Another Day, Another...

When will the dialogue ever change?  It WILL change, the question is WHEN?  I'm fighting against the 24/7 prednisone hunger, the relentless bloat, water retention, swelling.. and dammit... no matter what I eat or don't eat, nothing actually changes.  This drug has taken the wheel and is recklessly steering things headlong into the abyss.

I'm going to make this as short as possible, but I vowed to make entries here so I can see where I was and when and what was going on at the time.  Weight loss isn't going to happen in the midst of weight gain.  Some people are very fortunate to not be on prednisone long enough, or have a dosage high enough, to cause too much damage.  But for those of us who have to endure this, the hell of having to choose between what happens WITHOUT treatment for AIH and WITH isn't really a choice at all, unless you have a death wish.  UNtreated AIH has an average 5 yr survival rate in many cases, and less than 8 when it comes to terms of cirrhosis developing if it's absent at the time of diagnosis.  Those are ugly odds.  So we take our medipoison and hunker down for a long and rough ride to remission.

Diet--meal planning--cooking--eating--and my body's reaction to any of those differ from one day to the next.  And by the end of the day my body is NOT my friend.  It's another day in prednisone hell and I'm not handling this well for the most part.

I can't define the excruciating back pain that came on board almost two weeks ago.  I've felt it before, and it went away quickly when I received 2 IV iron infusions for anemia.  So is the anemia back?  Why won't any of my doctors test for ferritin again to check this?  SOMETHING is causing severe back pain that even prednisone can't touch!  That's kind of a big deal since prednisone is often prescribed FOR back pain!  What gives?  I may end up having to call the hematologist to see if I can get re-tested based on symptoms.  It's a simple test done right in his office, and though the results take about 3 days to come back.. at least I'll know if low ferritin and/or iron in my blood is to blame.  Because honestly, this sucks worse than the AIH symptoms.

In the meantime, I choose what I eat based on how long or IF I'm able to stand there and cook, make a sandwich, etc.  Yeah, it's THAT severe.

It's just another day in my life on planet earth...

PART 1: IV infusion... here's to more energy and lack of major symptoms?

So I got the call yesterday that my labs confirmed the iron deficiency and that I will be scheduled for an IV infusion.  It will take about 30 minutes for the infusion (not bad), and another 30 mins for observation for any reactions...which can be quite severe/dangerous (anaphylactic shock).  Then I have to go for a second treatment one week later, then it's observation from there to watch for any declines in ferritin, and also to see if the levels are increasing to where they should be.

I'm really hoping this will take care of the awful fatigue and other symptoms, which may not be all due to the ID/IDA with all the other issues going on.  It will be nice to have my body temp in a more normal range where I don't feel as if I'm freezing all of the time.  My temp at the doctor's office yesterday was 96.0*F.. it's been running very low like that for some time, I'm assuming, from the ID/IDA.

Let's just say... these are all steps in the direction of obtaining better health.

Infusion Confusion and Various Other Junk and Stuff

One step at a time.  How many times have I said that statement?  Well, I'm still in the process of figuring things out.  Or, at least the doctors are figuring things out.  Either way, though progress looks slow, it's still progress.  I'll take it.

Saw the hematologist this morning.  He ordered new labs to re-check my ferritin level so we can proceed with addressing the low iron/ferritin.  The levels have to be re-checked to confirm that the problem is still there, and if it is (which he suspects) he wants to address it with IV therapy (iron infusion).  It will take 2 treatments, one week apart.  Then once the treatments are done my ferritin/iron levels will be monitored over time to make sure it doesn't begin to drop again.  They won't have my lab results back until later this afternoon, and if it shows low ferritin again.. they'll make an appointment for the IV infusion.  Could be worse!  Some folks have to have an actual blood transfusion if it gets too bad!  Mine isn't that bad, thank goodness.

Pulmonary issues still to go.  Have to do the breathing test, which I'm assuming is because of the "Mild, scattered scarring" in my lungs.  Which I don't understand at all and try not to think about too much.  It's all still up in the air at the moment as to where my pulmonologist will take things.  We will see.  Just hoping the chronic cough I have is just the low iron.

Still in the wait-and-see phase.

Now... about those damn dreams again!.......