Day + 5

In the past few months I have discovered different forums and groups populated by people who have had HSCT for autoimmune diseases, some specific to MS and some even more specific to HSCT for MS by Dr. Burt in Northwestern University.  Most of these people have their own independent blogs in addition to postings of studies, papers other publications in the public forums like thisisms.com and closed Facebook groups for HSCT patients (don't you wish you could join that group??).  Most of the independent blog type data content was incredibly helpful through the research, application and preparatory phases of HSCT.  The level of specificity with which each "blogger" described their symptoms was helpful yet alarming. 

At this moment there are two women going through HSCT these same weeks as myself. We were introduced by George Goss whom in an earlier post I introduced as the single greatest source of HSCT for MS information in the world.  He is a good family man and a physicist from CA with the "go to" blog source for all data, studies, facilities etc.  His URL is in an earlier post.  He received HSCT for his Secondary Progressive Multiple Sclerosis (SPMS) 2+ years ago in Heidelberg Germany.  He reports that his disease has stopped progressing 100% AND he has experienced a 50% reversal of physical deficit based on his pretransplant EDSS.  George works tirelessly for the personal satisfaction of educating others about HSCT for MS and to share how well it has worked for him.  I look forward to meet George one day. 

While helping us all individually, George thought it would be helpful for us to be able to share the experience of planning the HSCT journey together.  Melissa, Elin and I have communicated by email through our procedures just to provide positive energy from different facilities and different continents.  Elin is in Sweden undergoing a myeloablative BEAM protocol and Melissa is in Israel for a nonmyeloablative treatment similar to mine.  I'm happy to report both Elin and Melissa are doing great.  All of our "stem cell birthdays" were this past week.   Both of their blogs have maintained a refreshing positivity despite the inevitable difficulties of HSCT, and unlike most other HSCT blogs that focus usually on what went wrong during their day or week.  In the spirit of my two other MS-Keteers, I will attempt to describe my day by highlighting a few positives to inform you of the daily events.  Here goes: 

1  I was not arrested or detained for any measurable period by local, state or federal authorities.
2  I was not hit by a bus or any other motorized/mechanized vehicle within the last 24 hours
2  None of my teeth were either forcibly removed nor did they fall out on their own
3  There were no (reported) fires in either this hospital ward or the hospital property in general
4  I did not bring a child with me into an electronic tanning machine prompting national media       attention (if you're reading this outside of NY you probably won't get that joke)

As you can see clearly, this has been a very good day!  A few other things did happen that I would categorize as worthy of mention.  For example, a short while after completing my blog post last night the nurse determined my PICC line was clogged fuller than a Paula Dean coronary artery.  This took about 90 minutes of on and off access to my PICC line to clear it.  She used medication to inject and try to start the flow again.  It was slightly alarming as this is the 44cm line from the inside of my right bicept and fed through to the exterior of the superior vena cava of my heart.  If we can't get blood pumping from there, we gots a problem.  No matter what "challenge" you encounter here at Northwestern EVERY single person is trained to maintain the same positive theme.  A few examples of these are:  "Every person is different and experiences HSCT in a different way", or " It's not uncommon to see this as a response from the chemo", or my favorite, "It's not something the doctor hasn't seen before". 

Before my brother left last night I did feel weaker but I attributed it to the enormous amounts of energy wasted trying to will my NY Rangers past the NJ Devils in the playoff game last night.  It went for nought as we were eliminated in overtime from the quest for Lord Stanley's cup.  In truth, for the first time ever I wasn't terribly heartbroken as I do get a little too "wrapped up" into it and this is not a good use of limited energy.  During a morning Skype with the family in NY, I could still see how angry our son Matthew was with the loss.  He's the most competitive kid I know and it was funny to listen and see him talk specifically about if they had only done this or that better they would have won.  I remember those days...

Most of last night was filled with nurses and techs so sleep wasn't long or restful.  By 7:00 this morning I was up with fever, headache and overall weakness.  The fever lasted throughout the day ranging from 99 to 102 but I was assured, "this is nothing the doctor hasn't seen before".  I was given IV steroids to try to control the fever and pain and while they worked for a short while the effect didn't last and I was back up to 102 for most of the afternoon and evening.  I received a transfusion of platelets due to a measurement of 14 when it should be above 20 for my position as Neutropenic meaning <0.1

Fever in general is not good for MS patients because it usually exacerbates symptoms due to the fact that fever is the body's response through a sort of  hyper immunity mode to fight incoming invaders.  Unfortunately, my former immune system was attacking my healthy live tissue so when an attack is launched, the shock and awe of the campaign is usually felt by worsening symptoms.  Fever during Nutropenia is particularly serious because there's really nothing to attack.  My blood was drawn 4 times today to check for  bacterial and viral infections but there were none.  My body is just reacting to the fact I have a significantly suppressed immune system and it doesn't have any clue why.  It's like firemen being called to a house but can't find the fire so they just start destroying the house looking for something to do. (that one's for you JJ).

These fevers in my case cause a state of paralysis.  I can stand with support just long enough to pee, my hands and feet are completely numb and walking a few steps is possible only with help and I'm confined to the room.  The headache from this has been unrelenting all day.  Bea is here by my side. She's watching movie after movie on the new Kindle Fire my brother bought me.  Somehow, I'm a member of an Amazon Prime exclusive membership through the Kindle so we (I should say she) has access to an amazing library of movies, shows, music etc.  One of the many things I love about Bea is that she has a unique and innately positive perspective on the world. I call it "the world according to Bea".  She thinks we're sort of lucky to be in this Prime membership to have access to the free  video content.  I'm sure we're lucky enough to pay $40-$50 per month to get these free movies but it's just not to be dealt with today. 

About 30 minutes ago my fever broke and I probably lost 1-2lbs in water weight in 5 minutes of sweating.  I'm unhooked from the IV pole until about 2:00 AM at which time they will throw another IV medication on the line and after that I should be good until morning. 

At one point early in the evening Bea asked me if I was bored, knowing that I never sit anywhere for more than a short while at home, but honestly today I was too sick to be bored.

Tomorrow is a brand new day!!!