Lord It Hurts, But You're Still God: My Journey Continues

April 2010

My port was put in on the 30th of March. My first infusion of Remicade would begin the 2nd! Mom, Dad, Andrew, and I made our ever so common journey to Mobile early that morning. The treatment was supposed to begin at 9:00 am. We knew we would have paper work and all of that stuff so we got there a little early.

We get to the hospital and we run into problems. They had booked me in the lab...we knew that part. The part we didn't know was that insurance would not cover the Remicade treatment at all if I had it done in the lab or in the hospital. The only way they would cover the treatment was if it was in Dr. Rodriguez's office or done at my house by Home Health. Well this caused problems. They had told us there was no way to do it in the office that morning because two other infusions were going. So we were at a stand still. Well about this time it was like 11...I had been back and forth to the bathroom. I was impacted due to everything in the past month and I was bleeding with my bowel movements. It was so painful. It feels like razor blades are cutting you as you use the bathroom. Well I was back and forth to the bathroom the entire time while my parents were back and forth trying to get something fixed.

Meanwhile mom comes back. She had talked to the infusion nurse and she had said that after lunch to come back and something would hopefully be worked out! So we went to lunch. We came back and went to the office. Dr. Rodriguez had talked to the nurses and felt bad. The infusion nurse was going to give me my treatment. They had worked it out to accommodate me. So I finally began my infusion at 2:00 pm. The OR nurses came up to access my port because the infusion nurse hadn't had a Crohns patient with one and hadn't had a patient with a port in a while. The nurse accessed my port and I was pretty upset because I wanted somebody in there with me my first time because I was scared. They told me that they could come in once they accessed it. It didn't hurt. I was so surprised.

So she Dad, Mom, and Andrew came in the room and the nurse started my test dose of Remicade. After 30 minutes she reassessed me. I handled it fine. So she began the true treatment. With my size I took three vials of Remicade. Every 30 minutes she would come in and ask me how I felt. Every time that I would say fine she would up the flow rate. I started off with 60 ml/hr and ended up at 150 ml/hr. She said that was really good. She said that other patients would state that it felt like an elephant was on their chest. We figured maybe it was because I had a port and the other patients didn't. With the port having such a large vein/artery maybe it would disperse faster than just settling through a tiny narrow path.

30 minutes in - I started feeling really tired
1 hours in - I started feeling exhausted
2 hours in - I started swelling some and still exhausted
3 hours in - I still was swelled still exhausted but ready for it to be over I could
start to feel the joints stiffening but just mostly the exhaustion
3 1/2 hours in - OVER!!!! YAY!

Now when the treatment was over...they disconnected the fluids. She flushed my port with saline and then followed with 10000 units of heparin. This helps the blood to flow and prevent blood clots. Now for the worst part. Ok...remember I said the needle going in it didn't hurt. Well it hurt like heck coming out...it was so much pressure. Like I had told you earlier it is a non-coring needle...so when it comes out it seals as it comes out...it was ahhhh!!!

We went home after that and everybody just rested from this exhausting/crazy day!!

When I say the day I am counting the day of the surgery since I posted it as day one.