Janemcs
Posted by

Living with chronic Graft Versus Host Disease

Janemcs
Posted by
26 Apr 2017

Over a year since my transplant I am still suffering. It now looks like I am facing a future with chronic GVHD.

I had my transplant in February 2016 and as expected it took a really, really long time to recover. The literature I was given at the time said I could expect it to take around 6 months to fully recover and to start thinking about returning to work and a normal life. In my head I envisaged  enjoying the summer holidays with my husband and children and then being ready to return to work in September.

Well September came and went and I wasn't ready. I simply didn't feel strong enough and I was still reliant on steroids and other medication to manage some of the side effects of my transplant. Over the next few months I did start to feel stronger and I was gradually weaned off the medication. In my mind I felt I might be ready to start work in the new year and put a plan into place with my employers to begin a phased return to work in January.

Once again the plan was thwarted. I developed a severe chest infection and spent 8 days in hospital requiring oxygen and intravenous antibiotics to aid my recovery. Once I came home I was still very poorly. I got breathless very easily and even the simplest activity would leave me exhausted. Since then my lungs haven't recovered, and to add to my woes I started getting sore eyes....

Now , following some investigations, it's been determined that I have chronic graft versus host disease in my eyes, and probably in my lungs too (pending a few more tests). This has all come as a bit of a shock to me and I'm still reeling. cGVHD can't be cured, the symptoms can only be managed. My ophthalmologist has also warned me that the damage done to my eyes already may be irreversible. 

 

I had always imagined that one day I would be fit and able again and unimpeded in my day to day life but that may never be the case. I feel like I may always be a shadow of my former self.  Jane version 2, a slightly faulty version of the original.