Infusion #3

Yesterdays infusion was by far the worse one that I have had yet. I didn't have a scary reaction like the last one where I couldn't breath and had sharp throbbing pain all over my body but I didn't have the same kinds of reactions this time just on a smaller scale.

I was very excited that the wonderful team that Dr. Tobin has were able to get me scheduled for my infusion yesterday in such short time. This time my husband was going to go with me to the infusion to keep my company and make sure that I was alright. Being alone is situations like the last are really scary. MY appointment was for 12 PM in Bellevue at the UW Specialty building. We checked in waited and shortly was greeted by the nurse that was going to be working with me. She brought us back and to the infusion area and there was a choice of a chair or a gurney. I chose the gurney so that I could lay all the way down. The nurses name was Ginger. Ginger took my vitals and gave me Tylenol and Benadryl. I was upgraded from just Claritin to Benadryl after my reaction to the last infusion. The Remicade was mixed quickly. A lot quicker than Northwest Hospitals was ever able to do it. We got started so much faster and it was really nice. Ginger put in my IV and hooked me up to my line of Remicade. We started off slow on the rate of 10 ml per hour. Ginger would check on my every 15 minutes and increase the rate until I hit the max of 250 ml per hour.

 Mt IV the nurse put in like a pro. Didn't even hurt.

My wonderful husband.

Me with my smarty pants glasses. Just got them a few weeks ago.

Within the first 15 minutes I could feel my breathing not feeling so right. I felt like I had to cough and if I inhaled deep I would cough. I didn't say anything because I wanted to see if it was going to get really bad first. I know that might sound dumb but I didn't want to call anything too soon. When she bumped me up again I started to feel those throbbing pains in my back. They were radiating down to my knees and every time my heart beat I could feel the throbbing. I was given a heating pad by the nurse and it was a little better. For the next two checks and rate increases I started to feel cold. I asked for 2 warm blankets. I began to get the shivers so bad that I felt like it was uncontrollable. I tried my best to curl up and get warm but for a good 20-25 minutes I as just shivering. I know that shivering is the way of the body keeps itself warm or warms itself up so I just let it happen. After I was able to get that under control my back started hurting again. the Benadryl hit my really hard after the first hour and a half and I was so tired and felt a little bit high. I couldn't think or talk much. It was too taxing on my brain at that point. I laid down and tried to sleep. I didn't really sleep because every 15 minutes Ginger was in the room taking my vitals. But  during the last stretch of the infusion I got an incredible head ache. It was so bad and radiated into my jaw from my temples. I told the nurse about that and she asked if this had ever happened before and I said no. I just dealt with it hoping that it would go away after a while.

In the middle of my head ache phase.

We finally got to the end of the remicade. At the end they transfer the line to a bag of saline and let the rest of the Remicade finish. I am not sure if the nurse execrated the speed for the last little bit but I could feel my self getting hot and my heart was beating faster. My head ache pounded and my teeth ached. At the end the nurse agreed to let us leave. She mentioned that usually they keep people for an additional 30 minutes just to monitor them. I had never had this at NW Hospital so she didn't see why I couldn't leave. She did take my vitals one last time and saw that my temp and Heart rate had jumped up. She gave me the direct number to the nurses station in case anything happened after I left so that I could tell them right away.

I literally felt exhausted from all the things that happened during my 3 hour infusion. I hit the bathroom before we left and when I looked in the mirror my eyes were so blood shot. I walked to the car  with my husby and just wanted to lay down. When we got to the car I could feel a hive on my arm so I took more Benadryl of my own just in case. We had a long drive home with a pit stop for lunch. By the time I ate something I did feel better. I might say that some of what I felt after wards attributed to not having much to eat all day. By the time we got home the second dose of Benadryl made me a little sleepy but I was able to watch the Seahawks game with no trouble.

A little hard to see but can you see those red veins?!

These are some of the things that can happen during an infusion. Everything in Orange I experienced at one point durning the infusion.
Allergic reactions during or after the infusion—hives, difficulty breathing, chest pain, high or low blood pressure, swelling of face and hands, and fever or chills.

This morning though I woke up and every joint in my body is incredibly painful and my muscles are sore. From the list of side effects this could all be normal.... or a sign of HBV or Lupus like symptoms.   I called the nurses to tell them how I am feeling and they said to just take tylenol today for the pain and to call tomorrow with an update on how I am feeling. The Doctor may not want me to have another dose. At this point I feel like I might just be screwed and never get better. People with this disease lose their entire colon and have to get an ostomy. The Ostomy isn't the end all be all either. I have read about people getting Crohn's inflammation in the Ostomy. What do they do then? Some people get so sick that they can't fight anymore and die. I don't want any of that to happen to me. I certainly don't want to have some medication make me feel worse or cause a whole new list of issues like cancer. I just don't know what to do right now.

Until next time XOXO!

Tick tock... Time waits for no one.

UPDATE!!


I currently have a huge dilemma. I am at a very high risk of missing my next Remicade infusion and I don't know what the consequences of that might be. On Monday this week I called like usual to schedule my appointment for the following Monday the 6th and very unpleasantly found out that my Doctor was no longer practicing at that office. He had left to go to a new clinic. This put a very big kink in my plan. When I had my follow up appointment with Dr. Petty the Surgeon that saw me in the hospital at the beginning of September we made a plan that I would get my last infusion with Dr. Tobin in Seattle and then be seen by a new Gastro, Dr. Huang in Puyallup. The reality now is that Dr. Tobin is gone and the new doctor may not approve my infusion with out first seeing me in clinic which he is booked out for weeks. The other problem is that Dr. Huang is booked out until November 5th. This makes me so frustrated and full of stress. When I get stressed and feel like I am basically SOL I cry a lot. It just breaks me down.

The evening of my last post I was admitted into the hospital, 9/4/14. It was Game night, the Seahawks were playing the Green Bay and we had friends over at our house to watch the game. That whole week I had been feeling terrible and had just had a reaction to my antibiotic. As the game was getting over I was sitting on the couch so that I didn't cause my self any pain from sitting in certain positions and noticed that my belly button had an itch. When I went to scratch it I felt wetness. My mind immediately went into WTF mode and I got up calmly and walked into the kitchen to see in the light what exactly was going on. I looked down and there was yellowish colored pus coming out of my belly button. Being that this had never ever ever happened before I started to freak out. Now all the sudden I realized why my belly button had been hurting so much for the last week. I had an abscess in or around my belly button!!!! Robert had already started to follow me into the kitchen and by the time I figured it all out he was there asking me what was wrong. My eyes already filled with tears I showed him. He asked it I wanted to go to the ER and I said yes. He calmed me down and told me to pack a bag. (because we both knew where this was going to end...me in a hospital bed). So that is what we did. I packed a bag said bye to my friends and we drove over to the ER in Puyallup.

My IV. My old friend.

 I was seen by triage and waited for a room in the ER. Once in there I told the doctors my history, which by the way is so tiring. Every time I go somewhere I have to re tell my whole life story almost. I am not a talker so it is really not fun for me. I had a CT scan and the images were seen by the ER doctor. He made the decision to admit me and I went up to a room around 12-1 am. Dr. Petty was assigned to be because they first thought that they were going to need to put me under and drain the abscess that I had. Dr. Petty is the most awesome doctor. I wish he were a gastro so that I could see him all the time. He told us that I had two lovely abscesses. Not only the one that I have been dealing with in my Colon/Uterus/Bladder region but also a very small one had developed in my belly button. First he said that he might want to have radiology do some kind of procedure but I have been and done that kinda thing and I never want to do it again especially since your awake for the whole thing. The second idea was to take antibiotics and GET TO GO HOME! I was on the going home train already. Two nights in the hospital is enough for me. So that is where I was left. I went home and took 2 weeks worth of antibiotics. My follow up with Dr. Petty was good and now I am in this predicament of not knowing if I'll be able to get my Remicade.

Luckily I have located Dr. Tobin and am going to see if he will approve my Remicade and maybe I can get it done somewhere in Bellevue where he is located now.

Wish me luck that I can in fact get him to at least approve the infusion with in the next week.

So good news came last week. I called to reach out to Dr. Tobin and I was able to talk to his coordinator. Interestingly last wednesday was his first official day at UW in Bellevue. The coordinator was so nice she worked really hard for me to get my infusion approved for Today 10/6. I am so happy that I didn't have to delay my infusion and I get to stay on track. Thanks to anyone who did wish me luck or sent good vibes, prays etc. It all worked because today I go in at 12!! 


Love you all XOXO!