Off To See The Wizard!!

Managed to tear myself out of bed in time to go up the hospital to see Merlin for my 18 month check up.  I think actually this is the first time I have not been an inpatient when this appointment comes up ha ha.  I had to go a bit early so that I could the lovely Ailsa about having a pic line put in.  I went with the intention of probably not having one put in but in speaking to her I changed my mind.  One of the main reasons that I would not have one is that they only used to last about a month so it wouldn’t be worth the risk but apparently the new ones now have some sort of clip which keeps it in place better and that it can last 6-8 months so it would be beneficial as I’m sure that I will be back in that time.  The other thing is that it will need to be flushed once a week which Judith will be able to do at home thankfully so I can remain having to go to the day unit every 2 weeks thankfully.  The meeting with Merlin was quite informative as well.  I mentioned to him that I was really suffering with the GVHD of the skin at the moment.  He tried to get hold of the dermatologist whilst I was there but he is on leave today unfortunately but assures me that he will speak to him tomorrow and stress the urgency of the situation and try and get them to start this PUVA treatment as soon as possible.  He was also talking about Plan G too ( well I’m up to that now after trying so many different things so far).  He went to a conference apparently last week in Germany where there was this particular company who manufacture machines that are quite similar to the Stem Cell harvesting machines.  They work in such a way that you are connected up and your t-cells are harvested and mixed with some form of chemical solution then given back to you. The fascinating thing is that the cells that they actually give back to you are to all intent and purpose dead cells but they somehow trigger the rogue cells that are causing the GVHD to sort of stop attacking you.  It is especially successful in case like mine that is predominately a skin problem and also is good at preventing GVHD too which is a bonus.  So if the PUVA doesn’t work out there is something else on the horizon.  The main stumbling block maybe that these machines are not cheap so they are in limited supply around the country.  I will need to be connected up twice a week to start which will involve probably travelling out of Wales to get treatment which is not practical although he did say that he will bring it up at the next haematologists meeting he will be going to next week to discuss the possibilities of the trust purchasing one so we will have to see.  In the meantime if anyone feels generous enough to donate one to the hospital I’m sure it will be gratefully received.  Maybe all those that are thinking of donating to the various political parties but worried about being named I’m sure that the department will be happy to take your money and not want your name ha ha!!  Well as far as the pic line is concerned unfortunately Ailsa was having major problems trying to get one in to another patient so I opted to go back to the day unit on Thursday for the Lovely Karen to put one in for me and she better be good as well as she owes me one after the last blinking episode.  

I want to thank a few of the Florence Nightingales today too first of all Sheri for not even trying to get blood from me as she didn’t want to ruin my only good vein that’s left and secondly to the Ever delightful Cath
For not hurting me (much) when she did take blood and sorry for keeping moving away promise ha ha ha!!

Okay enough rambling for one day.

See ya!!