I was a bit grouchy at my appt on Friday

It could have been the pain in hand from the cannula, the pressure of taking on the intragramm and five bags of red cells, The fact that was a chair wait to begin with and that we didn't get out till 7:45 pm after getting up at 5:30 am, the fact that I was tired to begin with...... Anyway I'll try to do better next time.

Yep I was down to 100 from the previous Friday's blood test so on the Skype call with Doc Shoozenbootzen so he pre-ordered a cross check of 2 units of red cells so we would not have to wait on Friday. When we did the blood test Friday AM it showed I had dropped to 84. Remember that 'normal' is 140 down to 120. Anyway he ordered a third bag of packed red cells. At least we had hours of intragamm and the first two units to keep us busy while they cross matched the extra bag.

We had been really happy because I had not dropped as much this month and then to find that I dropped 16 points in a week was pretty pissy. It doesn't matter that 84 is about right for me over the last few months. I get filled up and then slowly leak out the red cells of the following 4 weeks. It was just that we had started to hope and then crash. But hey that's Myleodisplastic Syndrome for ya!

So late in the evening Doc came to talk to us and shared that he believes that the interferon is not working. There is no signs of Graft Versus Host Disease (GVHD) and its been 10 weeks. We have a Bone Marrow Aspiration (jab in the hip bone to examine the marrow directly)(BMA) scheduled for next appt Nov 2nd. But he expects it to show no reduction in my fibrosis ( cell scaring that clogs up my marrow). So at that time he will take the tests results to the hospital Transplant Team for a decision. He presented what might be some of the options they will discuss. In no particular priority order.....

*Get my donor, my brother to come over and suck out some of his Lymphocites and then juice him up with Growth factor, wait a few days and then spin (apheresis) out his marrow cells. Give me the Lymphocites immediately and freeze the stem cells. See how I do on the Donor Lymphocite Infusion (DLI) and then if I need to, later do a full Peripheral Blood Stem Cell Transplant (PBSCT)(also called, but technically not the same, Bone Marrow Transplant (BMT).

*Go straight to the PBSCT

*Get a different donor. That sucked some of the air out of rooms around the world. Yep apparently some of this current issue is that I'm too good a match with my brother and that's keeping the GVHD from popping up and we want a little GVHD. So to this end Doc will canvas the Transplant Queen to do a paper search for donors in the registry to see what they can find out ....am I common or rare. At this point Bluey cracked up.

--------remember: the spleen regular or large ....... JUMBO.
                             the Gall bladder, regular problem or stone stuck in the bile duct......rare giant stone!                    
                            my skin issues, just regular ichthyosis vulgaris or .........rare X linked ichthyosis! -------

Its pretty for sure that my tissue matching will be rare based on the previous history but...

I was starting to get comfortable with the idea of another Transplant and I even started thinking that it would be a snap as I was already half way there with my brothers cells so it would be even easier to tolerate the next time. This, Doctor Bluey informs me, is not necessarily the case but a boy can fantasise can't he. Anyway, maybe now thats out the window as they may want to increase the risks by doing a non allogenic (not my brother) Transplant. More risk = more chance of GVHD = more chance of all the bad things I saw others going through around me at the transplant ward. This is not a good development.

Of course its going to work out brilliantly for ME because I always get the luck. The big spleen, gall stone and skin issues have got to pay off someday... Why not on Transplant day?! Yahoo... bring it on.

Oh and timing? Could be before Christmas. Welcome to my world.
more later
Chris