The process of accessing my port

This is the heart monitor that I wore for a little over a month! The cell phone had to stay with me at all times because the heart monitor sends it's information to a computer through the phone. Alarms would go off all the time for no reason. I put those circles on my stomach and chest and then attach the wires to them. I'm allergic to the circular pads which meant I had hives those wonderful 5 weeks!

My port is on the right side of my chest (opposite of my heart). You can actually see the tubing that goes from my port to my neck and then to my heart. You can see it right under the skin.

The port is attached and tied to the muscle in my chest. My mom and I had to go through training to be able to access the port at home by ourselves. Obviously this is taken very seriously since we are putting a 1 inch needle in my chest, that connects to my heart and has to be completely sterile. This procedure is not taken lightly.

First my mom puts on a mask and gloves. They aren't sterile gloves for this part. The first thing we do when accessing my port is cleaning the skin in a circular motion with three different sterile clothes with the Hydrogen Peroxide.

Sterile pads and Hydrogen Peroxide

While that dries we prime the needle. That means that you take the needle connected to a line and push saline through the line to get all the air bubbles out. You can only touch the end opposite of the needle because the needle has to stay sterile.

Priming the needle

The syringe on the left is the saline that we prime the needle with. When I'm done with an IV and the needle and line is still in, I take the syringe of saline and flush the line again. Then I take the syringe on the right and flush it through the line. The syringe on the right is Heparin. That is the most important part to make sure that I don't get a blood clot in my port and line.

Once we prime the needle and the Hydrogen Peroxide dries, we take 3 more sterile cloths and clean the skin with Alcohol in a circular motion.

While the Alcohol dries, my mom switches from regular gloves to sterile gloves. There is a certain way to put on gloves so that it is completely sterile.

Once the sterile gloves are on, she carefully picks up the needle and line. Then she grabs my port on both sides with one hand and pushes the 1 inch needle in my port with the other hand. She has to push very hard because it has to go through the skin and a mesh material to get into the port. Once she thinks she's in she takes the syringe of saline and puts a little saline in and then pulls back on the syringe to see if the needle is in the port. When she pulls back we are looking for blood return. All that means is that when she pulls the syringe back, blood should come out, meaning that the needle is in place! If we don't get blood return, that means that the needle isn't in the port, which means you start all over! In the actual port, there is blood that just sits there. That is why the Heparin(blood thinner) is so important.

This is a diagram on the port. You can see how far the needle has to go to get into the port. As you can see it shows the needle a little outside of the skin. The needle isn't flat on your skin. Part of the needle just sticks out! It's weird. The IV goes through the needle, into the port, all the way through the catheter, into a big blood vessel (the jugular vein) and straight to my heart.

Here is my mom putting the needle in. You have to grab the port by the sides and push really hard to get the needle in. You can see how much the needle sticks out of my skin.

Here's the needle in with the tube that connects to the IV or whatever you put in your port. Once we get blood return we put a dressing over the needle and port to make sure it all stays sterile and holds the needle in.

Once I'm done with the IV and I flush it with saline and Heparin, my mom puts on new sterile gloves and we take the dressing off the port, my mom grabs the port again and applies pressure and pulls the needle out. You have to pull really hard to get the needle out since it is in several layers of things. When you put the needle in and take it out, you have to make sure and hold the port firmly or the port will flip over and move around and that would obviously be horrible!

This is all the mess after accessing my port!

That is the whole process! I do this about every other day! There is no easy or quick way to access my port. This is what we have to do every time.

Sometimes I leave the needle in longer than a day if I am going to do an IV two days in a row. It can't get wet which is a challenge. I don't like to leave it in though because the needle hurts all the time when it is in. When you're in the hospital they can leave the needle in up to 5 days but then they have to do this process all over to put a new needle in. The longer you leave it in, the greater risk there is for infection.

This is an IV bag and the tubing. I can start my own IVs which is good!

Beta Blockers

Quick update.

We talked to my Cardiologist today. He said that the problems with the muscles in my heart are caused by the tachycardia (fast heart beat). He is able to monitor my heart rate with the heart monitor that I'm wearing. My heart goes down to 70 beats per minute at night, but then during the day goes up to 140 even at resting. He is putting me on a beta blocker to see if that will help with the fast heart rate and muscles.

Please pray that I will be able to handle the beta blocker. Ever since I got sick I am so sensitive to everything. I can't even stay in our laundry room for more than 16 seconds because the smell of the soap makes me cough and I can't breathe. It's ridiculous.

He wants to keep monitoring my heart for a while to see if the beta blockers will help. So I get have to keep wearing the heart monitor...

Thanks for praying for this!

I'm so cool that my heart monitor has it's own cell phone.

I am one lucky girl! On Friday my heart monitor that I got on Wednesday broke! So we called the emergency number that they gave us and ordered another one. Well yesterday my cute necklace new heart monitor came. Guess what that means? My 30 days to wear it started over yesterday! Wow I'm so excited for these 30 days of endless fun! I get to wear the cute necklace aka heart monitor 24/7! I also absolutely love when alarms go off because the monitor can't get a good reading, which means I get to take the wires off and hook everything back up! It's so great! Oh and I forgot that now I have TWO phones to carry with me. My cell phone and the heart monitor cell phone. Are you jealous yet? Don't worry, you could probably get a heart monitor too. But don't get too excited or else you might pass out and then you might really get stuck blessed with a heart monitor!

I hope you are having a great week!

"The LORD is close to the brokenhearted and saves those who are crushed in spirit."
Psalm 34:18

Mighty to Save by Hillsong

"Everyone needs compassion,
Love that's never failing;
Let mercy fall on me.

Everyone needs forgiveness,
The kindness of a Saviour;
The Hope of nations.

Saviour, He can move the mountains,
My God is Mighty to save,
He is Mighty to save.

Forever, Author of salvation,
He rose and conquered the grave,
Jesus conquered the grave.

So take me as You find me,
All my fears and failures,
Fill my life again.

I give my life to follow
Everything I believe in,
Now I surrender.

My Saviour, He can move the mountains,
My God is Mighty to save,
He is Mighty to save.
Forever, Author of salvation,
He rose and conquered the grave,
Jesus conquered the grave.

Shine your light and let the whole world see,
We're singing for the glory of the risen King...Jesus (x2)

My Saviour, He can move the mountains,
My God is Mighty to save,
He is Mighty to save.
Forever, Author of salvation,
He rose and conquered the grave,
Jesus conquered the grave.

My Saviour, you can move the mountains,
You are mighty to save,
You are mighty to save.
Forever, Author of Salvation,
You rose and conquered the grave,
Yes you conquered the grave"

Well this is a bummer...I got new medical jewelry

There is a lot of information in this post. So towards the middle is the serious medical information. The first part is just pointless stuff!

Sunday night through Tuesday I had fever. I don't know why but I felt horrible. Thankfully I don't think I have fever anymore.

Yesterday we headed to the hospital for my Cardiologist appointment. We drove up saying this was the same building my Rhematologist was in. I went to him right before we found out I have Lyme. He diagnosed me with Fibromyalgia and put me on Cymbalta, Ambien CR, Lunesta, and some other strong medicines. I was 15 at the time and none of that is approved for anyone under 18. I started taking them anyway and I blacked out a few times from them. We called the emergency doctor and he told me to stop taking everything. That is when we threw all the medicines in the trash and knew this was not the right path to be on. I never went back to him.

So yesterday we valet parked and got in the elevators and ended up in the SAME place that my rhematologist was in. Thankfully my rhemetologist isn't there anymore...

It was weird being there again, especially since we never came back.

They took me to triage and took my vitals. It took at least 2 cuffs and 3 tries to find my blood pressure. The nurse asked if I always have trouble getting my blood pressure to read and I said yes. I also told her that my blood pressure is always 90/60. She was still determined to find out for herself. When it finally read it was pretty close to 90/60. It's kind of funny that I have to tell my nurses where my good veins are and what my blood pressure and heart rate are. I'm unique because usually if you have a high heart rate your blood pressure will be high too. Nope, not with me. My heart rate is always too high and my blood pressure is always super low. Nurses can't even count my heart rate because it's too fast. Thank goodness for machines that read it for you. At triage my heart rate was 132 bpm.

After all that she took me to my room and told me to change into the gown. Well that was a bummer because it was a little chilly. After I got my gown on, another nurse came in to do an EKG. I guess it's just standard procedure to do an EKG on everyone who comes in because I have had like 4 EKGs recently. My EKGs are always fine.

After that, the doctor finally came in! We went over my life story 900 times and he listened to my heart and all that fun stuff. His first question was, and I quote "so where did you get the Lyme from? Did you live or travel to the north?" I thought oh no! here we go again. Please don't make us have to be escorted out of the building by security. Just don't even go there. (just kidding we aren't that rude but it's come close a few times) He finally moved on and was okay.

-Medical Information-

We started talking and he told us a few years ago that another girl my age came to him with Lyme disease. Her heart was completely blocked from the Lyme so they immediately admitted her to the hospital and started her on antibiotics and steroids. I'm glad she got to the cardiologist fast so he was able to save her life. They caught her Lyme in stage 1 so they reversed the heart problems and she's fine!

From glancing at my echocardiogram, he saw that there is something wrong with the muscles in my heart. He is going to call us in a few days and update us on what he sees when he has a chance to look in detail on my test results.

He said I definitely have tachycardia. That just means that my heart is faster than normal. I think above 100 is diagnosed as tachycardia. Fast heart rate is normal for a Lyme patient but that doesn't mean we can just forget about it. The Lyme is definitely attacking my heart which can obviously cause serious problems.

The doctor said that we need to find out what is causing the fast heart and how the Lyme is attacking my heart. In the next couple of weeks he might put me on beta blockers. We first need to see what's going on with my heart structurally. So for now we are waiting on him to call and tell us what the plan is.

On the way to the hospital I told my mom that I was hoping I wouldn't have to wear a heart monitor for a couple days. Well lucky me, I get to wear one for a whole 30 days!!!

When the nurse told us I about ran away. But I was very polite and tried to contain myself. It's a really complicated thing and she taught us in 10 minutes.

There are four circular pads that go on my chest and stomach that have color coded wires. The wires connect to a monitor that is recording everything. There is also a huge cell phone that I have to keep with me at all times because the monitor sends the information through the cell phone to a computer. Someone is ALWAYS watching my heart from the computer and can contact me through the phone if there is a problem. I have to wear all this around my neck...pretty much like an adorable necklace. Try not to be jealous.

I have to charge the phone every few hours which is a little annoying because then I can't go anywhere because the phone is plugged in to the wall. The only thing on the phone is a screen that shows a beating heart and where the wires go. Several times today I have set off alarms because the wires fall off or something like that. Also, if I feel dizzy, light headed, faint, chest pains, or anything like that, I push a button on the monitor and then on the phone i type in what symptom I am having. So at random unknown times the monitor and phone send off alarms. If I have to submit a symptom, then that sets off alarms too. I'm not sure how this will work in public...

I think that is all we know right now. We were hoping for easy answers but we didn't get any. The doctor was very nice and helpful.

I hope you have a great weekend! I will update as soon as I know something. Thanks so much for the prayers!!