Coming Home

Well, Thursday's doctor appointment did not go exactly how I thought it would!  All the news was good but in a surreal sort of weird way.  After reviewing the 1st two days of testing, and especially the Cardiac MRI, my doctor here at Northwestern and at home at the Mayo Clinic have both decided that we should wait another six months before we proceed with the Stem Cell Transplant.  This might seem like bad news, but in actuality it is good.  The Stem Cell Replacement has been proven to arrest the Scleroderma and improve lung functionality in most cases 25-50%.  In 20% of patients with this disease, a body can do this on its own.  They feel like I may be falling into this group because since June my skin seems to have softened a little and all of my tests on lungs and heart have held steady.  I came to Northwestern with my mind completely set on this transplant and had no impression that this could happen.  With all the dates and schedules set, I thought it was a done deal.  I was prepared, my family and friends were all praying.  Well keep praying because God is the Great Physician and I believe he is with me and wants to show everyone that faith, hope and love are the best medicine for the soul and body!

It has taken me a few days to put some new wind under my sails and I am sorry I haven't been blogging.  I was thankful Dan was here to listen and help me keep positive.  They canceled my Cardiac Cath on Friday so Dan and I spent the day basically riding the subways and buses around town.  It was very hard to keep my mind from the what if's and why's, but poor Dan just kept reminding me that he loved me and all would be ok!  The doctor called me on Friday morning to talk to me again and just reiterate that at anytime in the next 6 months, if I would start to have symptoms indicating heart issues, that I would be moved up and that he felt 100% confident in his decision.  That the benefit wasn't worth the risk for my case, at this time.  I still had lots of questions though and was really stressed out, so I paged him and he called me right back and talked to me for another 30 minutes.  That helped to relieve some of my anxiety, frustration and anger that I was experiencing.  I think it probably helped for Dan to have a better Friday evening and Saturday too!

So I have called most everyone who had arrangements to be here to let them know the change.  For most of you I am sorry you have to read this and not hear from me personally.  I hope to address and explain to all of my friends in person very soon.  Plus I will post some more about the last two days spent here in the windy city.  I was waiting for Dan to get home this evening to talk to our kids before I sent this.  Remember the cell phone doesn't work to good this high up in the air and I did not want the phone to cut out on such an important conversation.  I talked to them both tonight and they seem relieved. Look for another post soon.  I love you my friends and family with all of my heart!