Living with cancer
posted by tracie33
06 November 2013

Liver GVHD post transplant - Myelofibrosis

Last reply: 19 November 2013 15:12

Hi Im wondering if anyone has experienced or is going through what I am at the moment as Im getting very down & frustrated. I am 33years old diagnosed with Myelofibrosis in March & had my bone marrow transplant. I had some GVHD which cleared & was finally discharged from St James after 2months. I then started to feel a bit weak & my skin was jaundice yellow so I knew sometthing wasnt right. Upon check up beg Oct was admitted for Liver GVHD & 1 month later
Im still here. They said my Bilrubin is too high & need to wait for it to steady which so far it hasnt. Im receiving photopherisis treatment twice a week & still on lots of medication incl steriods. I cant sleep despite relaxants & sleeping tablets & I feel very low & depressed.
Mainly because there seems to be very little progress & no idea how long I will be here. Its already been a month making my total 3months in hospital. Im sick of magazines dvds etc at this stage & dont know what else to do. I heard the liver is very slow repairing but just wondering if anyone else has has this GVHD & how they got on. Sorry for long explaination all new to this
Thanks, T

1 comment

Comments

commented by Irish Cancer Society
19 November 2013

19 November 2013 15:12

Dear Tracie,

Thank you for your post. I hope that you will hear from others soon. You are having a lengthy stay in hospital which is not at all easy for you. Being there that duration away from home and also trying to pass the time and avoid monotony is difficult. It is most understandable that you feel very low and depressed at times. I hope that you have shared these feelings with the doctors and nurses looking after you so that you can have access to additional emotional support. You can also contact us here on the National Cancer helpline if you wish to speak with a cancer nurse our Tel. is 1800 200 700 and is free phone and open from 9am to 7pm Monday to Thursday and 5pm on Friday. Finally you could also consider placing a post on another forum like MacMillan in the UK so as to increase the opportunity to meet others in a similar position. http://community.macmillan.org.uk/

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