Get me off this rollercoaster......

How quickly things can change!  I am still feeling well in myself, (have caught the Flu virus whilst being back in htospital but not feeling bad) but my bloods are rubbish!


Er...yes...I am back in hospital.  After being out of Leicester Hospital for a few weeks my bloods had not started improving at all.  I basically had no white cells at all, hence no immune system and my platelets, which were once holding their own at a level of around 80 had plummeted and I became transfusion dependent again every few days (you generally need platelets if they drop to about 10).  My haemaglobin (red blood) also dropped, and very quickly so needed blood transfusions every week.  It was all disappointing as my bloods had been doing so well, but it seemed that the toxic Gancyclovir drug they treated me with for the virus flair up had affected my cells in a much bigger way.  So...when I went for an outpatient appointment in Leics, Dr Murray turned round to me and said we need to investigate whether the graft (transplant) has now failed.  This is called secondary graft failure, when it did work but something happened to make it fail at a later stage.


I was quite shocked, I had finally allowed myself to think that it had worked and that I was getting better.  It was harder too as I felt so well, and still do (well I mean in comparison to how I had been feeling).  I wasn't sick or feeling poorly and I was slowly building my strength up again and trying to get back to some sort of normality.  My bloods were just not showing it!


Dr Hunter in Leicester spoke to Professor Marsh in London and she arranged for me to be readmitted.  Here I am writing from Kings College Hospital again.


I haven't had any treatment here, I don't need anything other than some platelets and blood every so often, it is all about monitoring me really.  Although I was told today I could go home if I lived nearer as i'd need to come in every couple of days for tests, but as I don't I am stuck here for a while longer.  But quite frankly I don't mind, I just want to get this all sorted.  It has also given me a chance to voice my concerns to key people about 'Kings' pretty much forgetting about me, not booking me a clinic follow up appointment when I was discharged (i had to book my own as I knew I was meant to be seen in about two weeks - didn't make it though, got admitted to Leics) and not liaising properly with my local hospital who had no experience of transplant patients. t seems there had been a few errors on their part with regard to follow up which they have admitted.  Unfortunately it seems apparent that had these not happened I would most likely not be in this situation now, something I am considering carefully at the moment.


Anyway...they did a bone marrow biopsy last week which was my day 90 biopsy due anyway, this is the only way to know what cell production is in my marrow.  I've been waiting a week for some results and today they told me that  there are cells in the marrow but not many, all the cells are male (which corresponds to my donor being male) which is a good thing, but as there are not many they are not making many other blood cells.  The question is now really is whether they can recover enough to raise my bloods and be ok.  I also still have Graft vs Host Disease on my skin a bit which again is a good sign that there are donor cells there and they are working.  My white cells have over the past 4 days started to increase, very slowly and by small amounts but still it is something.


So the plan of action....wait! They want to monitor me over the next few weeks to see what my bloods do and keep giving me the GCSF injections (cell boosters).  They want to get me off the steroids and are continuing to reduce my dose but that needs close monitoring as the GvHD can flair up (it has a little since i've been in here but that is not a bad thing at the moment) and also it affects how my marrow is suppressed so it is a bit of a juggling act with medications (cyclosporin).  In the meantime they will approach my donor again and see if he will donate more cells if necessary as this process can take a while.  Hopefully my cells recover themselves to adequate levels, if not they will give me a donor cell top up but thankfully it doesn't involve all the horrid chemo regime I had before etc... so should be ok.


I have always been very honest on here so thought I would add a couple of pics of before and during/after steroids...even though I cannot even look at myself in the mirror at the moment as I don't know the person staring back, I am going to be brave and share the pics with you as I think it is important, and you can see my hair growing back!   I have mentioned the side affects of the steroids, the main one is the 'moon face' (yes this is the technical term!), very sore, hot and hard swollen cheeks, swollen inside the mouth too, huge extra chin, hump on back of your neck and swollen neck.  These go away THANKFULLY..when on a lower dose and off the steroids...roll on a few weeks time... I need to feel like me again.

Pre - Transplant

Steroids! - Post Transplant

Oh incidentally today is the magical day 100...bit of a let down really! 


I also want to say thank you to my amazing friends and family who are a constant support, travelling all over the place visiting me, doing errands for me...bills still need paying, life stuff still needs sorting when you are sick...and buying me supplies and treats to stave off the boredom...and to Rich who is my rock...and who thankfully still has those rose tinted glasses on when looking at my horrific 'moon face'...i'll be back, I promise! 

Out of hospital and feeling good...

So I have been out of hospital after needing the anti viral drugs for just over a week now and I am feeling good and positive.


My GvHD is under control and they are reducing my steroids, they were reduced yesterday...can't wait to get off them, although it will be a few weeks yet, as it is the one thing that makes me feel rubbish.  They swell my face to the point it is sore and HUGE! but at least I know that it will go away when I am off them so it is a temporary thing to have to put up with.


They have also reduced the anti viral mediation I am on to control the CMV virus as that makes your bloods drop a lot and it means I have had very low blood for a few weeks now.  However once they recover which should start happening from now it will be good as we already know I have 97% donor cells in my marrow so they will kick into action as they won't be so suppressed. 


Linked to this is that my body has started transferring my blood to A+ which is the donors blood group.  I was/am O+.  What happened initially is that my red blood dropped very quickly as I was making antibodies to the 'foreign' A+ blood that my new cells were making so the blood cells were dying quickly, hence my need for transfusions a lot.  Now I am making both blood groups and because I am am coming off the anti viral drugs which were suppressing my blood cells it means that soon I will turn properly to A+ blood as they will be able to develop in my marrow to healthy full red blood cells.  It is all really fascinating! 


I am feeling much better about lots of things, very positive, so happy this is all working.  I still have a way to go but I see light at the end of the tunnel.  I can think more about the next couple of months and building my strength up to go back to work etc... and that feels really good.  At one point a month or so ago I felt so low and like I would be off work and poorly forever! I know, of course, you never know what could happen, but things are looking positive for now and I am very thankful for that.


I actually had some blood today and I wanted to mention the Northampton Haematology Day Centre...well it is now called the Macmillan Haematology Unit as they have just had a complete rebuild of the unit and Macmillan has paid for this...costing £2 million pound...This unit has been an essential part of my life for a few years now and has helped me so much.  It really is amazing in there now state of the art and so much more comfortable when you are not very well, sitting there for hours at a time having treatment.  The nurses are an exceptional team who I have become very close to and I wanted to let everyone know that they had to and are still fundraising to pay for the unit so if you want to donate then that would be lovely!  I wouldn't be here today if they hadn't been able to help me so much.  Prior to my transplant I was there twice a week having blood products to keep me alive, they were so accommodating to my life too, enabling me to have platelets in the morning before work etc...  Sorry if I went on there but it is important to me.


Anyway best be off...rich is cooking me dinner...with my instruction (he he)...I am a hazard with a knife at the moment with my shaky hands....again drug side effect related so will go soon!  Although with my new Kenwood Chef Mixer I am baking again which is a great therapy for me. Yummo!