Wow, a lot has happened since I last posted here. Bad blogger, bad! Ok....to get us all back on the same page:
I did see the hematologist and they set me up with an iron transfusion. This is what I wrote about it on a support board:
I got the inFed infusion where you get one large dose of iron. There is another type where you have to make multiple visits getting smaller doses each time. Friday morning I arrived at the infusion center at 8:00 am. They were very busy with folks there to get chemo, blood, etc so I had a bit of a wait before we could get started.
Finally, around 9:00, they started my IV and hung a small bag of saline to flush things and give my pre-meds. I got a small dose of Benadryl and one other thing I can't remember to help prevent reaction. Then I got my test dose of the iron solution. This is a mini bag which they run to see if you will have a reaction to the iron solution before giving the full dose. All I felt during this time was a slight fuzzy headed feeling from the Benadryl. Once 30 minutes had passed, they started the full dose of the iron solution. I was walking out the door by 3:00 pm.
The only issue I had was being cold (which always happens to me with IV) and getting hungry (I brought a small snack but really needed a lunch). My nurses got me a warmed blanket and some Boost and I was fine. I mostly spent the time watching Netflix on my iPad. By the next day I felt what I considered a marked increase in energy. That feeling lasted throughout the weekend and I did some good running. Today I am feeling sort of tired again, but it could be delayed effects from the infusion which they warned me about. Should go away in a day or so.
This was back on July 27'ish. Another entry for the Things They Don't Tell You file:
I felt crazy good the evening I got the infusion. It was almost freakish how energetic I felt. I got up the next morning and ran seven miles with my training friends. That Monday I ran four more. Then I hit a wall! I actually felt worse than before I went in for the treatment. I was really depressed thinking it hadn't worked and something was majorly wrong. About four weeks after the infusion I had my follow up appointment. I was feeling a bit better. My labs came back normal and I was really relieved! I told the nurse practitioner about my high and crash and she said, "Oh yeah, that was probably the steroid we give you to avoid a reaction. That happens pretty often." Would have been nice to know about this so I would have known what I experienced was normal. Oh well, now I get to tell all of you so that you will know if you are ever in this situation!
Fast forward to now....I am on a schedule of monthly labs. In fact, I get my first recheck next week. I have a three month follow up with hematology. If everything still looks good then we will stretch the lab draws and follow ups out until I can eventually quit going if things stay stable. Hopefully this anemia mess was just a result of the cumulative effects of the surgeries and my infusion experience will be a one and done type of thing.
So how am I doing now? I couldn't be better! I've had my active j-pouch for about eight months and have never had any significant issues. I experience the typical 6-8 movements per day and can sleep 6-7 hours uninterrupted. I am taking classes full time and have no trouble sitting in lecture for a couple of hours at a time (well, except for some boredom once in awhile!). I am very busy with my boys and their activities and I love being able to spend an hour or more on the soccer sideline without once worrying about having to duck into the port-a-potty. What might be the best part though.....I am doing some of my best running ever! This training season started out pretty rough fighting the anemia but, now that my counts are back where they should be, I'm training well and doing some of the best racing I've ever done.
So, yes, when people ask me if I am happy with my choice I tell them I absolutely am.