Thursday, October 2, 2014

The best doctors!

I have THE BEST doctors at the clinic in Nevada! 

 On Wednesday, September 24th, my seizures wouldn't stop despite many different medicines, so my doctors decided that I needed to stay overnight at the clinic (this very rarely happens. The clinic closes around 6pm every night and no one stays overnight). So Wednesday there were FOUR doctors (every doctor that works there) who stayed with me all night at the clinic. It was my main Lyme doctor (who will just randomly call to check on me even when I'm home, he's so caring and devoted), 2 Neurophysiologists, each with their own speciality, and then the critical care doctor. We all stayed in the critical care room because there are hospital beds in there. So my doctors all took shifts to make sure someone was always watching me. But for a couple of hours it was like the show, House MD. All 4 docs were brainstorming, trying to figure out how to get the seizures to stop because now they are every day, most of the day. So they all stayed up all night to monitor me, give meds to try and stop the seizures, and just brainstorm on treatment plans. Around 7:30am, they got up and started their day, and they didn't even get to go home, they just started another day of work. How INCREDIBLE is it that 4 doctors gave up their night and sleep just so that they could be with me and make sure I was ok. They could have easily sent me to the hotel so that they could go home to sleep. THIS is why we come to the clinic here in Nevada. They do not give up until they find answers and they really, really care. Im so blessed. Almost every time I seize, there's almost always one of the doctors holding my hand, singing to me, and staying with me until it's over. Thank you God for giving me such great doctors! 

Tuesday, September 23, 2014

PICC line is in

I got my 3rd PICC line today. The procedure went well! 
I'm ready to keep fighting hard to get better! 

3rd PICC line

Today I'm getting my 3rd PICC line. My veins have been used so much so they can't get an IV which is why I need the PICC line. I had a port for 4 years, my first PICC for 8 months, and my second PICC for a couple of months. I'm tired of being poked so many times to get an IV so I'm glad I'm getting a PICC line, but of course I wish I didn't need one but we don't have a choice since I have no IV access. 

 The procedure to put the PICC line in is at 1:30pm Nevada time which is 3:30pm Oklahoma time. They are going to try and sedate me a little so that I don't have seizures during the procedure. 

The PICC line goes from the arm, all the way to the heart into a bigger vein like this picture shows. The procedure isn't painful, they numb you first and then use an xray and ultrasound machine to guide the line into the heart. It's just a weird feeling to feel it go through your veins as they get it in place! 

I will update later today with how the procedure went! Thank you so much for all the prayers! God is good! 

"When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you." -Isaiah 43:2

Monday, September 22, 2014

Clinic day 1

Day 1 at the clinic hasn't been boring! We started off with an EEG and it was able to determine the cause of my seizures. I started having back to back seizures at the clinic and they went on from about 10:30 am until 5pm and they finally stopped after many doses of medicines. Tomorrow I'm scheduled to get my 3rd PICC line because my veins are so bad. Please pray that the seizures stay away tonight and that the doctors will be able to come up with a treatment plan for these types of seizures. Please pray that my procedure to place my PICC goes well tomorrow. I have the best doctors here. They all held my hand during seizure after seizure and didn't leave my side. God is good! Thank you for your prayers!

Sunday, September 21, 2014

Made it to Nevada

My mom and I made it to Reno, Nevada! We get to have a day of rest tomorrow and then my tests and doctor's appointments start Monday morning! We had good flights, I had one seizure on one of the flights but thankfully it was just one. Tonight I'm thanking God for the safe travel and the opportunity to come out here to see these doctors and receive treatments! God is good! 

Saturday, September 20, 2014

Treatment in Nevada

Today my mom and I are leaving to go to Reno, Nevada where my Lyme doctor is! We will be there a couple of weeks while I receive treatments. 

We are going to try and figure out more about my seizures. Since my last post, I've had 3 more ER trips because of seizures. Last Wednesday I was taken by ambulance because I was unconscious for so long after multiple seizures that wouldn't stop. They finally got them stopped in the hospital. 

I thought I'd answer some questions I've gotten about our trip! 

Are you flying or driving?  We are flying. The drive is 24 hours without stopping and I just can't handle that right now. 

Where are you staying?  We are staying in a hotel in Reno that's close to the clinic. 

How long will you be there? The plan is just a couple of weeks but we don't know for sure. 

Why do you have to travel to Nevada for treatments?  No doctors here in Oklahoma know anything about Lyme. When I was taken by ambulance to the hospital last week, the ER doctor was convinced I didn't have Lyme and therefore, he wouldn't treat me at all. He believes Lyme doesn't exist here, so he wouldn't treat me, even as I was seizing. So we left and went to another hospital where I was immediately taken to a room because they said they needed to stop my seizures ASAP, no matter the reason for them. The doctor actually treated me like a person and didn't want to argue the politics of Lyme. 

Another reason we go to Nevada is because of the doctor that's there. He is so good and caring and so is his staff. My doctor will just randomly text or call to check on me! They are like family to us. When I was in the hospital last Wednesday, he called to check on me, even when he didn't have to. He is the most hard working, devoted doctor we have ever seen. He works long days just to try and help his patients. I'm so thankful for he and his staff! 

I will try and update as much as I can while we're gone! 

I have an EEG Monday morning and see my doctor after that and then see another specialist on Wednesday so we will be busy! 

Please be pray for our trip and that we can stop these seizures! God is good! 

Tuesday, August 12, 2014

2 ER trips

Prayer warriors, would you please pray for me? I was in the ER Friday due to an episode with my heart. I have dysautonomia and inappropriate tachycardia which means my heart rate is way too fast and my autonaumic nervous system doesn't function correctly. I was started on beta blockers to try and help lower my heart rate, but on Friday I passed out and my heart rate was very high. I was also having chest pain and was shaking a lot. I was at my friend's house when it happened so they took me to the heart hospital and my parents met us there. In the ER, they got my heart rate down with IV fluids. They stuck me 8 times before they got an IV and even had to use an ultrasound machine to find a vein! So it took 8 tries, an ultrasound machine, and 4 nurses. 

They monitored me and sent me home once my heart rate was down and my cardiologist said I could go. 

I did fine Saturday, but I had another episode on Sunday afternoon. I didn't pass out but my heart rate was very high and I was shaking and had chest pain. Since we knew what was happening, we didn't go to the ER. We tried to get it down with my heart medicine and rest. 

First thing yesterday (Monday) morning, I called my cardiologist. They wanted me to come in that afternoon. My cardiologist decided to increase my heart medicine to see if that would help stop these episodes. I was supposed to go home and take the increased dose, so that's what I did. They also wanted me to take another medicine that would make me sleepy so I slept for a couple hours yesterday after I got home and took the medicines. 

When I woke up from my nap yesterday, I didn't feel well. I got up to go to the bathroom and on the way back to the living room, I yelled to my mom that I didn't feel well, but I didn't finish my sentence because I passed out. I passed out in our hallway which has concrete floors, so I hit my head and body hard when I fell. Apparently while I was still unconscious, I started shaking and my mom thought I was having a seizure. I woke up on the floor but passed out again very soon and kept shaking. This happened several times. When I finally realized what was going on, I was being put in the car to go to the hospital. 

At the hospital they were worried that I injured my head when I fell so they wanted a CT scan. They did blood work, a blood sugar check, an EKG, and then the head CT scan. Everything came back normal, praise God! With as hard as I fell, it's incredible that I didn't hurt anything! Everything hurt, but it wasn't broken or anything! 

They decided that the increase in my heart medicine made me get sick and then pass out, so that's what happened. They talked to my cardiologist who said to keep taking the increased dose of my beta blocker for my heart. They said it could take a couple of weeks for my body to get used to the new dose of medicine so I have to be really careful until I get used to it. I got to come home last night after they watched me for a while and my cardiologist said I was okay to go home since I didn't hurt myself when I fell on the concrete. 

I'm doing well today, just sore and worn out so I've just been resting. I have to be careful when I get up to make sure that I don't pass out again. I'm so thankful that I wasn't home alone when it happened and that I didn't hurt myself any worse than I did. And it only took 4 tries to get an IV in last night at the hospital  so that's better than 8 tries! 

Please pray that my body handles the medicine change and that I get used to it very soon. Please also pray that the medicine stops these episodes of my heart racing and me passing out. 

God is good all the time and all the time God is good! "My flesh and my heart may fail, but GOD is the strength of my heart and my portion forever" Psalm 73:26

In other news, last Thursday I walked a half of a mile on the treadmill in 9 minutes and did some weightlifting!!!!! I'm pretty proud of doing that!!!!