Saturday, August 28, 2010

The Rash

As an after thought, I wanted to explain the picture.  I got hives in 2008 and it turned into this rash.  It was all over my body but predominately on my legs.  None of the doctors I went to had seen this before.  This was the start of all of my symptoms.  They talked about doing a biopsy on my skin but never did, they should have.  My hematologist now asked me that question and said that was the first thing that should have been done.  He said he only say this once before and it is not typical with Multiple Myeloma but you never know.  He is testing me for something else now as well as he has seen this one other time in his 20 years.

First Step - Dr Talamo

After contrancting a very strange rash in 08, becoming septic, twisting an ankle and told I had lupus I started on various drugs, Cellcept, Predisone and a few others to control potasium levels.  Other symtoms arose like fatigue, pain in hips, back and shortness of breath.  Rumatologist did extesive blood work to find everything was crazy inside. White, reds , protien and calcium levels , I was anemic and needed blood and he told me to check in to the nearest hospital immediately -which was the next day.  This was August 09 and was told I had Multiple Myeloma - at least I knew.  Transferring to an oncologist we began a new series of treatment and discussed the Stem Cell transplant within the next 6 months.  But after the drugs: Revlimid, Dexamethasone, Prednisone and Zometa and some other various drugs to control calcium and potassium levels I got an infection. 105 fever in a matter of minutes and ended up with pneumonia and became septic and had renal failure and was put on a respirator and into a coma for 3 weeks.  Waking up was not good, could not move arms and legs and had no kidney function. I have come back from that in the beginning of this year .  I have been on Revlimid and Velcade for 9 months as well as Aredia vs Zometa (not sure why the change) and just started back on Des 6 weeks ago.  I have spinal stenosis in my neck as well. Lots of back pain, neck pain and arthritis everywhere.  I just met with the hematologist at Hershey and will being my testing for the stem cell transplant.  He feels ok that we can harvest my cells, I hope as I read about being on Rev too long so we shall see.  I hope to blog this my the end of September if all the testing goes well so others can know what its all about as I struggle to find information regarding this.