Saturday, May 3, 2014

Post #66 - Update


 
 
In November of 2013 Bill hit his three years post transplant milestone.  The doctor is very happy with Bill's progress.  We were seeing the transplant doctor every three months, but after the last visit Bill was changed to every six months.  More progress.  The one count that has not come back is his CD4.  The normal range is between 0.410 – 1.590.  Below is the progression of Bill’s CD4:
02/10/11    0.056
07/13/11    0.216
10/27/11    0.132
03/07/12    0.237
02/20/13    0.247
08/28/13    0.320  - He is almost in the normal range
Since the last update Bill has caught a few colds that turned in a fever. We have learned that as soon as he gets a fever we need to get him to the doctor.  It took a while but the antibiotics eventually got rid of the fever and cold.
In my opinion Bill looks really good considering the journey he has taken.
Our good friend Mike's nephew in-law (if there is such a word) had CLL and had a transplant last year at Moffitt.  He did very well and had no complications.  The most interesting change that we noticed to the transplant process is that they discharged him on day three post transplant and treated him for 100 days as an outpatient.  It is amazing how medicine advances as time goes on.
In February we visited with Shirley, who was vacationing in Florida.  This is the first time we have met in person and it was great.  Shirley was the caregiver for her husband Max, who lost his battle to T-PLL on January 24, 2013.  This community is small and we have learned that having a network of those that can relate to T-PLL is priceless.
A shout out to Bill's father Sam who turned 90 and Mike's aunt Eleanor who turned 98 in February.
On January 27th we rescued another dog.  Her name is Missy and she is a Chihuahua mix.  She white, weighs 5.5 lbs and is a great dog.  She is adorable and gets along with Sookie.
As we have said in the last few posts, we will continue to make updates so you will know how Bill is doing post transplant.  If you have questions please post a comment and we will get back to you.  All comments are screened prior to approving for public view.  If you don't want your post public we can deny public viewing, just provide a way for us to contact you.
Thank you for continuing to follow Bill’s journey


1 comment:

Anonymous said...

Hi Bill,

My Dad had only about 7 infusions of campath in mostly small doses which was enough to bring his wbc around 100 right down to under 4. There is now talk about stem cell transplant but given his amazing response to the so few treatments I am questioning if and when stem cell treatment may be ncessary at all for him.

I was just wondering what was the gap between you finishing campath and when you commenced the stem cell transplant. I know there's no text book answer for it, but I was just curious. Also, by what basis or reading did they decided it was the right time to do it?

Thank you. And thankyou for sharing your story. It's wonderful and inspiring to read how well you are doing.

Kind regards and sincerest wishes to you also for a speedy return to perfect health.

Joy.