine. Just make sure all 3 - surgeon, anesthesiologist, and CHF doctor, are all on the same page. Love and peace to all. firstname.lastname@example.org
Ginger's March 14 reply to Anna's March 13, 2001 - Hi, I have about the same EF as you and just the last couple of weeks have been seeing signs of fluid retention. Like yours, it didn't last long. I am on a mild diuretic and will ask about increasing it on the 23rd when I go back. My doc acts like yours: with your EF you shouldn't have those problems. Duh, doc, What I should have and what I do have are 2 different things, huh? No Vo2 max test yet here either. Their scheduling department must be really slow! <g> My stepdad is getting used to his ICD and is doing well. He has noticed he doesn't get SOB as easily now too. Thanks all, for your prayers. Hugs and prayers, Ginger. email@example.com
Bill B, March 14, 2001 - Hello all, Yesterday I hired a lawyer for my SSD appeal. She tells me it will be 6 to 8 months before I can expect a hearing date. I was told by another source it will be more likely 12 to 18 months. Her explanation of this is that there are only 15 judges and there are 4000 new appeals requested per month in Texas. Also, SSD is under orders from the White House to give priority to persons that are homeless. I wish I had hired her 2 years ago when all this began and maybe, just maybe, it would be over by now.
Anthony, I am praying for you. Bill B. firstname.lastname@example.org
Jon, March 15, 2001 - Hi everyone, The following pages on my site have been updated or are new: (they are not all heart related)
Anna's March 15 reply to Ginger's March 14, 2001 - Thank you for letting me know you have the same problems, both the fluid and the doctors. I was afraid I was taking a turn for the worse when my face was swollen, but the doctor just says, "Your EF is 40%, stop worrying." Well, it's not his heart! It always helps to know others are in the same boat. Also, some people thought my question about SSD might mean I was trying to lie to the interviewer. That's not the case at all. I'm just very nervous and afraid I might say something wrong. I think as soon as I get turned down once, I'll take Bill's (and Jon's) advice and get an attorney. email@example.com
Tom, March 15, 2001 - Hi, Thank you so much for your time and consideration. It's been quite awhile since I posted here. I am mostly on WebMd. I've got to tell you though that a year and a half after being diagnosed I am still fighting the mental battle of all this. I know for a fact it was a combination of the Atkins' Diet, doubled medication and a little bit if gin that caused my rhythmic problem last summer. That's a whole other story. I was implanted with an ICD in July. I have been very good, with zero zaps since I was implanted.
My cardiologist wanted me to go to a university medical center to get "known" in case I ever need a heart transplant. I couldn't go to the University of Michigan because of insurance so they set me up with Cleveland Clinic. I got my appointment for April 12. I hope you can understand what I am about to say. I don't think any of my docs realized how bad I was when I was diagnosed with heart failure. I know how bad - I know how scared I was - I know I stopped smoking in one day and I know I could barely walk, work, or even have my baby son on my lap.
When they put me on Lasix and got 14 lbs of water off the old boy, I thought I was cured! I could walk and breathe, and I felt better. That has not changed. If anything, I am still getting stronger. I am a class one with a rotten EF of 15%. I work all day, stay up most nights until 11:00 PM and get up at 7:30 AM. I can hold my little guy (who is not so little at 36 lbs) and am getting emotionally stronger as time goes on. The point is that I am not ready for more testing nor do I think it necessary in my case to do so at this point.
If it is necessary at all, I will do it. If, as the doctor says, it's getting my name known at the clinic then I don't want to do that. I go bonkers worrying about it! I can't speak for the rest of the "family" here but my post traumatic stress has been horrible since last summer's episode when I went into cardiac arrest. I have had no problems since. I am coping better but am still not there yet. I was told it may take 1½ years or more. I think I am going to learn to cope better before I submit to any more poking and prodding. Whew, thanks for listening.
Jon, I think your site has definitely improved a lot since I was here last. Keep up the great work. Tom. firstname.lastname@example.org
Liz D, March 15, 2001 - Hi all, I'd like your opinion on what surfaced at my cardiologist's yesterday. The cardiac nurse (quite nasty too) was turning away all patients who had scheduled stress treadmill tests because the EKGs they brought with them were really bad, according to her. Of course this was after the patient had been prepped and prepared, and more importantly paid their $15. She also wouldn't let me retake mine because she said it wouldn't do any good. The results from the incomplete one I took 2 months ago would be the same and that I needed to move on to more extensive testing. This, despite telling me in front of my husband at that time to, "come back in a couple of months and retake the stress test since I showed low exercise intolerance on the first one" due to my recently diagnosed COPD, so nothing would be conclusive. She flatly denies she said that and my husband is furious.
We're out $15 and the other patients are as well. Apparently she did that with the authority of the cardiologist on call. My first stress test did show some ventricular arrhythmia but that was not explained to me at the time of the test. That came back on the report with the notation "clinical correlation suggested." Who's at fault here? Should we try to get our $15 back or should we ditch this outfit? I also feel badly for the other patients. Is this common practice? I didn't know you could refuse to test somebody once they got their referral from their PCP. I feel like we just got back from the twilight zone after an unpleasant encounter with the evil Nurse Ratchet. Thanks for listening, Liz D. MaryAstor@aol.com
Jon's March 15 reply to Liz D's March 15, 2001 - Hi Liz, Ditch the outfit. Also, if you have some spare time, feel free to register formal complaints with the medical practice administrator, the state medical board (usually called "Healing Arts"), your local Better Business Bureau, and if insurance is involved, the state Insurance Commissioner. No nurse has the formal medical knowledge it takes to say that a test is unnecessary when it has been ordered by a doctor. That's absurd. No doctor should say that either, without physically examining you! Jon.
Jon, March 15, 2001 - Hi everyone, It has come to my attention that some companies are now marketing meats that are "moisture enhanced." Do not use these products! They have been injected with water, seasonsings, and salt! It will skew your sodium intake with no way of knowing by how much. Jon.
Ben B, March 15, 2001 - Hi everyone, Just checking: Lee Ann D, Jana B, Leland Y, Doug K, Tim B, Hope M - are you still out there? email@example.com
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.