Wednesday, June 29, 2011


This is not at the Infusion Center, but wouldn't that be beautiful scenery if it was.

Today's post is being brought to straight from the Infusion Center, sponsored by Al's doctor week extravaganza.

Do you feel like you are on a cheesy game show?

I really am at the Infusion Center getting my first of three iron infusions. More on why I'm getting them a bit further down. But I will say thank goodness for free wifi and a big comfy chair.

As I mentioned in my Planking post, last week I did my tour of doctors -- GI and Rheumatologist. Both were follow up appointments.

First up was Dr. GI. We had a lot to discuss since I hadn't seen her since my little visit to the ER last month. My heart rate, fever and blood pressure were all elevated when they took my vitals, which they noted and told me to keep an eye on.

We reviewed all the labs and tests I had while in the ER. My blood work showed my hemoglobin was down, she thinks due to low iron, blood loss. My CT scan, although it didn't show an obstruction (probably because it passed before the scan) did show some inflammation right above my pouch. It also showed a nodule on my liver, which all my other scans have shown too and it appears it's nothing, but she's the first dr that wants to look into it further so I'll be having an MRI of that soon.

But back to the GI symptoms, well as usual we just don't know. Is that all my scar tissue really inflamed and squeezed by bowel, is it actually more Crohn's like activity, there is no rhyme or reason.

The plan is to see how things go, if I get back to feeling very bloated, gassy pains, etc. I'm to call right away and get scheduled for a breath test. She is also going to talk to one of the top surgeons about doing a follow through series through my stoma to ensure I don't have a stricture somewhere. She asked me to talk to my Rheumatologist about a possible course of steroids -- NOOOOOOOOO. She said she knows that last resort, but it might help. Her goal with me is to not just throw a bunch of meds at me, because I'm not like everyone else. I liked that approach.

The next day I was off to the Rheumy. And again, my vitals were out of whack and they were concerned so they ordered blood work, which I did after my appt. We discussed my main source of pain these days, my left hip down to my left ankle (all other joints are stiff/painful but status quo of where they've been, which is good.) He said he wants to go ahead with the MRI of my left hip and leg to check for avascular necrosis and that we wouldn't do any Prednisone discussions until after we get those results. He said to keep using my crutch when I need to for longer walks, etc.

Rheumy called me this past Monday night with the results of the lab work he ordered and my hemoglobin and red blood cell counts were down still to 9.1 from 11 in mid-May. I have a message into my GI to see what she thinks the reasoning for this sudden steady decrease may be. I don't think that I have more blood than normal. So what is causing the anemia?

What I do know is that anemia can cause severe fatigue, rapid heart rate and low fever, but there are a number of causes for anemia itself. One of which is chronic auto immune issues. Just another chapter to fill out I guess.

To recap:
  • Waiting for a referral for MRI of liver
  • Waiting for a referral for MRI of left leg
  • Waiting for discussion on follow through series through stoma
  • Have two more iron infusions after today
  • Keep an eye on things from there
And there you have it folks, another update from the Chronicles of Crap. Never a dull moment and never a clear path, but we keep on trucking.

1 comment:

Harris Family said...

Keep you spirits up friend! You are a true inspiration. Pray that all the referrals come through quickly and that your vitals settle down soon! xoxo