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Heart failure with low ejection fraction
Good morning my name is Barbara Hines and I have selected soon drawing This Heart support group because I have next to no support in my own family my condition is congestive heart failure with a low ejection fraction also left ventricle issues and they are secondary to receiving chemo therapy the way this was diagnosed was May 25th 2019 I tripped in the backyard hit my chest broke ribs and cracked sternum fluid in lungs and apparently this created a compression injury to my heart because my heart was weak because of chemo therapy I ended up in the hospital because I was having severe cellulitis due to the fluid in my lungs the echocardiogram showed damage that echocardiogram was done in Union 2019 the previous ago done 2018 was perfect the only thing that had happened between those two echocardiograms was me falling in the hospital I received Lasix by injection Coreg and had a procedure heart catheterization left the hospital June 27th 2019 with instructions to take Coreg Lasix also a little later nurse practitioner added losartan my next Echo Food and Improvement of my ejection fraction from 15 to 20 some views showed 25. At the end of that visit My Cariologist was deciding if I should stay where I was regarding medicine because there was an improvement but then he said he had an idea and that was to stop losartin replace with Entresto was to double up on Coreg since losartan was discontinued. After three or four weeks of entresto I was to try to double that dose as well. I have a very sensitive system when it comes to medicine so it took me a couple months to be able to double up on Coreg. When I tried to double up on entresto I could not tolerate that I'm back down to the lowest milligrams of entresto and was told to stay there. My follow-up Echo after making all these adjustments in medicine showed a zero change in my ejection fraction? I was very disappointed because I had done everything that I was supposed to do and now with these new medics my ejection fraction did not go up? I would have thought since the medication plan was different there would have been some improvement I was given a fourth medicine to take and that is aldactone which is another diuretic I have no idea at this point what my next Echo will show it is very frustrating and difficult when you spend so much time with new medicines and they have done nothing to improve your fraction but the first medicines did including losartan but it was never put back into the medicine I take so now I have no idea what's going to happen in the next 6 months and it's worrisome because if this doesn't work I need surgery they want to do a pacemaker which was suggested because of AFib but Coreg is a medicine for AFib and it's been over a year and I have never had that experience it was also suggested did I also have a combo a pacemaker with a defibrillator. For sudden death possibilities I have not gone to anything that would indicate either one of these very frustrating to have to think that my next echocardiogram I will have to make a decision based on its outcome of ejection fraction numbers which the doctor wants at 35 or as close to 35 as possible that's a 10% increase from the first Echo and I had between 5 and 10% increase on my original medicines very nerve-wracking I am retired because of cancer that I've had several times I only have a few people that I can talk to my support system is small and the people are talk to their giving me advice and they do have no idea what I'm going through part of the Improvement ejection fraction is to be in a cordial rehab. I was just start in January. January 25th I broke for the metatarsals across my foot if it not walk for 8 weeks by the time I could cardo-rehab will shut down because of the pandemic. It's been weeks and months since I broke my foot but it has left me with arthritis and the joints in my toes with neuropathy so there's so many things going on and I just want to get out and be able to walk because walking is a good cardio exercise and it's very difficult for me to do because of the pain I have now I'm going for cortisone injections but you can only have those a few times a year so I need to figure out what to do in the meantime because I'm not given any solutions or any suggestions. I am aware that this is a long story I really felt that it would be best to know all of this and I would appreciate your support.
AHAASAKatie, July 24, 2020 9:26am EST
I am so very sorry that all of this is happening to you. It always seems like, when it rains, it pours. I can share what we have on living with advanced heart failure with you. And also, since you mentioned a possible Afib diagnosis as well, I am providing what we have on devices for arrhythmia.
You have truly been through a great deal and I am glad that we are here to support you.
JamesPL, July 26, 2020 4:25pm EST
I'm sure it's very frustrating having gone through what you have especially since you want to do those things to get yourself back to good health and are limited. There's not much you can do about the meds other than to follow your doctor's directive and make those changes you feel are necessary as your body reacts. Not being able to participate in cardiac rehab because of the pandemic just adds to your frustration. I would suggest a couple of things. See if there are any physical therapists you can consult with to see if there are exercises you can do on your own. I know walking is difficult but there are a lot of weight training exercises that are very good for the heart. These are some of the things they show you in rehab. I would also look into a physical therapy commercial facility independent of your local hospital. They might be well versed in cardiac rehab. Whatever you can do for exercising your heart along with a good diet will slowly aid in your recovery.
I wish you well!