# Hello...my story... **URL:** \ **Category:** Welcome\ **Created:** [January 21, 2014, 4:24pm UTC](https://patientforum.anthonynolan.org/t/hello-my-story/15 "2014-01-21T16:24:05Z")\ **Posts on this page:** 10\ **Page:** 1
**Author:** ![SallyV](https://avatars.discourse-cdn.com/v4/letter/s/5f9b8f/32.png) [@SallyV](https://patientforum.anthonynolan.org/u/SallyV)\ **Post date:** [January 21, 2014, 4:24pm UTC](https://patientforum.anthonynolan.org/t/hello-my-story/15/1 "2014-01-21T16:24:05Z")
Hi I’m Sally, 33 yrs old. I had my first BMT for Aplastic Anaemia and Myelodysplasia in November 2011. I had previous ALG treatment for the APlastic Anaemia 10yrs earlier which worked for a while. Unfortunately the first transplant failed due to bad GVHD and the CMV virus reactivating, and the treatment for that virus was toxic to my new cells. I went on high dose steroids and ended up having a second transplant in June 2012. They used the same donor but harvested the cells differently the second time. I had terrible ‘moon face’ - very puffed up due to the steroids, I looked like a completely different person. The second transplant worked like a dream, it was a completely different experience. I still had issues with CMV but it was managed better, although meant I had lots of other drugs for treatment. My transplants were at Kings College London and I had some after care at my local hospital in Northampton. I was off work ( I am Regional fundraiser for the East Midlands for Teenage Cancer Trust, although was one for Marie Curie at the time) for 18 months in total, a very long time and overall spent 7 months in hospital. I am happy to say that now, 19months post transplant, that I am very well in terms of that. My bloods are all well up in the normal range. I am off my immunosuppression and will have venosections (not sure on spelling!) to get rid of the iron starting in a few weeks. A problem I have developed is Avascular Necrosis in both hips, so I need them both replaced. I walk with crutches and have lots of morphine for the pain. Both my hip joints have collapsed. This is due to the large dose of steroids I was on between my two transplants. They can cause lack of blood to the bones and lead to AVN. Bad luck I suppose but I am so very happy and grateful to be alive. I will never waste another moment of time. I still work full time and love my job. I am very happy to talk about everything so please ask me questions or chat if you want to. ---
**Author:** ![SallyV](https://avatars.discourse-cdn.com/v4/letter/s/5f9b8f/32.png) [@SallyV](https://patientforum.anthonynolan.org/u/SallyV)\ **Post date:** [January 21, 2014, 4:27pm UTC](https://patientforum.anthonynolan.org/t/hello-my-story/15/2 "2014-01-21T16:27:43Z")
I forgot to say I wrote a blog around the time I had my transplants which is here…[http://punkamunka.blogspot.co.uk/](http://punkamunka.blogspot.co.uk/) ---
**Author:** ![SallyV](https://avatars.discourse-cdn.com/v4/letter/s/5f9b8f/32.png) [@SallyV](https://patientforum.anthonynolan.org/u/SallyV)\ **Post date:** [January 21, 2014, 4:31pm UTC](https://patientforum.anthonynolan.org/t/hello-my-story/15/3 "2014-01-21T16:31:54Z")
Tried to put my transplant blog address in here but it removed it! ---
**Author:** ![Annie\_anthonynolan](https://avatars.discourse-cdn.com/v4/letter/a/ea666f/32.png) [@Annie\_anthonynolan](https://patientforum.anthonynolan.org/u/Annie_anthonynolan)\ **Post date:** [January 21, 2014, 6:10pm UTC](https://patientforum.anthonynolan.org/t/hello-my-story/15/4 "2014-01-21T18:10:11Z")
Hi Sally, welcome aboard and thanks for posting. I’m sorry your blog link didn’t show up. I will check and see if we can rectify that. Anneliese ---
**Author:** ![petervee](https://avatars.discourse-cdn.com/v4/letter/p/45deac/32.png) [@petervee](https://patientforum.anthonynolan.org/u/petervee)\ **Post date:** [January 22, 2014, 8:00pm UTC](https://patientforum.anthonynolan.org/t/hello-my-story/15/5 "2014-01-22T20:00:20Z")
Hello Sally, my name is Peter, I am a bit older than you at 65. Very interesting to hear of your experiences and 2 transplants! Pleased to hear the second was successful. My transplant was in May 2012, I didn’t have too much trouble with GVHD which was managed with short doses of steroids and lots of Diprobase. I was lucky too both me and the donor were CMV negative which was a big plus I believe ( thanks due here to Anthony Nolan for finding my donor). Its good that you have been able to return to work after such a long time off. In my case I was working up to transplant and then seized the chance to retire. Before transplant I had been having venesection for more than 10 years, I had an excess of iron in my blood known as haemochromatosis, this was managed by the venesection which keeps the iron levels at a safe level. Hope these comments are helpful. ---
**Author:** ![rtierney10](https://avatars.discourse-cdn.com/v4/letter/r/a4c791/32.png) [@rtierney10](https://patientforum.anthonynolan.org/u/rtierney10)\ **Post date:** [February 11, 2014, 7:04pm UTC](https://patientforum.anthonynolan.org/t/hello-my-story/15/6 "2014-02-11T19:04:57Z")
Hello I’m Becky, I had my transplant in 2012 at the age of 17 I had acute myeloid leukaemia with a flt 3 chromosome growing on top of the cancer. Due to all the medications I was on I now have secondary illnesses, such as osteoporosis in my spine, a vascular necrosis in both my knees and post traumatic stress disorder ---
**Author:** ![Vbutcher](https://avatars.discourse-cdn.com/v4/letter/v/e99b99/32.png) [@Vbutcher](https://patientforum.anthonynolan.org/u/Vbutcher)\ **Post date:** [February 16, 2014, 4:25pm UTC](https://patientforum.anthonynolan.org/t/hello-my-story/15/7 "2014-02-16T16:25:45Z")
Hi Sally I hope you don’t mind me asking what CMV problems did you have? I’m on my 3rd CMV activation. ---
**Author:** ![corfu80](https://avatars.discourse-cdn.com/v4/letter/c/977dab/32.png) [@corfu80](https://patientforum.anthonynolan.org/u/corfu80)\ **Post date:** [February 25, 2014, 9:14am UTC](https://patientforum.anthonynolan.org/t/hello-my-story/15/8 "2014-02-25T09:14:40Z")
Hi everyone, I’ve been posting since Jan but don’t know if I did this bit. My history - diagnosed AML April 2008, 3 courses chemo over next 4 months on a trial (think it was 15). Lucky to gain remission on first attempt. 6&9 chromosomes had changed places so worst prognosis for future, referred to Southampton for stem cell transplant from my brother. Underwent STC in August 2008. CMV & C-Diff 3 months after STC 2yrs later shingles in upper right quadrant of head & eye. Still get pain. Christine ---
**Author:** ![Beanie](https://avatars.discourse-cdn.com/v4/letter/b/6de8d8/32.png) [@Beanie](https://patientforum.anthonynolan.org/u/Beanie)\ **Post date:** [March 14, 2014, 3:04pm UTC](https://patientforum.anthonynolan.org/t/hello-my-story/15/9 "2014-03-14T15:04:32Z")
Hello Sally, Glad to hear your 2nd transplant has gone well and you are able to carry on with your life. Steroids have a similar effect on me. I had some heavy doses in 2006 and went from a size 12/14 at the start of the year to a 24/26 by the end, with the moon face and a hump at the back of my neck. Horrid drug but I guess it has its place in fighting the nasties. With me it takes about 18 months after getting of steroids before the swelling finally goes. Gosh how much better I feel when I can wear smaller clothes. I feel that having cancer has probably been good for me - other worries and trials do now seem insignificant don’t they. I try to live for ‘now’ and try to remain cheerful. I don’t always manage to do either but I do try because, for me, if I allow myself to mope around I semm to get even mor fed up. Anyway, all the best and I wish you well. Jean ---
**Author:** ![Beaglegirl](https://avatars.discourse-cdn.com/v4/letter/b/7ea924/32.png) [@Beaglegirl](https://patientforum.anthonynolan.org/u/Beaglegirl)\ **Post date:** [April 28, 2022, 8:56am UTC](https://patientforum.anthonynolan.org/t/hello-my-story/15/10 "2022-04-28T08:56:35Z")
Hi Sally, Just been reading your blog bout your second transplant.Would love to know how your doing? My husband is waiting for a second transplant also