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.