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.
Sunday, January 24, 2010
the one about my latest heart info
Labels:
Brett,
doctor,
echo,
heart,
medication,
pre-eclampsia,
pregnancy,
Quayd
Friday, January 22, 2010
the one about taking a pledge
I am not a huge Oprah watcher, but I did happen to catch it the other day. I was shocked by what I saw. It was about people who text and talk on the phone while driving. The statistics were SCARY!
I used to text in the car, but had a couple of close calls and heard about a few terrible accidents of people who were texting and driving, so I had pretty much quit. But I was still guilty of talking on the phone in the car. Honestly, I felt like I was a good enough driver to talk and drive so I didn't think twice about it. On Oprah's show they showed how when you talk on the phone, you miss a lot of things. You can't focus on a conversation and every detail on the road. EVEN with a hands free set. Scientifically, it is just too much for your brain to process. Everything my look normal, but your brain is actually blocking things. Well that "thing" it is blocking, could very likely be somebody's child in the road. Or your child in the road, or even MY child in the road. Very scary. I took this episode very seriously and I think you should too.
To take the pledge like I did, click here.
For more information and a link to Monday's episode, click here.
Monday, January 11, 2010
the one about ROCK BAND!
We totally love playing Rockband. Its one of our favorite games on the Wii. On Christmas Day night, we went to Brett's brother Brandon's house and played for hours. Brandon and Brynn have a huge projection screen TV and it is so fun for the Wii. The pictures didn't really work, but see that huge white space behind Brandon??? Yah. That is the screen. You can kind of see it behind Quayd in this picture.You totally feel like you ARE the Rockband. Of course we are good enough to really be a band, but, whatever.
This is Brett and his crazy brothers!
Brandon rocking the whammie! Brett on drums and me on the vocals!
Me, chillin with Finn.
This is Brett and his crazy brothers!
Brandon rocking the whammie! Brett on drums and me on the vocals!
Me, chillin with Finn.
the one about ice skating and sledding
I am so behind on my blogging. What is my deal? Oh well. I will try to catch up a bit. I have to post these pictures of quayd ice skating because he is just so dang cute. The pix are from Brennen's Birthday party but I just love Quayd's cute little face! Have you even seen anything sweeter??? Ohhhhh, I love this kid!
Sledding. I love sledding. Truly. One of my fave activities. We went the day after Christmas and had a blast. We took Brayden and Brennen and met up with our friends, the Wallis's. I didn't have the best luck on this adventure. I wrecked a lot, white washed myself, my boots had terrible traction so I had H#@! getting up the hill, among other difficulties. The most memorable event, however, was going down the hill face first on my belly on an inflatable mat. I hit a bump not far from the top and popped my mat. So the only thing between me and the bumpy hill was a thin piece of plastic. I was going really fast and hit a very large bump that had been converted into a jump. Ouch. And I am pretty sure I left my uterus on the hill. I was quite sore for several days, but you know what? It was worth it. We had a blast!
me and my Finny Brett and the boys starting down the hill on a huge tube Look at these cute boys!
Sledding. I love sledding. Truly. One of my fave activities. We went the day after Christmas and had a blast. We took Brayden and Brennen and met up with our friends, the Wallis's. I didn't have the best luck on this adventure. I wrecked a lot, white washed myself, my boots had terrible traction so I had H#@! getting up the hill, among other difficulties. The most memorable event, however, was going down the hill face first on my belly on an inflatable mat. I hit a bump not far from the top and popped my mat. So the only thing between me and the bumpy hill was a thin piece of plastic. I was going really fast and hit a very large bump that had been converted into a jump. Ouch. And I am pretty sure I left my uterus on the hill. I was quite sore for several days, but you know what? It was worth it. We had a blast!
me and my Finny Brett and the boys starting down the hill on a huge tube Look at these cute boys!
the one about a dorky Christmas picture
Saturday, January 2, 2010
the one about the best Christmas gift.... EVER!
A couple months ago, Brett, Quayd and I were all at Wal-Mart around 9:00 pm. We had just gone to buy one thing and as we were leaving, we saw the electric blankets. Brett and I decided that we wanted one for our bed. Once we explained what it was to Quayd, he wanted one too. We didn't bring much money with us that night and forgot the debit card/check book. We only had enough money on us to buy one, so we got one for Quayd. We just never really got around to getting one for us. Fast forward to December 17-19th. Brett went on a hunting trip with his Grandpa Lane, so Quayd wanted to sleep with mom. We decided to bring his electric blanket into my room. I had no idea how wonderful they are! It was so nice and warm. His is only a twin size and he is quite a little blankey hog, so I only got a little taste of the delicious fruit. When Brett got home that Sunday afternoon, he was exhausted and wanted to take a nap. Quayd's blanket was still on my bed, so Brett was able to partake of the nice warm blanket too. We knew right then that we wanted one. BAD! We started teasing Quayd that we were going to steal his. It became quite the joke around here!
This year for Christmas, Brett and I decided not to buy each other gifts. We didn't really need anything and money was kinda tight this year. Quayd was feeling kind of bad that there were no gifts for us under the tree, except the things he bought for us at his school Santa's Workshop thing. We decided that since we were planning on buying an electric blanket for ourselves anyway, it would be a great thing for Quayd to give to us. However, we wanted it to be his idea! It took some creative thinking and planning on our part, but we were able to pull it off. We called Quayd's uncle Cory and gave him the scoop. Quayd was at his cousins and Brett and I were in town. We met up with Cory, gave him some money, and told him to go pick up Quayd. Cory told Quayd that he was going to take him shopping for a gift for his mom and dad, he dropped a few hints on what we might like, and Quayd totally took the bait. They came home that night and Quayd was so excited to go in his room and wrap it all by himself. Of course, he wanted us to open it right then, but we made him wait to give it to us until Christmas. From that night until Christmas morning, we still kept teasing him about taking his blanket. He would giggle and say things like, "You are going to LOVE what I got you for Christmas!" One day I said to him, "I get so cold at night. I wish I had an electric blanket to keep me warm." Quayd ducked his cute little head and grinned from ear to ear. It was so awesome! I know it sounds silly, but his excitement over OUR gift made this Christmas SO MUCH FUN!! On Christmas morning, of course he was excited to see what Santa brought, but immediately put his gift to us in our laps and demanded we open it right away. His face was priceless!!! It was so fun to see him get into the giving spirit. We put our blanket on our bed first thing and he still asks us everyday if we like the gift he got for us. We do, by the way! It is wonderful. But even if it were crappy, it would still be my favorite gift. :)
This year for Christmas, Brett and I decided not to buy each other gifts. We didn't really need anything and money was kinda tight this year. Quayd was feeling kind of bad that there were no gifts for us under the tree, except the things he bought for us at his school Santa's Workshop thing. We decided that since we were planning on buying an electric blanket for ourselves anyway, it would be a great thing for Quayd to give to us. However, we wanted it to be his idea! It took some creative thinking and planning on our part, but we were able to pull it off. We called Quayd's uncle Cory and gave him the scoop. Quayd was at his cousins and Brett and I were in town. We met up with Cory, gave him some money, and told him to go pick up Quayd. Cory told Quayd that he was going to take him shopping for a gift for his mom and dad, he dropped a few hints on what we might like, and Quayd totally took the bait. They came home that night and Quayd was so excited to go in his room and wrap it all by himself. Of course, he wanted us to open it right then, but we made him wait to give it to us until Christmas. From that night until Christmas morning, we still kept teasing him about taking his blanket. He would giggle and say things like, "You are going to LOVE what I got you for Christmas!" One day I said to him, "I get so cold at night. I wish I had an electric blanket to keep me warm." Quayd ducked his cute little head and grinned from ear to ear. It was so awesome! I know it sounds silly, but his excitement over OUR gift made this Christmas SO MUCH FUN!! On Christmas morning, of course he was excited to see what Santa brought, but immediately put his gift to us in our laps and demanded we open it right away. His face was priceless!!! It was so fun to see him get into the giving spirit. We put our blanket on our bed first thing and he still asks us everyday if we like the gift he got for us. We do, by the way! It is wonderful. But even if it were crappy, it would still be my favorite gift. :)
the one about our gingerbread house fiasco
We had a terrible gingerbread house tragedy this year. About a week before Christmas, Quayd was invited to go with Brayden and Brennen to make gingerbread houses at their grandma ReAnn's house. I had to buy him a kit and a few other things. Quayd LOVES ReAnn. She is kind of his adopted grandma. He was so excited to be invited. ReAnn picked him up after school and he was still gone when Brett and I got home from work that evening. We decided to take advantage and do a little Christmas shopping. We took Brett's car, so mine was in the driveway. When Quayd came home, he saw my car and thought I must be home, so he came home with his project that he worked so hard on. He got scared that nobody was home and somehow, he dropped his gingerbread house and, you guessed it... it shattered. He ran to my brothers house crying and Uncle Brandon settled him down, then brought him back to clean it up. Shortly after that, we got a phone call learning all about the terrible event. Quayd was seriously devastated! It broke our hearts, so we bought another kit, and hurried home to help him make another. (Not without stopping at Cafe Rio first!) I needed to hide some stuff and wrap some other stuff, so I couldn't help. Darn. ;) Anyway, dear old dad stepped in and saved the day. They did a great job, and with no help from control-freak OCD mom!!! I guess I will let them do it alone from now on!!!
Friday, January 1, 2010
the one about an egg phenomenon
This is a totally random post, but I just thought this was so bizarre.
Quayd loves scrambled eggs. I make them several times a week. He likes me to put a slice of cheese on it when its all finished. Anyway, the other day I cracked his egg, like usual, and look how weird! It had two yolks!! I was curious how common or uncommon this was because I had never heard of it before. I learned that Double Yolkers appear when ovulation occurs too rapidly, or when one yolk somehow gets "lost" and is joined by the next yolk. Double yolkers may be by a pullet whose productive cycle is not yet well synchronized. They're occasionally laid by a heavy-breed hen, often as an inherited trait. I guess about 1 in 1000 eggs has a double yolk. I found this website that talked about tons of other weird egg stuff. On that site you'll also find descriptions of other egg oddities. Who knew you could have no yolkers, double shelled eggs, eggs without shells, spoon shaped eggs, eggs with tails, wormy eggs, triple yolkers, and even a nine yolker? Yikes!
Very random, but very interesting.
Quayd loves scrambled eggs. I make them several times a week. He likes me to put a slice of cheese on it when its all finished. Anyway, the other day I cracked his egg, like usual, and look how weird! It had two yolks!! I was curious how common or uncommon this was because I had never heard of it before. I learned that Double Yolkers appear when ovulation occurs too rapidly, or when one yolk somehow gets "lost" and is joined by the next yolk. Double yolkers may be by a pullet whose productive cycle is not yet well synchronized. They're occasionally laid by a heavy-breed hen, often as an inherited trait. I guess about 1 in 1000 eggs has a double yolk. I found this website that talked about tons of other weird egg stuff. On that site you'll also find descriptions of other egg oddities. Who knew you could have no yolkers, double shelled eggs, eggs without shells, spoon shaped eggs, eggs with tails, wormy eggs, triple yolkers, and even a nine yolker? Yikes!
Very random, but very interesting.
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