Two Months Out!

Thought I'd share with you what I hope is my last 15 minute of fame due to this whole ordeal! May is stroke awareness month so my story was in the Peoria Joural Star and also a local TV station ran the story they came and interviewed me for at the house a couple weeks back.
Other then that I'm very excited to say that I will be taking my last dose of steroids at the end of the week! Bad thing is that going off of them will mess with my blood thickness levels which we're still trying to regulate. After being excited about finally being in the correct range on Fri., I found out at my blood draw today, I'm on the low end again. Boo.
Here is the link for the TV story http://www.hoinews.com/news/news_story.aspx?id=136263 where you can view the clip.
Below is the story from the paper...here's a link to the story where you can view it big enough to read. You have to scroll down on the left to page 12 and click the title of the article. http://adserver1.harvestadsdepot.com/peoriajstar/ss/079499/

Home Sweet Home

Made it home last night from Mayo with a lot of great feedback and confident remarks from the docs we met with. After reviewing the original films from Methodist, the Neurologists were still confident in what they'd told me regarding the reasons for the stroke, being able to get off all meds in a year, and the seizures being solely induced by the stroke. I was also shown the films for the first time and shown exactly where and how everything happened...wow. The true miracles of what your body can handle, with the grace of God, is really humbling.

We also met with a nurse specialist on Thrombophilia (clotting) and got all our questions and more answered about being on blood thinners and how they should and should not affect daily life. It was great to hear that life really won't need to be lived in a bubble...rather, my new motto should be consistency and moderation mixed with some common sense. That's in everything from eating to exercise.

The final piece to the puzzle was meeting with the Hemotologist. He was extremely straight forward and wanted to make sure I understood every aspect of the genetic mutation (Factor V) I have. The main thing he stressed was how important it is to keep my blood thickness ratio (INR) levels bw 2-3. It hasn't been there since I left the hospital and he bumped my blood thinner dosage up and insisted I get the level checked in 2 days...I'm very pleased to report that my level this afternoon was 2.1! Everyone we've consulted with says how hard it is to regulate because virtually everything can affect it's abilities...hydration, activity level, diet, medicines, weight gains and losses..etc.

All in all we're thrilled with the second opinion! Here are a couple more pics from the trip and one of my brain! I'm no doc, but the white shows blood flow and you can see where it stops when it gets to the top which is where the clot prevented blood flow to a huge part of the front of my brain.

The back of my head is on the right, you can see how the flow stops a little then comes back then completely stops...ta-da a stroke.

More of the Mayo campus...there are beautiful gardens and flowers all over.

Not sure if you can read it...but Mayo Clinic is etched above this doorway.

Reporting Live From Mayo

We made it to the great state of MN and had my initial consultation with Neurology this morning at the lovely hour of 7 am. It took a mere 3 hours to go over everything...then it was off to get some blood drawn of course! We're already feeling great about what will come from this trip. Since they've dealt with cases like mine, they speak with a lot of confidence about the factors causing the kind of stroke I had as well as treatments. They were also very supportive of what they called "the perfect treatment" I received in Peoria.

Here's the basics of what they said.(Keep in mind this is prior to their review tomorrow of my actual films from the CT scans and MRIs from my hospital stay. Then we'll meet with them again Wed. to see where we stand and if they want to run more similar tests.) As far as the bloood thinner and seizure medication being life time treatments...they don't think that's the case at all. A year is more of the timeline they're thinking! Yay! At that point, I'll need to have more testing on all of the blood clotting factors...can't have them while I'm on the meds. Also, epilepsy is not a diagnosis they are convinced of because the type of stroke I had commonly occurs with seizures. Double Yay! They are also very encouraging of my weening off the steroids, which I've already begun...thanks goodness because I'm running out of stretchy pants that are ok to wear in public! In the meantime, considering this is a blood issue, I'll be meeting with a Hemotologist as well.

One other thing I asked about was the extra fatigue I've had in the past week and what to attribute that to. They said it is not related to my blood thickness or change in that level, rather it was probably due to me getting back into the swing of higher level exercise and more regular daily activities (and mom and I getting so much of the house packed up!). Basically they said I need to remember that I'm less than 2 months out of a major head trauma that severely affected my body so I need to remember the word recovery should still be in my vocabulary as frustrating as that might be for me! I'll take that as a compliment!

We'll keep you posted!

This just doesn't do it justice! It's huge!

This is me at the bottom of the Mayo builing above.

Jake has decided a medical career wouldn't be so bad...too bad the employee entrance was an exit only for him!

900+ pages!

Lea Ann here! Look at me...finally posting to the blog all by myself! Typing and everything...although a little slow with the right hand still. I had my re-evaluation for PT and OT this week and my recovery continues to be amazing. I did the same tests I did when I first started and the results were definitely different! For example, in looking at the fine motor skills in my right hand, there is a peg board with 16 small pegs that you pick up and put in the holes then remove one by one. My time was a very frustrating minute and a half and this time it took me a mere 23 seconds!!! For PT one test to judge endurance and recovery time is doing step ups onto a box at a set pace for 3 minutes then check your heart rate after a minute of rest. Initial eval showed my heart rate at 111 beats per minute after the rest and this time it was at 86. So all the tests basically show that my strength, endurance, balance, coordination and so on are progressing at the best rate I could ask for! YAY!

This week I have been fighting some extra fatigue for some reason. My INR (blood thickness) count was low again and continues to frustrate the docs on determining a therapeutic dosage of the blood thinner. I've been told the fatigue could be associated partially with my blood being a little thick, but also with other factors like weening off the steroids, maybe having some kind of bug, an overly worrisome mom and husband...oh, wait I may have made that reason up! :) Anyway, I'll keep you all posted next week during our trip to Mayo. Jake and I head up there Sunday. Hopefully we'll come back with more answers! And the 900+ pages title...that's how long my medical records are from my hospital stay! Had to go pick them up to take with us to Mayo...I skimmed them and hope the docs at Mayo get more out of them then I can! The terminology lost me after "Heuser is a 26 year old female..."

Also, had a couple more interviews for local stories...here are some pics from when they came to the house. It will air on the 19th and we'll link it to the blog.