Its been a while.....here is the update...

Last time I wrote was back at the end of November and I'd had a bad bought of infection in my lungs but was coming out of the darkside...or so I thought....here is the next chapter...with some pretty horrid pictures too but this is real life!


I seemed to get a lot better and was eventually able to come off of the oxygen.  On Thursday 8th December I was discharged and came home, a very long day as they take so long to let you out the actual hospital we didn't get home to Northampton until late in the evening as it is a long drive from Kings.  I felt Ok, I mean, how was I meant to feel after a bone marrow transplant.  I didn't think I was meant to feel great just yet!


I was still being sick many times a day, unable to eat much at all, if anything, so that was about 4 weeks without eating a proper meal at one point.  In fact just the thought of food was awful and made me want to be sick.  The thought of taking my medication...approx 30 tablets a day plus mouth washes, liquids etc... made me feel and be sick.  I felt very cold I remember and basically spent the next 2 days wrapped up under a duvet at home.  It was all a massive struggle but I was home so I just tried to wake up and function each day...I managed for 3 days!  I did manage to have one nice day with my brother who was over from Australia when I came out and we watched Harry Potter films in the living room! 


Monday morning came and it had been arranged for me to go to my local hospital as I had done before for blood tests.  It was this day I was readmitted to hospital.  My kidneys and liver were on the verge of breaking point, I had a temperature, my lungs were raspy again and I had developed very bad Graft vs Host disease on my skin, where a thick, sore, lumpy rash spread rapidy across my body as a reaction.


This was such a low time, I felt so ill and wondered sometimes if I'd see the next day and how much more I could take.   I got more poorly, went back on oxygen to help me breath and was blue light ambulanced down to Kings College Hospital at midnight on Thursday 15th December for more specialist treatment.  By now I was on oxygen again and had a severe lung infection and the Graft vs Host Disease (GvHD) was very bad.


So...back in Kings I was put on a large dose of steroids.  They try to avoid this but if the GvHD takes hold they have to do it, it is because steroids also act as a suppressant for the immune system which they don't want considering the fragility of the new system and already being on a drug called Cyclosporin which is a suppressant also.  I also had loads of fluids running constantly to try and flush my kidneys etc... I was put straight back on intravenous Antibiotics, antifungals etc...  I also underwent two broncoscopies (camera put down into your lungs - the most horrific experience!) to try and see what was going on and take samples.  I also had a 'blood eye' as i'd coughed and burst a vessel in it...pretty....

Blood shot eye

Bad times....

I can speculate a lot right now and this is an ongoing issue in my mind but I think and everyone (other docs etc....) seem to agree, I should never have been discharged that first time.

So I spent Christmas and New Year in hospital and I didn't care at the time, when you are poorly you don't!  It was actually around Xmas day I was feeling a lot better,  I was off the oxygen and I think I ate my first proper meal for weeks...my veggie Xmas dinner, hospital style.  A dry quorn fillet, potatoes, one stuffing ball, rock hard carrots & sprouts but at the time it was bliss to be able to eat it....in fact I had it for lunch and dinner! 

My veggie Xmas Dinner

Another nice touch, very unexpected, was on Xmas morning when four of my nurses came into my room singing 'We wish you a Merry Christmas' with a present (some M&S Bath smellies).


I found this second stint in Kings much different as there were different nurses due to the Xmas period and I felt a bit more isolated.  I have a lot to say about a few things I am really really unhappy about with regard to some of my care but that is for another time/another forum I think and unfortunately something I will be taking further.

Hair shaved off as coming out

What I look like now....

So here I am now....I was discharged on Tuesday 3rd January when my most amazing boyfriend (words now fail me when it comes to this brilliant man!) came to get me.  I am feeling so much better than when I came out before...that's why I know I was let out too early!  I have to be very careful about seeing people, catching colds etc.. as my immune system is so fragile, like a new born child but with all the other stuff going on too like having another persons cells.  I am on a lot of medication which is like a military operation daily.  My face is massive and round due to the steroids I am on (they have to wean you off of them slowly but roll on 21st Jan when I am off mine!)  I go to my local hospital 3 times a week for blood tests and check up with the doctors but I don't mind, I am just so happy to be feeling human again.


I am very weak, having been in hospital for 2 months only walking a few steps at most in my room means my muscles don't work properly (plus the steroids affect the muscles).  I really am just resting now, and I can tell you even resting makes me tired! I know I still have a long way to go but I feel like I am on the road to recovery.


I am now on day +56 post transplant and we are all aiming to get to day 100 without any more glitches...I have had one bone marrow biopsy so far (have another next week, every 30 days) which showed good results and the new cells working.  I have not had to have a platelet transfusion for at least a month (I was having these every 3 days before), my white cells are around 5 and holding their own, neutrophils were 4 at last count which is amazing for me.  I still need red blood sometimes but the levels fluctuate up and down and this is normally the last thing to settle.


There we go...I am sure I missed loads out but I was not in a fit state to communicate with anyone for such a long time.


Until next time, thanks for reading and caring!