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My heart is broken

donna87
Posts: 9
Joined: Nov 2011

I am so angry and confused and distrustful right now. When I was 18 I was treated for Hodgkins Lymphoma with ABVD, my treatment went great. I had some terrible nausea and lost about 20 lbs but my counts never dropped, no transfusions, no hospitals. I am now a little over 5 years out and it seems like everything is happening now. For about two years I would constantly complain to my oncologist that my stomach hurt all the time and I was constantly going to the bathroom and passing lots of blood in my stool. I would also say that I felt like I could not get a deep breath and my heart would race. She blew it off as stress told me to take some Ativan and go on my way. Mind you my doctor ordered a MUGA before treatment but NEVER checked my heart after I received Adriamycin and radiation to my chest. I could not take the stomach pain anymore and went doctor to doctor and finally found one that listened, he discovered I had celiac disease and was severly malnourished. I was also sent to a cardiologist by my psych doctor for cardiac clearance for a new medication and found out my EF went from 69% to 45% and my pulse goes all the way up to 183 while resting. I am terrified right now. I feel like the one doctor I thought really cared does not care and she thinks cause I am young I am fine, but I am obviously not. Pair my heart problems with my lupus anticoagulant and I am a heart attack waiting to happen (literally. I am a newlywed and want to have children some day, but I am afraid my body wont be able to handle the stress. I could really use some reassurance if anyone went through this and is older now and still living a full life. Thanks

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi Donna,
I have not gone through what you have described, but understand how your feeling. Having doctors we trust is so very important. I believe that once we receive chemo treatment, we all will have some kind of long term side affects, long after we are considered stable or in remission. No matter how much good the chemo does for our cancer, we all know that it is a chemical..(poison) that takes a toll on our bodies. You know your body better than anyone, so my best advice is to make sure you find a reputable heart doctor that will monitor and care for you. I wish the best for you and hope you get all of your health issues cared for. Come back here for support and hopefully someone else that has gone through the same experience as you will see your post and comment. Good luck...Sue (FNHL-2-3A-6/10)

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