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.