Saturday, 13 December 2014

Update 48 - HSCT cure for CIDP - Facts (6)


Around 3 time a day, a check of your blood pressure, pulse and temperature.  If your BP goes above 130 (higher) or 90 (lower) then they get concerned and if your temp rises, What happens to these affects the doses of medicines they pump into you.

Your weight is also checked at least once per day (most say pre-breakfast).

IV drugs administered after first set of checks, usually 2 bottles (but size/dose does vary). Plus a pack of pills, which are tailored to you for taking 2/3/4 times a day.

Repeat for quite a while, so relax and enjoy!

As you go through the process initially your results will fall, as the new cells take over they should rise.  Below is an example of the different measures, showing them falling after the first three days - this is normal:

If your platelet count drops to below 10 they will need to infuse you with more to avoid any risk of internal bleeding not clotting.

By around day 7 or so (+ or - a few days as everyone is different), that is when your blood cell count drops to the lowest point.  This is known as Neutropenic State (and your hair comes out!).  This is the day you will know the stem cells are working as the count will now start to rise.

Once you Leukocyte levels reach around 1 million, the strict isolation can (or should be) gradually relaxed - as everything is progressing as it should.  This should be around 2 to 3 weeks after the infusion, meaning that some normality can be resumed and it would be possible to come out of isolation and go home (around 1 week or 2 later).  The timescales are up to the hospital/consultants and your individual capabilities.

There are still 3 to 6 months plus of recovery, with multiple hiccups along the way, but this is a major point of advancement and very good.

Notes:  Whilst in isolation, make sure you have plenty to do, after all you are on your own!
             During all this you will feel, weak, dizzy, tired and in a certain amount of pain
             All the numbers etc. will vary between patients

The best advice I've seen through all this is: