Well it has been a long time, a year in fact, since I last wrote on my blog. I suppose this is a good thing because it means life has been getting in the way!
I've just read my last post from January 2013 and it was very positive, I was getting my life back on track and my bloods were doing really well. So here is an update from there on this roller coaster that is my transplant journey....
In January 2013 I was all set to return to work, having been off for so many months, however my body was not going to let that be a smooth process...I had a reactivation of my nemesis, the CMV virus. My bloods were much stronger at this point but it did mean I had to delay going back to work for a month because of needing intravenous drugs every 12 hours in hospital. I didn't want to stay in so went to Npton General twice a day for a couple of weeks. It was very draining and disappointing. However I successful got over that and returned to work in February 2013'
It was wonderful to be back at work as fundraiser for Northants, Leicestershire and Rutland at Marie Curie Cancer Care although it had changed a lot with staff changes etc... But in essence I was so happy to be back. I did unfortunately encounter a tough time, was overlooked by management because I'd been off sick and I felt very discriminated against. Anyway there is no point going on about that here, it is done and dusted. I felt it was time for me to move on from there and I successfully got the role of Regional Fundraiser covering East Midlands for Teenage Cancer Trust. I absolutely love my job and the charity is phenomenal, I've been in the role nearly 6 months now.
So that is a positive point.... However the medical problems did not stop unfortunately... I mentioned in my last blog post that I had pains in my legs. I was eventually diagnosed with Avascular Necrosis, which is basically the death of the bone. The steroids I was on, which were effectively keeping me alive between the two transplants, caused it. They can stop the blood supply to the bone, mostly in hips and knees, and cause the bone to kind of die. It has affected both my hips and my knees a little.
I have seen an orthopaedic surgeon and had MRI scans etc... They show that both my hip bones have collapsed and are in effect broken. I have to walk with crutches and it is extremely painful so I am on lots of morphine, although this makes me sleepy so can't take as much as I need. Hence the constant pain. It does get me down sometimes but I am still so very grateful to be alive.
I do need both hips replacing but the surgeon wanted to wait a few years as I am young. You can only have 2 new hips on each leg and they only last 10-15years each. However after lots of thinking I have decided I would rather be in a wheelchair at the age of 60 and mobile now! My transplant consultant has been very supportive and has asked the ortho surgeon to see me again soon and fast track the procedure on my right hip ( that is the worst), so we will see what happens.
It is another hurdle to climb but I don't see it as bad. It is just my mobility, I don't say that lightly, but the transplant was so much bigger. I know this will be tough but at least I am alive,
Recently, in October I had more stress and upset when my partner and I broke up, which was out of the blue and so heartbreaking given all we had been through. But l have this second chance at life so I need to live it as best I can and that is what I am trying to do now.
I must mention that I am astounded by the number of people all over the world who have read my blog and contacted me. I hope my rumblings help someone. Everyone's journeys are different but if I can help one person it is worthwhile....so watch this space for the next random instalment. I think I am due some good luck now so hopefully 2014 will be the start of that.
My wonderful friends and family have been amazing as every and carry me through the bad times. I will forever be indebted to them.
