Roid Rage and Feeling Pretty Damn Good

Since we last visited a week or so ago, health systems on board the Shoop Endeavor have gradually gotten a lot better.  Saying this from the patient perspective seems to mean just as much as it does from the doctor(s) at times.  They mean it sincerely.  During the daily rounds, which are broken into 2 parts, much of the discussion revolves around what the patient is feeling.  This part of the meeting is taking place with the patient (me) and assessing the physical aspects of the past 24 hours.  The obvious  (stool volume, eating anything, cramps, pain, walking, swelling, etc.) are covered and discussed with the Physicians Assistant or Nurse Practitioner.  We recognize that more and more of the assessment job falls under their jurisdiction and the Doctors make the final recommendations as far as ongoing treatment and medication adjustments.

I think we have a much better understanding (or comfort level) about how the process is working and are learning to ask the right questions to the right people to gain the knowledge we need to feel more comfortable.  It doesn't eliminate dealing with some of the misfit personalities that come through on different rotations all the time, but it might allow me to have some more subtle fun with them all learning how the process works:

Every 2 weeks, the attending physicians make their two weeks of rounds with the patients (weekends too!) as part of the daily routine.  Included it the rounding team are the Doctors, the PA (or nurse Practitioner), as well as an interns as needed, This weeks chapter of attending physician is Dr. Ayers, fitting the timidly motherly profile.  It took a couple days for her to come out of her shell at the prodding of the nurse and start giving some info. Or, it could be the fact that the patient, his wife, his mother and father are all in the room watching the every move and ready to ask questions at the drop of a dime.  Hell, I get intimidated by that many Shoops in one area..  But seriously, once we had a better idea of how the process needs to work and adapt to the doctor (god forbid, adjusting to the patient) we are more comfortable.

Wondering about the Roid Rage?  Well, after I started feeling much a week or so ago (call in the last week of Jan), it could be directly correlated as to when they hit me with the high doses of steroids to shock the system.  The trial an error with some of the other drugs be damned, once the GVHD started toward the liver, the roids were the solution and have been in the past as well.  Needless to say, they have done their job, but not without the lovely side effects that include:

1. Irritable behavior (Lynn and Mom took the brunt of that)
2. Water retention (almost immediately starts)
3. Major swelling (which must be controlled with other drugs)
4. Hypertension (lack of sleep possible)
5. Muscle decay (they make sure you are walking and remaining active).  The roids go after weak spots in muscles (as well as the GVHD).

And last, once you are on them, coming back off is a b*tch as they have to wean you down over a significant period of time.  The rule of thumb for starting is to give the patient an equal amount of mg to the patients weight in kg, twice daily.  That meant that I received 88 kg 2x daily  for the first week and then they can taper off to 60 2x daily once they feel all is working well.  I just moved to 40 mg 2x daily today, so we still have a long way to go...

But the good news is that comparatively speaking, I do feel very good since any point when I checked back in the hospital on Jan 7.  Getting up and walking has been relatively easy to accomplish my laps until the past day or so, and they have released me to the newest diet fad, called the B.R.A.T. (It beats the clear liquid only I was on for 5 weeks). As the GVHD is treated and actually reduced, a new world starts to open up.  At one point, I was considered Stage 4 GVHD and we are now showing a slight Stage 1 (which has to do with the amount of stool volume measured every 24 hours).  Unfortunately, that is the volume that needs to be addressed before moving forward with more advanced food.  Ahhhh the B.R.A.T. diet, it adds to the clear liquid the following:  bananas, rice, applesauce, and decaf tea.  Wooooohoooooooo!  But its progress.

"So Shoop, what is the story, when are you going home?"  We know it won't be this week, but are hopeful in the next couple.  The underlying problem is that reeling the body back in from such a serious episode of the GVHD is such a struggle.  The Doctors (and now the patients / families) have a better understanding of the serious nature that we will take the extra time to get it right, as we should.

I do have tenure on the floor having checked in on December 8 and only missing 3 days.  Unfortunately, one of the really cool people I met in December is back again as well.  I think we remind one another of ourselves.  We both wanted out of here the 1st time so bad that we pushed the envelope to make it happen.  We now come to see that we both have all the same sh^t going on and it all needs to be corrected.  So god bless Gladys and I as we fight through the massive diarrhea, nausea, general pain and the newest (for me) the massive skin rash.

In the past 4-6 days the biggest frustration has been watching my whole lower body puff up like and oompa loompa.  Its all a result of roids and the lack of being able to get rid of the water weight, and moving around is a big challenge.  They say to expect to lose the skin...  I'll wait and not anticipate on that one.  (update 2-9-11, skin is recovering nicely, still have swelling, but all in all, pretty good)

But, I wanted to get the info out there on this blog about what has been happening.  All in all, this is the first one which has a lot of positive momentum, and that's how we are looking at it.  If I get to move up a diet, you all will be the 1st to know.  Keep the support coming, love to see the links to those favorites...  I have to say the list about the food network hosts got a lot of people howling around here.