Monday, 22 April 2013

Salt Lake-Part 4

Salt Lake.. One of the best hospitals for head trauma and so I was very thankful they picked that hospital.

After I had been moved to a room, I was not allowed to have anything by water, no food.

I was dehydrated and very hungry but they wouldn't do open heart surgery with a full stomach so I waited. They had a really tough time keeping an IV in my veins and finally at two am they called in a specialist.  My arms, hands, and feet were full of bruises and I was officially tired of being pocked.

At 8 am they rolled my downstairs to have a camera put down my throat and to view my heart.  I figured this would be a simple procedure but I was very wrong.  The nurses prepared my and numbed my mouth and throat and they half sedated me.  My parents couldn't be in the room when this was happening and that was the worst part of the whole procedure. I woke up half way through the procedure with the scope still down my throat and started gaging.

After they brought my parents in and we talked about the infection on my valve, we had to wait a few hours to know if I needed open heart surgery.  I was wheeled back to my room, they same in a few hours later and told me I didn't need surgery!   Thank the Lord.

I was still having issues with my IV so they decided to put a pik line in my arm.  It's similar to a full time IV that go in my upper arm and through the vein and ends right above my heart.  The point on a pik line is so we can shower the heart with antibiotic.

I spent the next three or four days, just receiving antibiotics and sleeping.  Christmas was a few days away so the rush to get me home for the holiday was apparent.  My mother was taught how to give my antibiotics through my pik line, as I had 6 weeks to take antibiotics.  Two days before Christmas we were released and we headed home!

Until next time, within a week of being home I was back in the ER.

Friday, 23 November 2012


I know I am a day late but I thought I would write a few things I am thankful for..

My family- It's rough being parents and siblings to someone with an illness.  They are always at the hospital and support me know matter what.  They all handle it differently, some like to talk about it and others are in denial but as long as they are coping, its all good.

My friends-They are amazing.. pretty simple.  Always making sure when I am sick that I am taken care of.  They are there at a moments notice and are always looking out for my health.  I am blessed to have such supportive friends in my life.

God-Some people wonder why I have such a positive attitude.  I can't imagine allowing anyone else to have this condition. I am lucky he picked me, I can handle it and it's made me stronger.

My Health- I am on a good streak right now, haven't been in the hospital since this summer.  I am coming up on the three year anniversary and I am always so thankful that my life turned out just like it did!

Doctors-I have some of the best doctors possible.  They are extremely knowledgeable and care greatly about me.

All of you-You have supported my parents during my challenging times and we can't thank you enough.

I have so much more to be thankful for...


Tuesday, 16 October 2012

Part 3... Salt Lake City here I come

Part three… I am almost done with the majority of my story now.  Bear with me.  Okay so let’s go back to Bozeman hospital for a few moments. As I was lying in bed I tried to be as optimistic as possible.  I knew God had a hand over me, and was in full control.  The first question I asked after receiving a probable diagnosis was “can I have children in the future?” Yes, I know I am years away from childbirth but having kids is important to me and I was hoping that this condition wouldn’t affect my ability to have kids.  I was informed that my life was going to change forever and I remember thinking, no more just getting by.  I want to be the best person I can be.  God’s hand and feet, he has allowed me to survive and I am going to make the best out of my future. 
Ok back to the airplane ride, once in the airplane I was asked to tell my story to the people riding along in the plane with me. They had never had a patient who was awake or could talk before.  That’s when I knew it was serious. They asked me about my life and all about school.  It was nice they didn’t pry or ask medical questions, they generally cared about me and where I was headed in life.
Once we landed at the airport, I was loaded into an ambulance and taken to the Salt Lake University hospital. I forgot to mention this before, but my dad had called my Grandma and Grandpa Rose and they beat me to the hospital, also our good friend and nurse Jane was at the ER before I arrived.  As soon as I arrived at the ER they had planned on doing open heart surgery and replacing my mitro valve with a pigs valve.  I got to the ER and was happy to see friendly faces and get hugs from people I love.  They had to stop all food and drink by mouth in case I would end up having open heart surgery, but I was so thirsty I could tell I was going to start being affected by lack of water.  My grandpa held the door while grandma gave me some ice chips. J
An ER doctor came in and quizzed me about all my medical history, and after I explained how I was feeling etc. she asked if I was sure these were not bad migraines.  I thought my mother was going to come unglued.  We simply told her we had crossed that bridge a long time ago.  They decided to not do open heart surgery right away because I looked so “plump and happy”.  
For those of you unfamiliar with Salt Lake Hospital there is a children’s hospital right next to the University hospital. I was 17 and a half when I was airlifted so they decided to start treating me like an adult.  Secretively, I wanted to be in the children’s hospital, it was around Christmas time and Santa visited on a regular basis at the Children’s Hospital.  But they stuck me in the grown up one, and on top of that they put me in the head trauma unit.  I will let your imagination travel for a moment…. I was the youngest patient by 35 maybe even 40 years. Stroke patents, brain trauma, and brain tumors and then there was me and at that moment they didn’t think I was having strokes so I didn’t really fit in.
More later… Details on my rough stay in SLC and then my 6 month recovery back to my “normal”.

Monday, 8 October 2012

Part 2-My story

After realizing that I was having a stroke, I text my parents who happened to be outside the car fixing the flat tire.  As soon as they came over we called my neurologist in Helena and she said to go straight to the ER in Bozeman (as many of you know I can be stubborn). So, when we got to the hospital I refused to put on a gown because I was convinced that I wasn't sick. When we checked into the hospital they ran some more MRI's and then knocked me out for a few hours. Once I woke, they decided to do a spinal tap which would help them rule out a few odd things and they wanted to save some spinal fluid in case I  would need it in the future.

I am not sure if you have had a spinal tap or seen one, but it was scary.  They stick a large needle in a sac in your back and tell you if you move, you might be paralyzed. I was laying on my stomach and right in front of me was a screen. I watched the whole thing.  After testing my fluid, they ruled out MS and a few other conditions.  Dr. Josh Knappenburger happened to be touring the hospital and he would become the new neurologist in Bozeman.  They called  and asked him if he would come take a look at me and see if he had any ideas. He walked in and the first thing he asked me is if he could see my feet.  Right away he noticed all the blood clots in my toes, feet, fingernails and hands. After that he began to question me on my life style (my condition is often seen in IV drug users, so I had to get all the drinking and drug questions out of the way).  At that point in my life, I had only had one or two drinks and smoked one cigarette so we ruled out the condition due to IV drug use. 

He looked me over and asked me a few more questions and then told me to sleep while he went out and made a phone call. As soon as my dad arrived at the hospital he took my parents outside and told them that I needed to head to Salt Lake.  My dad said no problem I will head home and shower and we can be on our way.  Doctor Knappenburger said, "I don't think you understand, I ordered an air flight for her".  They came in and told me that a plane would be arriving soon to take me to Salt Lake and that my mom would be riding with me and my dad would wait until I made it there alive before he came. 

I was frightened to say the least!  The ambulance came and took me to the airport at around 8 pm that night.  After noon they had cut me off from all food and liquids because they first thing planned when I arrived in Salt Lake was open heart surgery. After saying good bye to my dad and being loaded into the plane on a stretcher, we got the oxygen hooked up and took off.  Riding in the plane was a nurse, EMT,  pilot and my mom.  I was a stroke patient so every 10 minutes we did a stroke test, and they flight lasted under and hour. 

To be continued... 

Saturday, 22 September 2012

My Story Part 1 of 4

So I have been thinking about blogging and letting everyone know about my life with Anti-phosphate Lipid Antibody Syndrome for a long time now and I finally decided it would be the best way to share my story and stories with my friends and family.

I am going to start at the beginning and slowly tell my story and how I got my diagnosis and then I will just tell about doctors appointments and everyday living.

In August of 2009, I had a dentist appointment to get my cavity filled; that was the day that changed my life.  After the appointment, I started to get sick, and sicker.  I saw every sort of doctor there was and no one had an answer.  Finally one doctor suggested that I was depressed and wanted to put me on antidepressants.  I had no reason to be depressed; it was my senior year, I was running cross country, headed for Kansas State and loving life. I decided not to take antidepressants and just pretended everything was all right.  Early in December I noticed that my hands were starting to get numb and my vision was becoming blurry.  I tried to ignore it, but slowly the numbness began to be all day and it was getting worse, so bad that I would drop my pencil while writing.  After lunch I would go sleep in my car for 2 or 3 hours before basketball practice and I couldn't figure out why I was so tired.

On one December day I knew something was really wrong, I had numb hands and arms all day and when I went into the locker room to get ready for practice, I noticed that I couldn't wink or when I smiled only one side of my face moved.  I called my dad and asked him to come to practice and watch. At practice they would pass me the ball and only one side of my body would go to catch the ball.  We were doing the zig zag dribbling drill and I was guarding a girl on my team and the moment she switched and made me run to the left I collapsed and ended up on the sidelines sitting with my dad.  My dad took me to Urgent Care in Belgrade and they suggested that I see a neurologist.

We didn't have a neurologist in Bozeman, so they suggested a great doctor in Helena. I headed up there and she said that sometimes when girls gain weight, a vein in their skull is pressed against the brain and causes numbness and blurry vision.  She suggested I get an MRI. The next day, I headed into Bozeman to get an MRI.  I had never been sick in my life and never had an IV or MRI, so this was a rather scary process for me.  After my MRI, I went back to school and participated in my last basketball practice ever.

The MRI center called while I was at practice and told me that they saw some unusual things and I needed to come back in the a.m. for another MRI; one of the most frustrating parts of being sick, is that they don't give you direct answers.  After the MRI, we were headed back to TF and they called and said in the a.m. we needed to head to Billings first thing, and have a dye injected into my leg to look at my heart.  The dye would allow the doctors to watch my blood flow to see if I had any clots.  Little did I know that Billings called and told them I wouldn't make it there alive and suggested we just go straight to the ER in the a.m.

In the morning I woke up and felt worse than ever, my mom's van had a flat tire and I was laying in the homemade bed in the back. While my parents where changing the tire, I had my second major stroke....

To be continued.