The First Treatment

https://video.wixstatic.com/video/cf3d9c_4008b25eefd84d268b7d2df4139bf6b2/1080p/mp4/file.mp4

This year has been extraordinarily eventful with respect to my disease and ultimately forced me to confront the reality that I could no longer wait for the stem cell therapy I had pursued for so many years. In April, I suffered a bowel obstruction. In October, I broke my foot in three places, leading to an extended and difficult recovery that lasted more than fifteen weeks. On January 1, I experienced respiratory failure. Then, on January 5, the appointment I had waited years for was postponed because of that hospitalization. Once again, it felt as though the very disease that was trying to take my life was gaining the upper hand.  This is a dreadful medical picture:

Life interrupted, the story of chronic illness in a nutshell.

When I got home from the hospital after the respiratory failure I was “afraid” to be excited about the stem cells, if that makes sense.  I was in a difficult headspace about who was winning (me or Lupus) and how hard I really could continue to fight.  We all have a breaking point.  Lying in that hospital bed with a boot still on my foot unable to breath might have just been that breaking point. 

However, before I left the hospital, I asked the Doctor if she would allow me to go see my grandchildren in Los Angeles and she said Yes.  There was no danger of getting anyone else sick and I was on a significant dose of steroids which had me feeling pretty good. Sometimes you just know what you need to get motivated to keep fighting. 

I had not seen my babies in 6 months and it WAS just what I needed.  Logan’s speech development has been extraordinary since we last saw him and he has become warmer, funnier and much more connected to us.  Ripley is an aspiring member of Metallica, classic Tom Boy, learning to ride a skateboard with all the grit and gusto she has.  The Rock is another story.  That kid figured out what she was born into pretty quick and was blessed with the gift of words, the one that her daddy has where 2 year olds can speak like Philadelphia lawyers; but with the attitude of some little Boss Baby wearing makeup.  Quite the little character and she knows it.  Both Ripley and Logan are a little intimidated already.

I came home from Los Angeles excited and ready for this next chapter.  I started to get a little tired when I got home as I tapered my steroids back to my daily dose.  January 19 came and we were good to go.  My husband, Doug, took me and I took a few little sacred treasures.  I am a firm believer in the positive power and energy in the universe and surrounding oneself with positive energy is important.  

The infusion was simple.  I got some IV fluid and then 200M of my mature stem cells were injected into the bag and went into my IV.  Then I inhaled another 100M via atomizer.  Which was cool and interesting. This technique offers high distribution, rapid absorption, possible entry through the blood/brain barrier.  Though research is ongoing with many studies focusing on the safety and efficacy of exosomes for lung repair. 

I came home feeling pretty good.  A little bit tired as I had not slept well the night before.  I have not had any side effects that I can tell. 

For now, I remain on all my treatment including steroids, immunosuppressants, immunoglobin infusions, Saphenelo infusions, Stelara injections, therapeutic phlebotomy and I am sure I have forgotten something. The goal is as I do better we start tapering some of these other toxic treatments to see if I go into remission. It will be a slow process but any progress in that direction is a huge win.