Well yesterday was my second infusion treatment of Remicade. It felt like my first treatment because everything was much different. As I have been telling you all Dr. Rodriguez had set it up for Home Health to come out. He felt that it was too much on me to drive the long way to Mobile back and forth to receive this powerful drug. He wanted me to be able to be as relaxed and comfortable.
The treatment was supposed to be that morning, but the company who was supplying the pump and my Remicade became overwhelmed that morning. Mrs. Rene called and asked if 2:00 pm would be fine? I was fine with that because 1- I had no sleep the night before. This week has been terrible for me physically. My body has been doing everything wrong that it possibly can. Crohns was winning physically this week...not mentally or emotionally...but 100% physically. 2- I wanted Mrs. Rene to do my treatment so if I had to wait later in the day that was absolutely fine.
Well Mrs. Rene got here about 1:45. We had time to hug and chat a little. Andrew finally got to meet her personally. He has heard so much about her from me. Well we decided to go ahead and fill out some papers while we were waiting for Mrs. Julie to bring the rest of the supplies. Mrs. Julie arrives around 2:45...I fill out more papers and she shows me the pump. Ok...now I'm a nurse I know all about pumps, IVs...all of that! This pump was so NEATO! Ok...so I will tell you all about it. 1- It was tiny compared to the ones we have at the hospital! 2-It was portable so if I needed to go to the bathroom or anything like that I could take it with me 3-It had a little fanny pack bag that it fit in so that if I needed to walk around it could go in there and tie around my waist. 3-It had a specifically set flow rate so if the pump shut off it would automatically set back to that rate when it cut back on. I forgot to take a picture of the pump, but I did take a picture of the bag. I promise next time to take a picture of the pump because it is so cute.
Well I stayed in the recliner, because that is how most infusions are taking. It does not feel good to lay down completely because it puts a lot of pressure and fluid on the chest and it doesn't feel good to sit up perfectly straight. Recliner = perfect. So Mrs. Rene accessed my port! She did a great job! :) She then flushed it and connected my Remicade. Mrs. Julie showed me how to set the pump and they left. Mrs. Rene started the Remicade. As soon as she hit the button I felt light headed. I'm telling you...this stuff is strong. After the light-headedness I could smell and taste it. It's amazing how fast you can feel it running through your body. So it took my body a little while to calm down from the rush of everything. I told Mrs. Rene about what you feel with the Remicade and how it goes from one side effect to another. Well I started to feel my throat close up a little so I knew I needed to take another Benadryl. You are supposed to time that Benadryl and pain medicine (mine being Darvocet) 30 minutes EXACT before your treatment. Well since Mrs. Julie was running a little late it wasn't EXACT. Andrew gave me my Benadryl and I felt it stop swelling and stay at the size it was in about 5 minutes.
Mrs. Rene and I just had sweet fellowship together. We talked about everything, but everything always led to the most amazing person in our lives...CHRIST! Like I said...we had such a sweet time of fellowship. How precious is that. She is working...I am having a treatment, but we could just have such a sweet time together! As I told you in my previous post Mrs. Rene and I have always had such a special friendship...yes 20 years age difference, but we are so much alike it isn't even funny. That shows you how awesome God is at His job. He brings people together that need one another so that His strength can come in the form of that friendship. I cried, she cried...but it was tears of thanking Him for literally EVERYTHING!
About after 30 minutes into the treatment I could feel the exhaustion hitting, but it was so nice to have Mrs. Rene talk to me because it helped me to keep my strength.
After 2 1/2 hours the treatment finished! We were both excited for me, but at the same time I was sad because I didn't want our little "church service" to end. There was a little bit of the Remicade left so we programmed it to run in. After that Mrs. Rene flushed my port with 2 10cc syringes. She is such a great nurse and she knew was so precise in everything. Instead of just doing a slow flush she pushed it hard. Reason being it starts a swirl of the fluid through the port which makes all the Remicade that is left in the port flush through. I started laughing because it took my breathe and made me dizzy again. It really makes you fee like you are going to pass out. I told her what it did and she laughed to. I have never been high in my life...never tried a drug, but if I had to guess what "high" feels like, it would be that...lol! I wouldn't like it very much! After the flush, she also flushed my port with Heparin. As I explained before that is to keep the blood thin so that it does not clot in my port. That is something you never ever want to happen. Can lead to lots of problems.
When she removed the port I could not believe it. Compared to them removing it in Mobile it was a major difference. I remember explaining to you all that it was like them playing tug of war with my chest and it made me want to pass out. Well I mean it still makes you feel the pass out, but it did not hurt, and the pressure was not even compared. I couldn't believe the comparison. I was like Mrs. Rene...you did so good! Well to me it was wonderful! That was only my second time and her way felt so much better than the way they removed it in Mobile. She said that she just stabilized it well. Then she said it wasn't me it was God. We both smiled! We had talked about that during my treatment...about how God had called both of us into nursing and that everything we did good it wasn't because of us, but because of HIM! It bled some and we just held a gauze up to it.
We gave our hugs and goodbyes and Andrew took our picture! We hugged again...her hugs are the BEST! We told each other we loved each other and I just thanked her over again! Andrew let her out and she headed home. I looked down and I have a pretty tub for my home now lol...it is my treatment tub! It has all sorts of stuff that involves my port in it. Well Andrew tucked me in on the couch and I knocked out. I woke up and had a little trouble breathing so I sat up. As I said before the Remicade puts a lot of pressure and fluid in your upper body. I would have freaked out but it is just part of the side effects. I took another Benadryl for the swelling, itching...and everything else. I also took another Darvocet for the pain I was starting to feel through my body.
Knocked out again. I slept in the recliner because I knew it wouldn't be a good idea to sleep in the bed. I was so thankful because I actually got to sleep in til about 10 this morning. I didn't go to bed til almost 2, but still that is good sleep compared to what I have had lately!
Overall...I'd like to thank God for in spite of everything He is still blessing me beyond what I deserve. I would like to thank Mrs. Rene for allowing God to use her and for wanting to be my nurse. She had actually told the lady that was going to do my treatment that I was her baby and she was going to do it...that meant more to me than she will ever know. Thank you to Andrew...bless his heart...he didn't want to leave our side! He takes such good care of me and doesn't even complain about it. My mom and dad for checking in on me while they were at work, and helping me when they came home. Next to my sweet Amy. We talked that morning and it blessed my heart. She is a true best friend and our friendship foundation is based on our first love, Christ. During my treatment she texted me to make sure everything was going ok, and later that night was still checking on me. How sweet that everything she is going through she is checking up on me. I love all of you and wouldn't know what to do without each of you in my life.
Pictures below - night before treatment, day of treatment, and today (day after treatment) :)
Day of treatment! This was like 4:00 am!'
I did not sleep at all because my Crohns was
not allowing that to happen. My stomach was swollen
up again, and ever got bigger later.
Mrs. Rene and Me after my treatment!
This is the little fanny pack thing
that I can carry pump around in. I didn't
carry it anywhere, because you just don't
feel like it.
Today. Day after treatment with my angel!