GI appointment

I've know something  was wrong with me, (well something else, what isn't already wrong with me?) I've know for a while. I've had a hard time swallowing chicken for a while now. After a while, I'd become nauseated for no apparent reason. Suddenly my appetite shrunk, and eventually I couldn't eat certain foods without getting sharp stomach pains. I occasionally mentioned my stomach pains but my primary care doctors didn't think much of it.

When drs don't think much of what I tell them, I tend not to worry about it. I try my best to ignore it. I cut out what hurt to eat and got on with life. Fast forward about 2 years and I had my first meeting with the liver team. (Did you know it cost over 900$ to talk with a liver transplant dr!?) My fontan (the open heart surgery I had when I was 1 1/2 and then again at 19) is well known for causing liver issues. My team has been watching my liver numbers for a while now and they have slowly been getting worse. They weren't to concerned and said we would continue to watch them. I sat on the advice for about 1 day and decided, "no, not gonna happen." I didn't want to just sit around waiting for it to get worse. So I called them and told them I wanted them to recommend me to the liver team. Thankfully, even though they didn't think it was worth it, and that nothing can be done, they referred me anyways. 

Have I mentioned how much I love my cardio team? They listen to my concerns and even if they don't think its that big of a deal, they do what is needed to help me feel comfortable. 

So I went to the liver clinic, they drew a lot of blood, to checked for diseases that could cause liver damage 

Thankfully all the blood work came back negative. So more testing was order. We did yet another abdominal ultrasound. 

We know for sure my liver is fibrosis, but we are believing I'm in the beginning of cardiac cirrhosis. My heart isn't sending enough blood to my liver. So we decided it was time for an upper endoscopy. Josh came with me because I needed someone to drive me home.

 How cute is he sitting there holding my bag!!!! This was his first time going to an appointment with me.

 

Scopes aren't to bad. They put the bite block in my mouth and then injected the meds that would put me to sleep. I remember my body got really warm and I mumbled "wow these meds are strong" and the I was out. These are the pictures they gave me.

Most of the pictures were normal. 

Except this one. It showed what my doctor thought was a bezoar. Undigested food and/or foreign objects that was stuck in my stomach. I was sent home within an hour of the scope. The Monday after the nurse called to check in on me. I told her I was nauseated. She began asking questions and I ended up telling her about my nausea and stomach pain issues. She referred me to GI to see if we could get it all figured out. Two days ago I met with the GI team. The dr told me what they saw on the scope was not actually a bezoar, but undigested food. They proceeded to tell me that they thought I had what the call delayed gastric emptying. Also known as gastroparesis. My heart dropped. Gastroparesis scares me. I've worried for a  while that it might be gastroparesis. I've watch friends go through it. A lot of them have needed feeding tubes. That scares the shit out of me!

So we set up the procedure the will confirm whether or not I have it. 

I pray I don't but it would explain a lot.

Crazy Annoying Questions I get

Crazy questions I get when I tell people about my heart.

Some of these questions have been asked to other CHDers also. I asked for their input. Thanks ladies!

1- Can you have sex?
Can you?

2- Can you have children?

This can, at times, be an incredibly touchy subject for me. All I have ever wanted to be was a mother. I've had gas station attendants ask me when they see my scar and ask what it is. Seriously!? I don't even know you're name. Just don't ask. It's none of your business.

3- How are you alive?
This is asked by like every single person. You've seen the scars. Surgeries, lots of surgeries.

4- You're to young to have these issues, to take the meds, to have a chart this big.

So on and so on. A lot of people say it with sympathy, which I guess is suppose to be nice, but when you hear it over and over again you sometimes just want to scream "shut up!" Illness's don't discriminate. And seriously, when a doctor says this, I just want to up and leave the room.

5- Are you going to die?/shouldn't you be dead?

Yup wait a second, I'll get right on that.

6- You're fixed now right?

After surgeries we get this a lot. No, just no. There is no cure.

7- You just need exercise and a good diet and you'll be ok.

 No, this isn't acquired heart disease.  We get a lot of unwanted advice. 

8- What's that on your chest?

Uhm, my boobs? Oh you mean this awesome scar I rock? Oh yeah my chest was cracked open.

9- You've had this your whole life and you still haven't found a heart yet?

Sigh, how many times do I need to say THAT'S NOT HOW IT WORKS!

10- I'm so sorry.

Don't feel sorry for me. I don't feel sorry for myself, you shouldn't either. 

11- You don't look sick

I know, I'm beautiful.

12- Be happy you're alive. 

First off I am extremely grateful to be alive. BUT I am allowed my days where I can be in a bad mood. I'm allowed to be frustrated and mad at times.

13- Don't you want to cover that up?

Referring to our scar. Some of us are extremely proud of our scars and love wearing shirts that show them off. No, we aren't ashamed, no we do not want to cover that up! You don't like it, don't look. 

14- Should you be doing that?

I know my limits, leave me alone. 

15-Would you still have sex?

This was asked after I said I wanted to adopt. Okay, seriously? Sex isn't just for making babies.

16- How long have you had it

The definition of congenital is "Of or relating to a condition that is present at birth"

17- I wish that I didn't have to work.

Shut up no you don't. Seriously I would love to be able to work! Being on disability is NOT fun. 

18- You're so brave.

For living my life? This is all I've ever known. I've had no choice. 

19- You're so lucky.

For being a live. Oh yeah, I LOVE having my chest cracked open and taking a ton of medication just to live. CHD life's a blast.

20- I'd never be able to do it/ I don't know how you do it.

Its called living. Breath in, Breath out.

21- You'd be fun to dissect.
My dentist said this to me during an exam. Way to make yourself seem even creepier dude.

22-What happened.

When they learn I'm on disability or see my scar.  "Oh you know, my chest just popped open!"

23- You can do that?
I just did. 

24- Why don't you sleep more at night?
Asked because we are tired a lot. I already sleep 10 hours, I cant stay in bed all day.

25- If you have sex will you die?
Don't worry you're not that good.


We also get a lot of no one will want to marry you because you cant have kids. No one is going to want to marry you because you cant have sex as much as he is gonna want. First off, why are you saying that? Do you know you are a terrible person? Secondly, if that's the way he is gonna act, you don't want him in your life anyway! You will find someone who loves you for you. Loves you even if you can't have kids, or sex every other hour. Don't settle for less.

Now I'm not this snarky in person, I answer honestly and with patience. I just really wish I could say some of these things. Seriously people! Think! If you wouldn't want me to ask you a question, don't ask me!

Frustrated.

Lets talk dating here. I'm single, and a lot of people don't seem to understand that it is not by choice! I would love to find my one true love and settle done. But I haven't found him yet, he's probably lost. 

So I have been on a dating sight, don't judge me.

I swear you can't meet anyone in person, and when you do meet people in person, well, lets just say they are someone you'd rather not meet. So I have been talking to this really nice guy for about a month or so now. About 2 weeks ago or so I told him about most of my issues. Today, I get a message from him saying "its to much to take on" and that he "can't do it"

Wait what!?

Okay here's the deal, I don't mind people not being able to deal with it. Totally fine by me, I appreciate the truth. What bugs me is that he waited 2 weeks to tell me. Why are you wasting my time? I can understand a day or 2 but seriously? 2 weeks. I wished him good luck and went on my way. 

3 Years, NO hospital stays -- WHAT?

And a General Update
I've been wanting to write for quite some time. I just never seem to find a topic I want to talk about. But I guess its time for a general update. I downloaded the timehop app and have realized it has been three years since my last hospital stay. 

The ER trip 9/4/11

It took 3 ER visits to get admitted (one on the 4th and 2 on the 5th)

 

I've been thinking about that time. I cant believe its been three years. Three years of NO hospital stays. How does that happen? I was having one hospital stay each year from 2008-2011. How am I not having hospital stays anymore?

Oh trust me, I'm not complaining. I am happy to be hospital stay free. I just don't get it. 

TEE and Cardioversion 9/8/11 

 

It worked! How did it work? Nothing ever lasts on me. My fontan didn't last, my maze failed leading to said cardioversion. How is this lasting? It's just a surreal experience. Its crazy that now my heart is one of my smallest concerns. My biggest concern is my muscle pain. 

As some know I was diagnosed with Psoriatic Arthritis on May 28th 2012. Well recently the diagnosis was changed to Rheumatoid Arthritis. I'm one of a small percentage of people who doesn't show up in blood work.

Life has been interesting. I've been given oxygen at night.

 I was diagnosed with a fused vertebrea, C2&C3 are one. Its causing a lot of neck pain. We tried botox, it made the pain worse, so we stick with pain meds. I was able to go to Massachusetts and meet my autoimmune arthritis/heart sister Hailee. It was so fun!! I love that little girl.

I got to see some family too

I moved again, to Brigham City, got myself a nice little house, and some stitches.

Razor blades and coumadin don't go well together.

I had such a pretty bird for a day. 

I love my tiny house. It fits me perfectly. 

I've been trying to attend as many CHD events as possible in between drs apps and bad pain days. I love these kids. 

 Reid and I when I was at his house

Baylee and I at the heart walk.

 Visiting Teagan at the hospital while he waits for a new heart. 

I love being able to give these parents hope, and letting these kids know they aren't alone. That its tough, but we are together in this fight. That we are heart sisters and brothers.

  AND last but not least, a picture of my niece and nephew, because they are beautiful! I don't see them enough, I love them!!!!!!!

Chase is 3! I cant believe it. I remember my brother and SIL bring baby Chase to see me when I was in the hospital. 

 Alyssa is growing into a beautiful little lady. I can't believe she's 2!!!
  

 

Overlooked.

Heart week is over. I have to say I'm kind of happy about that. Not that I don't like CHD awareness or anything. I love CHD awareness. Its so important! I'm just happy that I'm no longer seeing heart mom pictures as every other post on facebook.

Let me state something. I love heart moms. I will NEVER down-play their part in the CHD journey. And I am not say they don't have a hard time. I know they have an extremely hard time. I can't even imagine being them, having to watch a child go through what we go through.
I just get tired of seeing all the heart mom posts. Its ALWAYS a heart mom this, a heart mom that. Sometimes a heart dad is thrown in there. There is one person everyone forgets though, the CHDer themselves. I always see these beautiful heart mom pictures posted, I want one for CHDers also! There are poems about heart moms, I don't see many about CHDers though. I was looking at shirts, and I found all these super cute heart mom shirts, yet the CHDer ones are either for babies, or ugly. It just gets frustrating that we are over looked!!!

We the CHDers, we have the toughest part. We are the ones who are sick. We get out chests cracked open. We have to take our shirts off and get echos, which can be very uncomfortable at times. We have to get the EKGs, we give gallons of blood one vile at a time. We are the ones who can't always do everything we want. 

We are the ones covered in scars.

 Reminders of some of the hardest things we've had to go through.

Like I said. I know heart moms, and dads, have a hard journey too. But SO DO WE!

I'm just so tired of being overlooked.

CHD Awareness Week.

It's heart month! This heart month seems different then other heart months. I'm not exactly sure why, I just don't seem to be in my groove. I'm trying to be that person who educates others about CHD. I post pictures, I try to do edits. My hearts just not in it.

 

(one of the edits I've done this year)

I've even stopped doing edits for other. I kind of have a love hate relationship with edits at the moment. And with the way people ask for them. No respect and no manners!

I don't know. I want to be more into it, but sharing a picture is about all I can muster. 

Maybe because this heart month is different. This heart month marks 1 year since Kylie died. Actually today is the actual day. 1 year ago today. That seems so surreal to type. I still can't believe it. She is the only CHDer I met who has died. My heart is still broken over it.

(fly high Kylie bug!)

I had a dream about her not to long ago. Some of you may remember my promise left unkept, if not read it here. In my dream, we played. We played and we played. She even ran. When I visited her in the hospital she wanted to play with me, but couldn't for more then a minute. She was just so tired. This dream was so reassuring. She can play now!! And I got to keep my promise!!

I had a dream about my dad also. I swear my dreams are taunting me. I'm so use to my dreams taunting me, and torturing me. After surgery I had a lot of nightmares that hurt, physically, they hurt. I'm even use to my dreams taunting me about now being able to have babies, but this one was different. My dreams have never taunted me before about my dad. And it just hurt.

(one of my favorite pictures of me and my dad)

In the dream, we were looking for my dad. It went back and forth between looking for my dad, and a ring of my dads. It was weird. But I just know, we couldn't find him. At one point the ring turned into a spider, again, it was weird. I just know the theme of the dream was we couldn't find him. That he is lost. And it just tore at my soul because I knew in my heart, he isn't lost. I know exactly where he is, and I cant go there!! I had this dream twice. Each time it broke my heart. 

(leukemia isn't what killed him but I know it had a very big hand in his death)

Anyways, so, I know this post is all over the place. But I just had to get that out. Like I've said before, this blog is more of diary for me. So please be patient with me. CHD is hard, and not all of use always want to celebrate heart month.

But since it is CHD awareness week, I will leave you with some CHD facts.

-1 in 100 babies will be born with some kind of CHD
-That is about 40 thousand CHDers born every year!
-4 thousand of them wont live to see their first birthday

-thousands more wont make it til adulthood.

-For the first time ever, more then 50% of CHDers are adults!

-Most CHDers will require at least one invasive surgery in their lifetime

-There is no cure!
-Transplant is NOT a cure. As one doctor once said "Transplant is taking a fatally ill person and turning them into a chronically ill person."

It will not break me.

So my blog got a make over! As we all know I'm very indecisive and have a hard time committing to things. I'm obviously not sure I like it. I'm not sure I like my follow button, it doesn't seem to be working quite right. I also need a new signature, but I cant figure out how to get a new one. So right now this will work. 

I've been wanting to write more, to keep my blog and my facebook page more up to date. I just seem to have the worst writers block. It would be nice if someone would help me with topics. Every time I ask though, no one seems to have any suggestions. I'd love to write something that heart moms and dads would want to read, I just don't know what that is.

I've been frustrated with life recently. It seems that the medical bills will NEVER stop. By the time I get these cardiology bills paid off, it'll be time for another appointment. I love being in Utah, but part of me wonders if things would have been easier in Idaho. I just don't know anymore. It's hard to not be sure of things. 

I'm missing everyone. I miss my mom, I miss seeing her everyday, and having movie nights. I miss my niece and nephew. My brother got a new job in North Dakota. Its great, he really needed the job, but I'm sad he moved. He's no longer just three hours away. He's 12. I cant just get in the car and go see him and the kids. That just sucks. My boyfriend now works crazy hours and I hardly see him. I'd just love to cuddle and watch a movie, but no.

Oh and now my car is leaking fluid. It seems like everything is building up. Everything is trying to overwhelm me. It's trying to crash down around me, to suffocate me. To break me. I'm trying my hardest not to let it. I wont let it. But its hard. But that's why I'm trying to start back to this. To be able to get it all out. To work it out in words. If anyone happens to read it along the way, well that's awesome. If they don't, which I pretty much assume they wont. Well, that's okay too.

Decisions, Decisions.

I want to write, I need to write. I'm just never sure what to write. But I'll just write and see what comes out.

I finally moved out of Idaho! And I'm super happy where I am, but I honestly think getting everything switched over might just be the death of me. Plus with all the moving, and having a 2 story apartment, my pain is worse then usual. But I'm in Utah, and I'm near friends so its nice. 

I think most of you who read this either follow my fan page, or are personally friends with me. But if you aren't there's some news. I dropped my rheumatologist because she just seemed, not the brightest in the box I guess you could say. I was getting super sick on the chemo and I called her asking if she could give me nausea meds. The chemo was helping, I was just so sick and miserable. She said no. She dropped my dose. Which of course meant the pain came back. The lower dose just didn't help. But I still got sick, and it was killing my immune system. I just kept getting infection after infection (respiratory, sinus, so on). I just couldn't get better on the meds. So I called her and told her I stopped them. They were making me sick and I wanted to try something else. She told me "The meds aren't making you sick, its just a coincidence" she wanted me back on them. So I thought about it for a day and decided no. So I told them I wouldn't be seeing her again.

Thankfully I found a new rheumatologist who came highly recommended, who is actually in the town I moved to! I found him online, and I asked a friend about him. Apparently her friend use to work with him and says he's amazing! I found myself a new primary here also, and when I mentioned I was going to a new rheumatologist in October, someone over at the budge clinic, he immediately asked "Dr. Walker?" and when I said yes, he said how amazing he was. So I'm super stoked to meet this Dr. Walker. It sounds like I found the right doctor!

But I've been thinking. I've been thinking a lot about what I want and don't want and I've decided that I'm going to tell him I refuse to do the chemo again. It just makes me so miserable. I feel worse on it, then I do off of it. I understand it helps slow the progression of the disease, but I just don't think I can take it anymore. I'm hoping he will have other suggestions on things we might be able to try, but I understand I'm complicated. It wouldn't surprise me if he said there was nothing else. I know a lot of the meds taken for autoimmune arthritis you cant take if you've been treated for heart failure. Which I have.

I'm really hoping he can help me, but I'd honestly understand if he couldn't. I just hope that if he cant, he can recommend someone for pain management. I hope no one thinks I sound like a drug seeker. But I hurt, and I don't want to keep hurting so much.

My last 4th of July

4 years ago today, I was certain it was going to be my last 4^th of July. My last holiday, period. I wanted it to be amazing, 4^th of July is like my families Christmas after all. So my brother and I made a trip to Wyoming to buy fireworks to make it AWESOME. I remember the day, it was the day Michael Jackson died. Goodness the drive was horrible because they played all the crappy MJ songs and none of the good ones I knew! And we had no CDs! It was a good day though, I was slowly ticking off things on my bucket list. No one really knew what I was doing. I never let anyone know I was going to die.

Everyone felt HORRIBLE about surgery being done at Primary Children's. Everyone, my mom had a bad feeling, my grandpa. On the 4th of July even my best friend knew something wasn't right. She called my crying telling me "You can't die on me!" It tore me apart that this was hurting everyone so much. I even wrote goodbye letters and hid them under my computer keyboard so they would be found when they packed up my stuff.

So, we did a big 4th of July, bottle rocket wars and all. It was so much fun. I didn't really participate in the war because I couldn't run. I was in heart failure, and my heart was dilated and up against my breast bone. I was in so much pain and so tired. But I had fun. It lasted well into the night. The next morning we got up early and headed to Utah.

One of my bucket list items was making a road trip with my brother. Utah wasn't a big road trip like I really wanted, BUT, it was a road trip. I couldn't do any other kind, I was to sick. So on the 5th of July we headed to SLC, we stopped at Lagoon on the way. Spending the day with my brother was awesome. Riding rides was awesome. I didn't last very long, we only stayed a couple of hours, but it was worth it.

Things happened, surgery was changed, want to know how? Read here and here

After surgery was changed, I felt so much better. I met with the new surgeon and I just knew, I would be okay.

My brother worked so hard to make my "last" 4th of July  an amazing one. I'm so happy I won my disability case and got paid so I could make this 4th of July and amazing one for him. I couldn't do a lot, but I was able to do some.

I'm so grateful for my life and family. I'm such a blessed person.
I'm glad I have many more 4ths to come. 

Let's Day Dream

So I wanted to write, and I had no idea what to write, so I asked my facebook friends for suggestions. 

My friend asked me: What would your life be like if you didn't have a CHD?

At first, I didn't think I could answer that. This is all I've ever known, and you know what, it isn't a bad life! Its actually really good! I may have days where I hate it, but its brought about so much good in my life and I couldn't imagine life without it. 

But then I started day dreaming.

What would life be like!?

Maybe I'd be married, and maybe I'd be a mommy. 

Maybe I'd be running marathons! In the past year, all I've wanted to do was be able to run!

I know for sure I wouldn't be in Idaho. I would have a full time job and living on my own, maybe in Chicago. Salt Lake and Spokane wouldn't even have been an option. 

At that's when it hits me, knowing those places wont be an option. I can't imagine never meeting all the wonderful people from Spokane and Utah. I can't imagine never know all the wonderful CHD families I've met in person, and online all over the world. 

I stop day dreaming. If I can't know these people, and I know for a fact I wouldn't know them if I didn't have a CHD, I don't want to imagine.

CHD is hard, so very hard. Its scary, and at times, its a true nightmare.

There is so much heart break in the CHD community.
But at times, there are triumphs to. And those we celebrate. 

There are things I cant do, that I really wish I could. But, its my life. 

There is so much love and support in this "heart family" 

I wouldn't want it any other way.

My Advice to CHDers: It's okay.

I've had a lot of CHD parents I met, in person and online ask me "What advice would you give me?"

Recently I visited a mom in the hospital who asked that exact question. My answer is always, "treat them normal, they will know their limits." I also added to my advice, "You will never regret fighting for him (her). (S)he is worth it." It made me start wondering what would I say to a CHDer as advice. I thought about it for a while and I think I figured it out. So here it is.

It's okay.

It's okay to be scared. CHD is very scary and it is OKAY to be scared. There is a quote I like, before there can be courage there must be fear. 

It's okay to cry. Tears are not a sign of weakness, tears are a sign of weakness leaving your body. It is 100% okay to cry. Some days you might hurt, or be scared and all you can do is cry. That is okay!

It's okay to not like your scar. Some CHD parents say that us CHDers should be proud of our scars. Personally, I am, I like showing off my scars. But I do understand what its like to not like it. Because as I kid, I didn't like mine.  I understand how it can bring back memories of a really painful time in your life. It's okay to want to hide it. Its okay to not want to show it off. Its also okay if you do want to show it off.

It's okay to be angry and wonder why me. Life isn't fair, we learn that at a young age and its okay to be upset. Just know God gave you this special heart because you ARE  strong enough to handle it.

This life is hard, and its scary. You will learn your limits and there may be a few things you cant do because of your heart. But know your heart doesn't define you. You have CHD, CHD does not have you.
Your life can and will be AMAZING! 

A Promise Left Unkept

It's not that I didn't want to keep it, because boy did I. I would have loved to keep it. But I didn't get to.

 -Kylie and I-

I've mentioned Kylie on here once or twice before. I loved to visit Kylie when I was in town for my appointments. She had a beautiful smile, sass that could fill a room and contagious giggles. The first time I visited Kylie I was made to make a promise. A promise to come back the very next day after I had my "lub-a-dub" checked out. Lub-a-dub was what Kylie called her heart. Kylie was patiently awaiting a new lub-a-dub (heart transplant). So as promised I went back the next day. And we compared out stickies because I was wearing a 30 day event monitor. 

 -Kylie and I comparing stickies-

Those two visits were fun. We laughed a lot. Kylie thought it was so funny that if we took my lub-a-dub and her lub-a-dub and put them together we'd have a full lub-a-dub. When she saw my stickies she asked me why I had it and I told her my lub-a-dub was sick too. I told her this yesterday, but seeing the stickies really made it dawn on her, and the smile was priceless. At the end of that second visit I made the promise I'd never get to keep. I asked Kylie how she'd like it if once she got her lub-a-dub and she felt better, I'd come back and play with her. She said okay and I promised her I would. 

I visited Kylie whenever I was in Salt Lake. Each visit was a little bit shorter. Kylie was shy, and not feeling good. But we still had fun. She let me sniff a book with her. And we played a little.
My last visit was in November. She was in the CICU by then. When I arrived a nurse was drawing blood and she was in a chair with her back towards the door. I gave her mommy diet mountain dew and she was grateful because she hadn't been able to find one all day. I told Kylie that once she was done with the blood draw I had a gift for her. I talked with her mom about how my appointments went and how Kylie was doing. Kylie kept turning around looking at me, like she remembered me but she was shy. So I just stood there behind her. Once the nurse pulled out the tube Kylie immediately turned around and said "she's done!" The nurse hadn't even stood up yet but Kylie was ready for her gift.

So I walked around and crouched in front of her and noticed how swollen her body was it broke my heart. But I put on a big smile and held out a gift card and asked if she knew what is was. She didn't. I said I knew she recently got an Ipad that all her heart family pitched in for, and I knew how much she loved it. So I gave her a Itunes gift card so she could go on a shopping spree. I gave her the gift card and told her I wanted her to buy whatever she wanted that mommy said was okay. Mommy said Kylie got what she wanted and I smiled. I told Kylie and her mommy I was glad I got to see them and left not wanting to intrude to long. 

About 2 and half months later Kylie passed away. She got the ultimate lub-a-dub in Heaven. And that was the end of the promise. I never got to go play with her again. My Salt Lake visits will never be the same. I went to the funeral and got to say goodbye, but I'm heart broken. That was one promise I really, really wanted to keep. I miss that beautiful girl.

Question and Answer

So I felt the need to write, but had no idea of what to write about. So it's question and answer time!

What does your o2 saturation's run and what daily medications do you take?

I'm not sure what my sats were as a child, but after my fontan revision (7/24/09) they were 98%. They stayed that way for about 2 years. Recently I've noticed they are usually 93%. 95% on a good day and around 91% on a bad day.  

My current med regimen is; Digoxin (a med to help my heart), Celexa (anti depressant), Asprin, Zantac, Potassium, Coumadin, Coreg (beta blocker) 2x daily, Tikosyn (a med to keep me out of Afib) 2x daily, Lasix, Buspirone (anti anxiety med) 3x daily as needed, an allergy med, and folic acid. I also inject methotrexate (a form of chemo) every Friday evening. 

What do you remember from surgeries as a child and day to day living? Do you remember having any pain? 

My last childhood heart surgery was done before I was 2 years old.  So I don't remember it. I had my last heart surgery when I was 19. I remember that one, and honestly there was pain. Coughing was the worst. But they keep you well medicated, or well my doctors did, and honestly it wasn't as bad as I thought it would be. 

As for the day to day living, honestly it wasn't bad. My mother raised me "normally" just like she did my healthy brother. I was like any other 5 year old, 9 year old, 13 year old, and so on. There really wasn't any pain, except for the normal fall off the bike, scrapes and bruises. There was one point in time where I had a lot of stomach aches and they thought surgery flipped my stomach. But all the tests came back normal and eventually the stomach aches went away. 

You've been diagnosed with borderline personality disorder... Jessica what exactly is that?

It's been almost 2 years since diagnosis and I'm still not 100% sure how to answer this. So I will use a little help from my friend mayoclinic.com

"Borderline personality disorder (BPD) is a mental health disorder that generates significant emotional instability. This can lead to a variety of other stressful mental and behavioral problems."

It, along with my bipolar, effect my moods. I have mood swings, anger issues, self image issues, and anxiety issues. As my mother says, I have violent mood swings. I can go from being happy to ragging mad in a matter of seconds. I also had issues with my weight when I was a teen.

How to deal with "almighty" Doctors that don't share all his knowledge because they think you wont understand more detailed info.
I've had a lot of doctors who didn't tell me the whole truth.  I've learned to ask questions, lots of questions. I read my medical records and if there is something I don't know I ask. I found an old EKG that had stuff I was never told. I called the doctor out on it and he got mad. He dropped me as a patient. It is okay to get second opinions. If your doctor isn't telling you the whole truth, its okay to find someone who will. Make sure your doctors know you want to know everything. The good, the bad and the ugly and if they are good, they will comply.

I would like to know how long you were cheer-leading as a kid?
I must have told you the story about the pom pom extravaganza I did when I was little. It was one day. I never actually was a cheer leader. But I did do gymnastics when I was little. I wasn't very good and I only did one season (I just that's what you'd call it??) It had no effect on my health what so ever. I did play soccer a little bit when I was little. My mom pulled me out during the first game and never took me back because the running was effecting me to much. As a teenager I did drill team (dance) in my high school. I had to have a physical and have the doctor sign off on it so I could do it. He didn't want to sign, he didn't want me to dance (or even participate in PE for that matter). But I talked him into signing. He signed and told me I was only allowed to dance NOTHING else. It was fun and I loved it. I got tired quicker then the other girls, but other then that I was fine.

 Did you have many limitation and as you grew up how did that affect the choices you made?
I got tired quicker then most. I got sicker easier and the heat also made me sick. But that's really the only limitations I remember. I didn't play team sports because I just got to tired, but that was fine by me. I'm not really a team sports person. I've known my limitations since I was really little. I'm okay with stopping and resting when I need to and going to the AC when its to hot out. It never really affected any of my choices until I decided to drop out of college. I wanted to be a kindergarten teacher, but I get way to sick to be around that many kids everyday.

Are you okay flying?
I am perfect flying. I never had any issues at all.
I do have a pacemaker so I can't go through the metal detectors and have to get patted down, but that's the only "issue" I have. 
Also, because I've seen this asked a lot, sternum wires do not set of metal detectors.

Can you have children?  
I've had some doctors tell me yes. It will be hard, I'd need to be followed very closely by a cardiologist and high risk pregnancy specialist. I'd also need to have a c-section.  
But I've had other doctors tell me no. Not only would it be to hard on my heart, it could possibly kill me and the baby. Plus I'm on medications that can cause very serious birth defects.
I think it really just depend on the person. I've made the decision to not even try. I will adopt when the time comes.

Have you had the fontan? If so, do you do yearly checks for your liver and kidneys and when did you start doing this? 
Yes I've had 2 fontans. My original fontan was at age 1 1/2 and my revision was at age 19. Every visit we do blood work and they always check my liver and kidney levels. I've heard of some fontaners having MRIs on their liver but I have a pacemaker so we cant do that. We stick with the blood work.