the one about my latest heart info

As most of my friends and blog stalkers know, I have a weird heart issue. It was a rare thing that was brought on by my one and only pregnancy. I don't really talk about this much, not because I don't like to, but because I HATE for people to feel like I am a sympathy seeker. I feel like this is the hand I have been dealt and I am really ok with it. Everyone has their issues and problems, this just happens to be mine. If you don't know my story, and you are interested to read about it, here are the links to my blog posts about it.

Part One
Part Two
Part Three
Part Four
Part Five
Obviously you can tell it is a pretty long story.

Anyway, I went in for a check up in November. No biggie, just standard yearly refill the meds, etc. I actually went to a new doctor this time. He comes to our local hospital and he is on our insurance. Our insurance changed and my Doctors at the U were no longer on our plan. I always hate going to the cardiologist because I am always the youngest person in the waiting room by about 50 + years! And they all look like they are on their last leg as they are lugging around their oxygen tanks and wheelchairs. When I went in the exam room and met my new Doctor, he was shocked to see me looking so young and healthy. He said after consulting with my old docs and reading my chart, he expected to see someone more sickly and unhealthy. We talked about everything I had gone through over the past 7 1/2 years. We also talked about the severity and rareness of my disease. He explained to me that they are learning more and more about this disease and that basically, Peri-partum cardio myopathy (PPCM) is curable. Congestive heart failure (CHF), however, is not. People with PPCM and CHF can live a normal MEDICATION FREE life, as long as certain steps are taken to prevent a relapse. He also said that as long as my heart Ejection Fraction, the amount of blood that your heart pumps with each beat, has not decreased, I would be considered cured of PPCM and could stop taking medication. The day I was life-flighted to the U, my ejection fraction, or EF, was 27%. A normal EF is somewhere around 55-75%. I was told it would never get above 40% ish. It would be impossible considering all of the damage that occurred to my heart during and after my pregnancy. Two years later, my EF had increased to 55%. My Doctors were shocked and thrilled. I was actually in the "normal" range. My heart was still enlarged and "sluggish," but still amazing news. At that point, we discussed going off my meds, but decided it was still a good idea to stay on it for prevention. With all of the new research, it was determined that the only "prevention" is no pregnancy. My new Doctor ordered another echo just to make sure it was still around 55%. I went in last week and everyone was amazed to find out that EVERYTHING had become normal and my EF had gone up to 68%!! Unbelievable!!! So, I get to go off my heart medication!!! This is the best news I had heard in a long time. It sounds easy to be able to just quit taking medication, but that is not the case with this medicine. It is a Beta-Blocker and that makes your heart beat the same rhythm no matter what. It took MONTHS to build this up in my system. I started with 0.650 mg, then 0.325 and finally got it up to 100 mg. It is one of the hardest medicines to be able to build a tolerance. I was literally a zombie through this transition. My body hurt everywhere, I was weak and so tired. Once I got used to 100 mg, I was pretty good as along as I didn't miss a dose. Miss a dose = feel like total crap again. There are many side effects and limitations with a Beta-Blocker, but one of the worst for me has been the unchanging heart beat. If I do any type of cardio exercise, my heart rate never changes. That means that as my muscles work harder and need more oxygenated blood, they don't get it. No matter what. So I tire very quickly! Of course I am thrilled to get past that and be able to exercise, take cold medicine, have more energy etc. etc. etc. But I am very nervous about the transition. I was told getting it out of your system is easier than building it up, but it is still rough. Starting last Thursday, I was directed to cut to 50 mg. It has been a rough couple of days, but I am surviving. My last 50 mg dose is Wednesday and then.... NOTHING! I will be done! I can't believe it. We were sure I would be on this FOREVER! Really, this is a huge deal for me! My energy level has suffered, but I know that in a month or so, it will be over. I am so so so happy, scared, excited and nervous, among other emotions. I don't like thinking that I will be "back to normal," because I feel like there is no normal. Everybody's "normal" changes all of the time. Normal for me before all of this happened when I was a 23 year old woman, is completely gone. Normal for me as a 30 year old woman on heart medication is almost gone. So I am excited to find a NEW NORMAL! And I am excited to finally share this info with you. I have only told about 4 people because I don't want people to feel sorry for me and see me as a sickly girl with a weird heart thing. I want them to see me as Mandy. Brett's wife. Quayd's mom. Mandy.