Days of ('Roid) Rage

Simply cannot believe it was just Thursday that I last posted.  It has been a whirlwind of activity here.  Steve's ferritin (iron overload) level was not acceptable at such a high, dangerous level.  Normal is <400, his was teetering near 9000.  Iron can deposit in the liver and/or heart and cause organ failure...you get the picture.  He was feeling sicker....

The first dose of Desferal has to be given in a controlled hospital setting for both health and insurance reasons, understandable.  All outpatient facilities at Northwestern as well as Christ were booked for Thursday and Friday, so we went onto a waiting list for inpatient rooms at Prentice/NW.  I was, quite frankly, relieved, as he seemed medically fragile and not at a level I felt able to handle at home.  He doesn't seem well enough to have surgery of any type, so this was a great opportunity to get plumped up and game-ready.  The call came at 10 on Friday (2/18) morning.  He was vomiting at home before we left the house.  ::SIGH::

On a humorous note, this was his 11th admit.  We school that place!  He adjusts the thermostat, switches out the hospital pillow for the home pillow,  I set up his clothes/shoes/blanket.....the intake questions are answered with military execution, and then I had to recite his med names, dosage, and frequency by heart.  I have to close my eyes to do that.  Had an outstanding hospitalist, Dr. Burke, and she was snappin' and tappin' her way through *the process* of hospital admission.  Patience is truly a virtue.  We were told that Steve is one of only 2 patients at NW (think that's right) that have received Desferal SC (subcutaneous).  Basically, they insert a small-gauge needle into his stomach "fat" which does not currently exist, and very, very slowly infuse the med over about 12 hours.  Dr. Altman was on a flight to Munich for a leukemia conference, and calls were made to cross t's and dot i's.  I left at dinnertime.

No one knew how he would react to the infusion due to the Hereditary Spherocytosis and the elevated ferritin and bilirubin levels.  That ALL changed this morning.  Steve's ferritin was reduced by HALF in the first dosage.  UNBELIEVABLE!!!!!!  His hemoglobin is now at 9.4!!  Awesome.  Bili is still over 7.  Of course, he didn't sleep worth a hoot.  Needed a wheelchair to get downstairs for the ride home.  Thanks to Dave S, who was my wingman today, we make a great team! 

Steve is really suffering from the steroids today, and tonight was really tough.  He is on 40mg Prednisone x1 daily, 3mg Entocort x 2 daily, and 5ml Beclomethosone x4 daily.  The second two are often prescribed for Crohn's Disease patients, helps calm the GI.  None of our practitioners are sure why his GI is such a bad state so quickly.  Many possibilities, and we are on course to knock it out.  

If you have never dealt with a steroid patient, well......let's just say it is interesting.  You get screamed at, verbally abused, mocked, criticized, and then for fun, they sob and wail.  Sometimes they are totally silent and demand the same from their caregiver.  Sometimes they are manic and gabby.  Can't eat.  Eat like a horse.  Their thought processes go haywire.  The emotional rollercoaster is awful to watch.  He was afraid we were running out of comfort food today, so I ran to the store and tried to buy food I thought he would like.  So he asks, "what did you buy?" and then he didn't want to eat.  It's a living hell.  I try to give him his meds and he is sick to his stomach.   Yet the meds are to help the upset stomach.   If you get off task with the 'roid dosage, he crashes.

So tonight is dose #2 of Desferal.  There is a little battery-operated pump that will be our bedmate for a few nights.  The Desferal attaches to the iron and causes the body to excrete the iron overload through urine and poop. I can't help but feel that some of his GI disturbances are from both holding and dumping the iron.

We hope to see improvement in his health tomorrow.  I have to get him downtown once before his surgery on Friday  for his pre-op evaluation, which, quite frankly, is a pain in my Lithuanian ass.  Good news is that his INR level, which is the lab test they do to determine bleed-out risk during surgery, is "PERFECT."