I have had CHF for about 8 years, over the past 3 years symptoms have gotten worse to include extreme shortness of breath on minor exertion, fainting, blurry and double vision (worsens on exertion), constant fatigue. My ejection was 4% about 8 years ago and I was advised to get on transplant list, however on heavy meds it slowely improved to 14% 2 years ago. I was offered an ICD but choose not to go that route. I was told at my last exam that they were worried about the arrythmias and long QT syndrome and were trying to push the ICD idea. My dilema is ths I was told that my last Echo done 2 weeks ago was much better showing an ejection fraction between 25-30%, yet I don't feel any better at all. If anything shortness of breath on minor exertion is worse. The Doctor said he thought that this was all in my head as my Echo was much improved. The meds I am currently on (per day) are Coreg 100mg., Enalapril 40mg., Amlodipine 10mg., Coumadin 5mg., Spironolactone 25mg, Hydrochlorothiazide 25mg., Lasix 40mg. as needed. My question is, is it possible that all these meds are somehow improving certain parameters of the heart disease without actually improving actual heart function (functional capacity). There must be something to my theory even though the Doc doesn't seem to agree.
I was told by my CHF specialist that there are some who can function very well with a low EF, and others who have a higher EF, can be very symptomatic. It is not always about the numbers, sometimes it is about how you feel. If you are symptomatic, then something is off somewhere.
It is possible that your meds need adjusting. Have you discussed that with the doc?
Is your doc a cardiologist? A CHF specialist?
The concern re: the ICD is that CHF patients are at higher risk for Sudden Cardiac Death. You are certainly a candidate for the ICD. You may want to consider it.
Yes Doc is a cardiologist, I was told 8 years ago that without a transplant I would in all likelyhood die, that is when the ejection fraction was 4%. He said I was very lucky as most people would not have come back from that. He is currently pushing the ICD as he says I am at high risk of sudden death with the long QT syndrome and arrythima. I have mixed feelings about this as these devices are not without there own problems. He said he would go with whatever I decide and can only offer his advice. It just does seem though that with all the meds your Blood Pressure + Ejection can improve Quite dramatically and you still don't really feel any better, I'm just trying to figure out why this is. Has anyone else experienced this?
My ef was at 15% but has gone back up to 40%, I have to admit that I am still tired and have dizzy spells from time to time. I think it is mostly my meds but not totally sure. Why are you so resistent to an ICD? I was very unsure of getting one myself but I am so glad that I relented, it has already paced me many times and shocked me once. Sometimes we just need to listen to the docs, most of them are trying to help us feel better. Good luck!
You are on an extremely heavy dose of Coreg, as I'm sure you know. I sure don't have any answers, just questions, but you might talk to the doctor and discuss the possibility of trying a lower dose. My ejection fraction increased to near normal taking 50 mg of Coreg, but my fatigue increased, so my doc backed off to 37.5 mg daily and I felt much better, and my ejection fraction stayed the same. I've since had another setback but it wasn't related to the coreg dose.
You are correct, by all rational thought the ICD would be the way to go. When I was in the hospital the whole group, 5 cardiologists tried to drum that into my head. I guess the limitations it would impose and the concept of having a piece of hardware implanted is why I am hesitant. I guess my hope always was that the meds and exercise would turn things around. I worked as a machinist prior to all this and did arc and mig welding which could be problamatic with an ICD.
You are correct about the Coreg dose being high but they thought it necessary, as I had refused the ICD. The best way I could describe the whole situation is kind of like being on a see saw. One day I'll feel pretty normal and the next day get out of breath walking down to the mail box. They did say that coreg and Toporol xl were the only drugs known to actually cause remodeling.
I can see why you really are hesitant about the ICD.....definitely can't weld anymore with one implanted. That would definitely be a huge lifestyle change for you...I am so sorry. I have heard welding stories regarding ICD shocking from being near a welder, not even touching it. I came across a story about a guy on a raft in the lake and they were welding a nearby deck and his ICD shocked him for no reason. I guess they attributed it to the welding going on nearby. The man had no reason for his ICD to fire, it just went off. I hope you continued progress with the EF, hope you can lower the coreg. I am on coreg too and it definitely makes you tired! Good Luck!
I have Right Ventricular Failure My Ejection Fraction is 32% I also have Triscupid Regurgitation I have Mild Pulmonary Hyperstention. I have Mitral Regurgitation Enlarge Left Atrium and since they found the Enlarge Atrium they thinking I might have some Diastolic Dysfunction on the left side. I have Multiform Ventricular Ectopic Beats. So My Question is will they put a ICD in a person if they have Right Side Failure with a Ejection Fraction of 32%
my daughter is on 50mgs of coreg in additon to vasotec when diagnosed with dilated cardiomyopathy when she was not improving and was beginning to get fluid retention and was in early stages of heart failure he added inspra. when she wasn't improving (her ef stayed at 33%) we switched cardiologist and he added digoxin due to very frequent pac's. with that her ef went up to 45%, she began to lose weight from fluid retention and generally looks better. (she is 22yrs old)
Hi there....I am also in Chicagoland, currently in Plainfield but moving up to Schaumburg soon. What a small world, eh? Anyhow, I think the standard for ICD implantation is EF of 30%. It also depends if you have serious rhythm problems or chances of SD. When my ICD was implanted I had an EF of 15%, I have since improved to 40% but my RV is badly enlarged and not pumping so well. I just had a right cath done to see what the pumping is on my right but haven't gotten the results other than it is very low. So, what hospitals are up there in Schaumburg? Good luck to you!
Hi! It is a small world but it good to see someone that will be living in the same city as me. I go to Alexian Brother's Medical Center. It's a very good Hospital. I been going to there for sometime. Let's keep in touch. Well I don't know my Ejection Fraction is now it was 32% in 2005 so My new heart doctor I will tell him I would like to see what it is now.
I also take alot of drugs, am tired, dizzy and feel lousy all the time. I also have a low EF. I had an ICD implanted 3 years ago for the same reasons your doctors have explained to you. I am very glad I did as it has saved my life on several occasions. I work around engines, motors and welders quite often and as long as I don't get too close I have no problems and neither should you. I contacted the manufacturer of my device about proximities to welders and really anything with DC power. They sent me a listing of distances that I should stay at from these things. That was really helpful and to date I haven't had any interference problems.
I know we all have to make decisions on a regular basis about our health problems because we all have heart disease. I would hope that you would change your mind and get the implant because it can and probably will save your life.
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