Wish Me Luck

Well here are just a few recent happenings...

The day I got sick and ended up in the hospital, I had an appointment with my rheumatologist. I had been waiting for this appointment for a month. Ever since she gave me steroid shots in my fingers last March and April, they were doing really well. But in August when we were on our camping trip I noticed that they were starting to hurt again, and then I noticed that the first two fingers I got the shots in were really swollen. I posted a picture of that in another post. The rest of my hands started hurting a lot so I called the get an appointment. The soonest they could see me was a month away. I thought I was going to die-even clicking my mouse at work hurt. So I asked one of the physiatrists that I work with if there was anything over the counter that I could use to help in the mean time. He's a really nice doctor. He said there was a prescription cream I could get that would help, and said that my primary care doctor would probably call it in for me. So I called, and they actually wanted to call me in something different, but that was ok because it has been a lifesaver. Anyway, I finally had this appointment and I was hoping that she would just give me more shots. She didn't really want to and said that it's not something that they usually do numerous times. She wanted to give the Remicade more time to see if it would help. But then at the same time she told me that Remicade alone usually helps GI stuff, but for arthritis, you usually need another drug called Methotrexate along with the Remicade. The bad thing is you cannot take Methotrexate if you are trying to get pregnant, are pregnant, or are nursing. :( So I left with nothing being done, just hoping that the Remicade would start to work. I have another appointment in 6 weeks from that day.

I had an appointment last Wednesday with the GI surgeon, as a follow up from being in the hospital. We talked about our options and ultimately decided to do nothing right now, which I knew she would say and I am totally ok with. She said that it's good that the two obstructions I've had resolved on their own in just a couple days. She said that the x-ray with the contrast that I had in the hospital did not show any active Crohn's or inflammation that would cause an obstruction, and that's why they think it is scar tissue. She said if there was active Crohn's, she'd be more likely to go in and fix it, but surgery just causes more scar tissue, so we are going to try to avoid that right now. If I get another bowel obstruction, we might have to change our minds. I told her that the Remicade has been working well, and that I'm not having pain from the fistula, so are not going to rush into surgery for that either. I wish I would have asked her what I should do if I get another obstruction-should I go to the hospital as soon as I'm sure that that is what's going on? Or wait until it 's really bad and I'm throwing up. I like to wait because sometimes they will resolve on their own. I think if it happens again I will call her and ask what I should do.

And now the bad news. This has ruined my week and it's all I've been able to think about. Last Monday I was receiving my Remicade infusion and the nurse and my doctor thought that I was having an allergic reaction to it, so they stopped the infusion and the doctor said that we will probably have to switch to Humira. It's a biologic drug like Remicade, but is a shot you give yourself. It can also be effective in helping fistulas heal, but not as good as Remicade. :( :( :( :(
Here is what happened: I was almost done with the infusion (let it be noted that most reactions occur at the beginning of infusions, and this was at the end). Anyway, I started to feel a little sick to my stomach, but it wasn't that bad and I did NOT feel like I needed to throw up or anything. The nurse asked me if I was ok and I told her that my stomach hurt a little. She immediately got me a container in case I needed to throw up. I started coughing and she started asking me if I was ok again. OK- remember how I said I had the flu in the last post, with a sore throat and cough right after I came home from the hospital?? This was my same cough and I told her that. I was getting over it and that was why I had not really coughed before hand. Then she asked me if I felt a "lump" in my chest, or a heaviness. I said no at first and she kept asking me and then I kind of felt like I did. I felt like I needed to take a deep breath, and when I did, it was kind of hard to do. Honestly if she hadn't asked I probably would not have noticed. That is how insignificant it was. But she checked my oxygen stats and they were fine. She asked me if I wanted some oxygen on and I said no, I was fine. Then she checked my heart rate and it was 121.

Ok side note on the heart rate-clear back when I had my colon removed, my heart rate was really fast. Three years ago I was noticing my heart rate was fast a lot, and sometimes I would feel short of breath. Dr. Smith had me get an EKG and a chest x-ray that came back normal. He was concerned I had a blood clot, since I had had them before. My symptoms went away and I stopped thinking about it. The last two times I was in the hospital and every time I have any doctor appointment I am always asked if my heart rate is always that fast. I say yes. Sometimes it is faster than others, sometimes it is only in the 90's (normal is 60-100). I had an appointment with my primary care doctor an HOUR before my Remicade infusion, and my heart rate was 121. My doctor was a bit concerned and said if I ever had symptoms of dizziness or anything, than I should let her know, and threw out there that I could have sinus tachycardia. Oh great. Isn't that something that old people get!? And then my heart rate was also 121 BEFORE we started the Remicade. Ok so no reason to worry that my heart is racing from the Remicade, RIGHT?

Okay back to the infusion: the doctor came in and the nurse put oxygen on me, even though my sats were fine. I will admit it did help me feel more comfortable. But again, my oxygen saturations were normal. I was not in any danger. The doctor and the nurse stared at me. I stared back. I told them I was really fine. When the doctor said we might have to switch to Humira my heart sank. The Remicade was working SO well. The thing with these biologic drugs, is eventually, a lot of the time, they stop working. What if I start Humira and it stops working after a year? Then what? There are only so many drugs to try. I don't want the Remicade to be stopped when I barely started it. I truly believe that the doctor and nurse over reacted, and that my symptoms did not have to do with the Remicade. Even if they did, I don't think it was bad enough to stop it, (and they even cancelled my next appointment!) The nurse gave me a hug goodbye like she was never going to see me again. Are you kidding me? Just like that? Believe me, if I felt like all of a sudden I couldn't breathe, I was going to throw up, my heart was racing (and usually didn't do that), and I started coughing-then I would understand that it would be dangerous to try again. But I have talked to people that get hives at the beginning of an infusion, and still get it again, as long as they can be controlled with Benedryl. I could keep ranting but I will stop now.
I have an appointment with my GI doctor tomorrow to "talk" about it, and since I missed my last appointment because I was in the hospital. Chris is going to come with me and together we are going to explain what really happened and hope he lets me continue the Remicade. If I didn't get to continue it, I would feel like it was being taken away from me unfairly. The one thing has made me feel this good for this long in 7 years. Imagine getting a great job that you are really good at. This is the best job you have ever had. You have been waiting for this opportunity for several years. You finally know that this is where you belong. And then it gets taken from you, just like that, no discussion. You get a offered a different job in its place, but oh by the way, we don't know how long this new job will stay with you either. And you might not like it as well. And you might not be as good at it. That is kind of how I feel.
I will say that I talked to my ever wise mother tonight, (who I miss a lot, btw!) who reminded me that Heavenly Father has a plan for me, and if the doctor decides to switch me to Humira, then there is probably a reason. Maybe I would have had a bad reaction at the next infusion. Maybe it would have stopped working anyway. Whatever the reason, I will try to be ok with it if I do have to switch. I have been praying that everything will work out ok, and I trust that whatever happens will be the best for me, and it is the Lord's plan, and He will always be there for me.

On a completely other note, I just want to say that I was released from Cub Scouts this last week. I am now the piano player for Relief Society. I am very excited about this. I actually didn't mind scouts, but it was hard for me to feel like going to den meetings, after working all day. Even on days I feel good, I don't always have the energy I would like. And lately with being sick and in the hospital, I have missed a lot of meetings and I wasn't feeling too dependable at the moment. The Bishop told me that they felt this new calling would be easier for me, and I agree. :) I think it will be less stressful.

I will update after my appointment tomorrow, which brings me to the title of this post...Wish me luck!