July 30

After several days of being in severe pain, I'm hoping this part is over. They took xrays & determined the tube had helped close up the hole enough that they could pull it out. After pulling it out & one big scream (though pa said it wouldn't hurt) I'm finally not I'm severe chest pain every time I stand or sit. I will be discharged as soon as my family can make it here. @ some point I will show some pics. But all I've got for now is me with my port site healed!

July 27

Update: it was a pneumothorax(collapsed lung), largest that er had seen (sounding familiar). Serious enough I had to have it fixed right there instead of going anywhere else.wo now I have a drain in my left side, hoping to drain any fluids in my lungs & allow to help heal

For those who don't already know, I'm @ the er again. Thinking it's something with the port. I feel like the Energizer bunny that has been run over & kicked & is still moving. I'll update more when they find something out. 

Here's a pic of my kitty to mix things up!

7/25/19

 Port is in! Got the betadine tan😄

July 18 pt 2

So something has been on my mind. When I ask for prayers, I wholeheartedly mean this. However I'm not asking prayers for me to "get better." I have multiple chronic illnesses that I was born with, so I truly don't believe that I will suddenly be healed from all of this if enough people pray. I do believe He can heal, but I just don't believe that is my path. God gave me these illnesses @ birth, so clearly there is a reason for them. They were triggered @ some of the most challenging times in my life. I haven't the slightest clue, but clearly he thinks I'm tough enough to handle it all. So when I am asking for prayers, I'm asking: for God to give me the extra strength to get through the current crisis, God to guide the surgeons & doctors in the best way to treating me, God to guide me into making the best decisions for my treatment, & God to bring me & my family peace through this turmoil. 

So please continue to pray but keep in mind that what I have is something I will live with forever.

July 18

So I know it's been a while. Hope everyone is enjoying their summer! 

I didn't want to say anything until things were set in stone. 

So... my cardiologist spoke with my neurosurgeon & helped him understand why I needed a port. Now that they are both in agreement, which I never thought would be possible, I've just met with a general surgeon & have it scheduled to be placed next thurs.

I want to help others understand what a port is & why I need it. A port is a catheter that has direct access to one of the main veins to your heart. They surgically insert it while I'm sedated & it is meant to stay under my skin. Then, it can be accessed any time with one stick. Blood can be drawn & fluids & ivs can be run. 

Now because of ehlers-danlos, this past year my veins have started to go. During my hospital stays it was a constant fight of collapsing the veins, blowing the veins, & infiltrating them. I came out with bruises in places I didn't even think a needle could go. But people always insisted on trying because my skin is more translucent so the veins look healthy.

So am I planning on hospital visits? Not really. But as I mentioned earlier, I am unable to eat due to pain from the shunt. So I will be having iv fluids & benadryl given through the port in hopes that it settles the inflammation & allows me to eat. 

I am very happy to be having this. Don't get me wrong, every surgery I have is scary & comes with a lot of risks, but I believe this is worth it.

As always prayers & happy thoughts are appreciated. I'm always open to questions, but I want everyone to understand that: until you're in my situation, you have no idea what choices you'll make.

July 6

So, as my story continues:

I had a follow up with my surgeon's pa. She removed my stitches & after consulting with him, agreed the pain I'm experiencing is due to mcas. 

Mast cell activation syndrome is where the cells in my body overstimulate to numerous things in my environment. This overstimulation creates a type of allergic reaction and it can appear in many different forms. I have high collections of mast cells in my stomach, some call is mastocytosis enterocolitis. So when my stomach come in contact with anything it doesn't agree with, I get reactions, like swelling which creates constipation & gastroparesis, diarrhea which creates dumping, reflux, severe pain, & much more .

The shunt that was put in me was made to travel through my stomach & drain to my pelvis, from what I understand. That's what explains the severe pain; my body doesn't agree with the shunt. The pain happens the majority of the time when I eat, but also randomly. 

My surgeon wants to wait it out & see if my stomach settles. This happened before with my gallbladder. So if I were to wait it out, I could easily lose 20-30lbs like last time.

Fortunately,  my cardiologist is willing to order me iv fluids & a benadryl drip so I can hopefully adjust to the shunt. 

That being said I will be getting a picc line or port for easy access. I'm leaning towards the port based off of others' experiences. 

They had no answer for me feeling dripping down my back. So I guess I'll just keep moving forward until my body says otherwise. 

Thanks everyone for your prayers & support! 

I'll continue to keep you updated.

& here are my 2 major scars I have now.