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At age 39, I was diagnosed with congestive heart failure and cardiomyopathy. I was given days to live with a heart function of 5% at that time. I was also told I needed a heart transplant to survive. I am now a 13 year survivor and have not had a heart transplant. I am married to my best friend, Steve and have one daughter, age 19. I'm sharing my journey to help others and because it "Matters to my Heart."

Thursday, October 23, 2008

Yesterday's Dr. visit

Ok....the ups and downs of having heart failure! Yesterday, I went to see my heart failure specialist. The doctor from Ohio state Univ has increased one of my drugs once again to try and improve my heart function. My last echo in September still does not show improvement despite taking higher doses of the drug that is supposed to help with this. So, the specialist wants me in this study where they do the heart net. This has been mentioned to me several times before. So, if I get into this study, there is no guarantee that I'll get the heart net. I could be put in a group that has drug therapy and device therapy (pacemaker), which is what I am currently already doing. So, I need to really pray about this to see what God would have me do. On one hand, I feel somewhat excited because this could really help people in the future once we get FDA approval. It's exciting to think you could be a part of a new treatment that could really improve the lives of so many down the road and at the same time help your own heart. On the other hand, I'm not thrilled at the thought of surgery, athough this surgery is not as invasive as open heart surgery. They actually go through a small incision in your side, they do not have to break the rib cage. I have mixed emotions. Even though I'm not thrilled at the thought of surgery, I feel like it would be a waste to be in the study and get picked for the placebo group. Right now, I'm not really sure what to do so I'd appreciate prayer. I've really got to pray and be still and listen. If anyone reading this has been in this study and has the heart net.......let me know how it was and if the procedure has helped you. The doctor doesn't give me a whole lot of information and I am an information person! I want to know more about it before I decide. Of course, I may end up not qualifying. They want to do another metabolic stress test on me......I just did one back in June and I didn't qualify then so I don't know why they want to do another one so quickly. I think they really want me in this study.....not sure if it's so much for me or if it's more to help get FDA approval. I have real mixed emotions here! OH, if you want to read the little info I have on this, go to www.bigheartstudy.com. They are doing this in Cincinnati at the lindner Center and at the Ohio State University in Columbus.

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