Saturday, November 29, 2008

4 Days and Counting


Hi guys,
Thanks for your kind thoughts another day towards a brighter future. I am already seeing some changes 4 days post transplant. Most noticeably the skin on my hands has started to soften , I can see wrinkles where it was taut before and my fingers are now able to extend further. I think a similar thing is happening to my face as I have a different sensation to my cheeks. The Occupational Terrorist/ therapist is working hard on my range of motion and the looser skin is wonderful to see. My leg swelling has vanished and seeing normal ankles for the first time in a long while. My breathing feels ok. My white cell count is 0.4 with no fevers I start neupagen shots again tomorrow to get the new immune system working quicker.

Last Night was a bit eventful . It was late and Craig had left for the night when I experienced a strange sensation my heart was racing with chest tightness and I felt really weird my ears and jaw were doing strange things. I called the nurse and Craig at home and told them in a panic something was happening. Craig left his cooking and rushed back to the hospital. Craig started doing the vitals on the auto matic bp machine and assessing what was going on and the nurse paged the doctor. I thought I was doomed and the nurse brought me some ativan after speaking with the Doctor. Craig thought it was some kind of drug reaction and worked out it was the side effects from the anti emetic marinol after he googled it. It is used post chemotherapy and is made up from a derivative of marijuana. Apparently this is what its like to be stoned they stopped it this morning and I still feel a little off today.
Thanks for all your well wishes Sharon and Craig

2 comments:

Anonymous said...

Hey man glad too see your on the upward path to full fitness. Did you get the munchies as well as the panic attack .Spoke to mum shes fine , about to go into the desert with the kids to look at sculptures . Sarahs still working Connors started playin Squash coached by a profesional he loves his sport .TThats all for now from your bruv. Your always in our thoughts

Anonymous said...

Sharon, Glad to hear you are over the Buzz now. Sandy is feeling better and her skin in her hands also seem to be better. Glad to hear you are doing well, in our thoughts Sandy and Dale

About Me

I work as an RN in Endoscopy at John C. Lincoln Hospital and in 2006 I was diagnosed with Systemic Scleroderma, a condition that has no known treatment and was always symptom management. After doing some research, I discovered Dr. Burt, a doctor in Chicago who is pioneering the use of stem cell transplant to treat Scleroderma. This process uses my own stem cells - taken from me, cleaned, and then re-introduced back into my body, so that it will no longer recognize the Scleroderma. This is a very basic summary of a complex procedure. Systemic Scleroderma has a very poor prognosis and with my symptoms worsening I feel that this is my only chance at getting treatment and reversing my symptoms. I have worked for 6 years at JCL, Deer Valley and hope to continue there with excellence. I wish to continue be a good mother to my 2 boys, a good wife to my wonderful husband, and maybe one day be a good grandmother.