An old post I found in my drafts...from October 2012 about Transplant number 2!

In May I started the conditioning treatment for transplant number 2 which involved another week long course of Chemotherapy and ALG.  It wasn't as bad the second time but maybe I was more used to feeling so ill.   Thankfully I didn't lose my hair again.

This is the chemo...
Its weird seeing it go into your body knowing you'll feel very ill very soon! 

Having said it wasn't so bad , it certainly was not pleasant.  I had sickness, lots of temperatures where I got bugs as I couldn't fight off anything myself, diarrhoea, stomach cramps, serum sickness (painful joints, tremors, fevers).

I then had the new cells given on 7th June 2012.  Then it was another waiting game for a few weeks to see if they'd taken and to keep me as healthy as possible in the meantime.

I blew up like a balloon again with water retention and because my kidneys were suffering and not working properly.  I reached the point where I could hardly move or touch my skin as it hurt so much and was laid flat in bed most of the time.  I needed the nurses to bathe me and help me change, I struggled to get to the toilet so a commode was right next to my bed.  I cried every time I moved with the immense pain I was in.  They had to put a syringe driver in my stomach which administered 24hr pain relief, I was on many painkillers including morphine.

I developed an allergy to penicillin too, which I had always been fine on before.  Wen I got a temperature, which was quite often, they had to give me immediate antibiotics and do blood culture to see what bug I had.  The first drug they would give, as a matter of course, through my Hickman line was meropenem, then they would move not stronger antibiotics.  A lot of these are penicillin based drugs and I erupted in an awful sore, itchy, bright red and lumpy rash so had to use steriod creams daily all over. 

 I still have skin discolouration on my legs from it.  I had to have a few skin biopsies to check what exactly the rash was and then they decided it was the penicillin.  So I need to remember that for life now.

I was on many medications.  The general ones I remained on were cyclosporin and mycophenolate which are immunosuppressants to suppress the immune system and stop my cells attacking the new cells.  The cyclosporin was bad for my liver and I kept having abnormal liver test results and hence they'd send me for liver ultrasounds.  Thankfully my liver was always looking normal but they took me off the cyclosporin and kept me on the mycophenolate instead.   I was also on omeprozole (for the stomach due to the stress it was under with the meds), folic acid (for cells), Azithromicin (antibiotic I will be on for life) and aciclovir (anti viral).  

My mood was so very low and it was at this time I thought it would have been easier to die.  What was the point in doing all this and putting myself through all this pain when it was all so uncertain.  I was causing pain to those who cared for me and couldn't see the light at the end of the tunnel.  I used to get worried and stressed about the future and who would look after my cat, what my family and friends were going through, what would happen with my job if I was off a long time, how would I pay my bills, how I could give my possessions to friends,  etc...  My lowest point was when I stopped thinking like that, about the future, and all I thought was I don't care.  I thought it doesn't matter what happens if I die because I wont be here.  That sounds so terribly selfish doesn't it.

It was then that I started seeing the specialist transplant counsellor.  I was diagnosed as suffering from depression and i was offered anti depressant tablets.  I didn't want them so I saw my counsellor every few days for a talk, he was brilliant and slowly i felt better and saw a little more hope.

My bloods started to improve slowly and I had regular GCSF injections to boost the white cells I had.  I started getting daily visits from the occupational therapist and physio to try and get me prepared for being out of hospital.  By this time I had spent over 7 months in hospital with only a few days out.  It meant I was very weak, could not stand up for long or walk more than a few steps.  I was unable to stand in the shower or even stand long enough at the sink to brush my teeth.  They helped me to regain my confidence and strength with exercises, helping me get ready each morning and taking me for small walks up the corridor.  I remember crying when I was finally able to wash my hair on my own, it was such an achievement for me at the time.

This is me just before discharge..looking a bit better...

After 6 weeks I was discharged.  I slowly didn't need any more platelet transfusions and then a bit later stopped needing blood transfusions.  My bone marrow biopsies were good and my day 100 post transplant biopsy showed I had good producing cells and they are 100% donor.

I visit kings hospital every other week and Northampton in between for blood tests.  I have got a lot of my strength back but have to take each day as it comes as no one day is the same as the last.

I am now on day 137 post transplant and all I can say is that it is hard, so hard.  I am doing ok but its certainly not all plain sailing....