Exit Interview

Hello my dear friends,

Hope that you all had a great Christmas!

Well I am on day 35 - post transplant, and Dr. Nash is moving in the direction of sending me home.  My numbers are improving and pending any unexpected issues Matt and I should be leaving Denver and driving back to California the 3rd or the 4th.  Woo hoo!

We had what they called the exit interview on Friday and was given instructions, test and the doctors I need to see when I get home.  Looks like I will be continuing to need my blood taken weekly for a few months.

Also, because this is a study they have a follow up schedule to track the effectiveness of the transplant on the scleroderma.  The first one is in 3 months, which would  be in  February for me, then in 6 months and I believe it continues for up to 2 years.  Not sure how that will all work out with my insurance as  I am only covered until March 14th under the transplant case.  I know most people think because it's a study that the study takes care of the cost, but that is not the case.

Matt and I are so looking forward to returning home.  While we've been away, our dear friends, Joe and Karen have been  looking over the house and keeping everything going.  We are so grateful to  them.  It's one thing when you go away for a weekend or week - but I am talking 3 months... true kindness!

Except for going to the clinic, I have stayed in the apartment to avoid any contact with flu.. etc.  My energy level is low but not that bad.  Dr Nash tells me I will have good days and maybe not so good, but overtime I should start to feel stronger.  Patience.

I am attaching a few pictures that Matt took while I was in the hospital for those who might like go see a bit of the process.

Wishing you all a Happy and Safe New Year, most importantly --  Wishing you all Good Health!

God Bless you!
xo

Second Stem Cell collection.

Monica - NP  and Nurse Nancy

Container that held my stem cells

Monica verifying they belong to me.  Had 7 bags.

November 26, 2012 injecting me with my stem cells

After infusion - 1

After infusion 2

On the mend

Maria - she came in everyday to clean the room
a sweet, sweet lady

Moving Forward

Well my Dear and wonderful friends ...
I truly apologize for not posting sooner ... however I've been thinking of you all everyday and I know all your love and support has brought me this far.  I also know that the Lord has heard all your prayers.  Thank you!

After three weeks which is pretty much a blur to me the Doc gave Matt and I the OK to go back to the apartment.   As much as I wanted out of the hospital, I will admit I was very apprehensive about leaving as I was being monitor 24/7 and now I am going to be away from that with an overwhelming amount of instructions, outpatient immunosuppressed  diet guidelines, loads of meds each day to take, and knowing the not so obvious signs of the body to pay attention to, that may indicate you could have an infection and call the doc.

This part of the treatment is leaving the hospital and being monitored as an out patient for a few weeks. I am scheduled 3 times a week to go to the clinic to have blood test and be examined.  If the testing continues to improve  and I don't develop any infection or issues they will send me home with instructions on the appointments I will need to make with doctors at home and continued blood test.

I've been out of the hospital for 7 days now diligently following all the care giving instructions, thanks to my dear husband.  Last visit to the clinic continues to show that I am on an up hill recovery from treatment.  It's looking good that we could be headed home in a few weeks.  Then with time, did I benefit from the stem cell transplant -  keeping the scleroderma from progressing so quickly for a long period of time.

If you knew how long it took me to put this note together you'd laugh.  Hope it makes sense!

All is good and God's got this.

xo

Got White Cells?

Hello friends,

Just a quick update . . .

The transplant of is complete and though she had a pretty severe reaction to it, everything is under control now and progressing as expected. The day Mom had her stem cells reintroduced to her system, her lungs and heart and kidneys and who knows what else (seems like everything) went crazy for a day or two.  It was rough but she made it through!

She is still what they call "neutropenic" now, which means they have depleted all of her immune system and she is very susceptible to infection.  They will be in the isolation ward for the next week or two until her cell counts begin to rebound. Right now, she still feels very bad, and is very sick, but that is expected and all her numbers and cell counts and signs are as they should be.  The worst of it is over and the doctors are all optimistic about a good outcome. Now we just wait while her body repairs itself.

Thank you so much for your prayers and support!

- Ann