Friday, October 24, 2008

Cleared for Launch!!!!

Hi everyone,
I got the clearance for the stem cell transplant all the tests are in and here we go! Well today I get admitted for overnight chemotherapy called mobilization which encourages stem cells from my bone marrow to enter my bloodstream for collection, at present I am awaiting for a bed to become available.
Well I finally have the picc line I was looking forward to getting as this would prevent the numerous peripheral IV pokes and make the IV chemo easier to tolerate, after two attempts it was somewhat concerning to find my intra vascular circulation is just as problematic as I have a stenosis to my Rt subclavian vein thus they could not thread a picc line through that side and had to place it in my left arm, Four hours later thankfully it was placed successfully. I am now finding out through these tests that scleroderma has been affecting my vascular system more than we realised. Most of my heart tests have checked out fine but upon meeting with the cardiologist, it became apparent that I had some ischemia in one test which is often seen with scleroderma but I have been assured by the cardiologist and Craig that there is nothing to worry about!!! It would be my luck after finally going in for stem cell treatment and end up getting a bypass instead. It has taken a few days to come to terms with this but I say to myself that this is the reason I am having this treatment, to restore my immune system and alter the course of the disease, We will get through this by staying positive, strong and not letting these findings worry us.
Craig and I ventured out from the "miracle mile" area as we were having Walmart withdrawal symptoms. Everything is so expensive here designer this and that, so we took a bus to the nearest Walmart. Which after an hours bus ride we found it to be in a decidedly dodgy area of Chicago, we felt like staying on the bus and heading back to the safer part of town. However we hid our jewelry tried to look less conspicuous which with Craig is very difficult to achieve but we persevered and survived and got our "Walmart Fix".
One thing about Chicago you can definitely get around it with a great public transport system. With all the walking we've been doing its great for my cardiovascular system so Craig's keeps telling me.
As we await for the phone call on my restored state of the art mobile with new sim card to say my rooms ready for my overnight stay. I think of the positive at least Craig gets a night off from my snoring!!
Anyway Love to all our Boys, Family, friends in the US & UK, All at DV Endo & all at Good Samaritan Kidney Center. Thanks for all your concerns and well wishes and helping out back home with mom and the lads.
Cheers Sharon and Craig. x x

4 comments:

Anonymous said...

great to hear the update it makes it better to understand what and how you are coping.keep up the positive thoughts and thinking of you always. phoned mum just going to walmart too with cindy. love and miss you xxxxxxx
debsxxx

Anonymous said...

Hi shaz I'm pretty sure that Ive not fully appreciated how serious your condition is until now. I think this blog gives a great understanding of the disease and of the treatment you are now undergoing after reading other blogs posted i now understand why you want this treatment is the only chance of a cure rather than a control. On a lighter note as craig managed to sort the laptop to the telly . Got another site for the footy so he can get his fix . I will get craigs mobile and give you a ring over the weekend
our love and thoughts are with you
big bro and family

Anonymous said...

hi shaz its good news hope its all go ing ok 4 u how is the weather is it like phoenix mom pone 2 nite the lades are ok love wend /bri/josh/kel and finally the petsssssssss lol xxxxxxxxxxxxxx

dvendo said...

We miss you and think about you often. Everyone asks about you.
I hope are not freezing. When will you be home. I need to go see mom.
Take
Care
Devin/the Endo crew

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.