Christmas

I feel like Christmas came earlier this month with the news from Dr. Burt.  Now we celebrate. :)

IVIG

I had IVIG treatment this week.  This time around feels different.  Knowing that I won't have to endure this indefinitely, that there is an end in sight, has helped me get through.

I am excited and scared about the future and the journey that I am about to start.

The Phone Call Came

I got the phone call today that changed my life.  We spoke about what Dr. Allen suggested, getting SCIG more frequently instead of IVIG all at once every few weeks.

He asked me what I wanted.  I told him I wanted to be well again.  He told me that I do not entirely meet the trial criteria. :( :( :(

But (there is a but), he said he'd be willing to treat me OFF STUDY!!!  That's right!!!  I get to have the treatment!  I get to be well!  I get to be healed!  I get to live again!

There is still one major hurdle that we have to overcome, insurance approval.  I will start a new policy effective Jan. 1.  We pray and hope that there isn't a battle for coverage for this life saving treatment.

Chicago - He didn't say no...

12/02

Packing up the boys and all our stuff was a whirlwind.  We did well, got to my parents around 12:00.

We flew into Chicago in the evening.  Got to The Drake hotel around 7:30.  We were starving and ordered room service (I think for the first time).  We both ordered cheese burgers that really hit the spot.

12/03 

We met with Dr. Burt Wednesday.  They were running very late, an hour to be exact.  We went over my history (quickly) and my current treatment regimen.  He had me walk for him, stand on my tip toes (ha that was funny), and try to walk on my heels.  He took a gauze strip and asked me to tell him when I felt it touch me.  Jesse said I missed 6 touches on my legs.  

After my exam and talking he told me I wasn't as bad as most patients he sees and that it seemed like the IVIG was managing my symptoms.  I cried.  He told me, "I didn't say no. I don't want you to leave here depressed, I didn't say no."

I was really sad after the appointment.  I didn't know what to expect but I guess I expected more.  To drown my sorrows, we stopped at Cheesecake Factory on the way back and we got some Ghiradeli Chocolate Cheesecake for me to drown my sadness in...uber yummy. :)

12/04

Thursday we spent the day in our room mostly.  We walked to get breakfast at a local pancake place, but it was packed.  So we went to the closest Starbucks for some coffee and a bagel.  We then waited for an hour or so until it was an acceptable time for lunch and ended up at this place near the hotel called Doc B's Fresh Kitchen.  It kind of reminded me of a less nice Johnny's.  But the food was excellent and nicely priced.  Then we went back to the hotel as I had some work I needed to get done.  I worked, Jesse napped, watched tv, and read.  

Then it was time for dinner (we ate our way through Chicago) but before dinner, we wanted to look at a potential place to stay in the Spring (if we get the approval we are hoping for).  The place was nice, an apartment style hotel, tiny...very tiny.

We had seen an Indian restaurant earlier and thought it would be yummy.  It was, but man it was spicy!  We were only able to eat 1/3 of what we ordered and since the hotel had no refrigeration, we said goodbye to our leftovers.  We went back to our room (with a bottle of wine) and tried to relax.  Then the protestors started yelling and chanting outside on the street.  We had a hard time relaxing and unwinding knowing that we had to be up at 5:45 the next day.  I think we finally went to sleep around midnight, thanks to the bottle of wine we finished. 

12/05

Friday morning, we left the hotel at 6:35 and begin our walk to Northwestern.  My legs held up but they were hurting.  We arrived and went to the 7th floor to have my EMG & NCV tests done, no one was there yet except the technician, Vinnie.  He performed the NCV test, painful but bearable (I learned at Hopkins, never let a fellow perform the exam).  Then Dr Allen came in and performed the EMG.  This is the one I really hate!  They stick tiny needles in the muscle and then send electricity through the needle to test the strength of the muscle.  HATE IT!!!

We then met with Dr. Allen.  We talked for over 30 minutes about everything (my history, my side effects to IVIG, quality of life...etc.). He verified that I do have CIDP.  He also said that if I were his patient, he'd want me to try SCIG (subcutaneous immune globulin).  He did say, that I qualified for the HSCT (stem cell transplant) and that he would be meeting with Dr. Burt that evening to tell him just that.

So, now we wait.  Tuesday I will speak with Paula, Dr. Burts nurse, and she will tell me if I've been accepted into the study.

We wait!

We're going! No we're not, yes we are!!! No we're not...Yes We Are!!!

We've been on and off for several weeks now.  It's been painful.  Today, the day before we are scheduled to fly to Chicago, I received my self pay contract. The hospital will give a 40% discount!!!  We have to pay $2,100.00 up front and if we go under that, we will get money back.  If we go over that, we will have to pay more.  The good news is that this is the typical/average amount billed for the testing I'll be getting done.

So we fly out tomorrow night at 5:20, and arrive in Chicago at 6:30.  We will probably get to the hotel by 8.

Wednesday is a slow start as my appointment with Dr. Burt isn't until 4:30. Thursday is now a free day (this was going to be a day of blood draws, spinal tap, MRI) since insurance isn't paying, we are waiting on all those tests.  Friday at 7:30 AM, I get to enjoy some electrocution again with a NCV & EMG.  The NCV, tests the nerve velocity.  The EMG, test the muscle strength.  Then at 8:30, we meet with Dr. Allen to discuss my results. Then we fly home Friday afternoon at 2:30.  We will arrive in Baltimore around 5:30.

It isn't likely for us to get an official acceptance into the trials until Dr. Burt and Dr. Allen have a had a chance to discuss my case. So we are likely going to have to wait a week until we know.  More waiting!!!!!!

So that's the plan in an abbreviated form.