[JenB]

Hi Tamara,

I've never posted anything on a forum before in my life, but felt compelled to when reading this thread. I am unsure whether I should be starting a new thread with this but hopefully giving some background is ok to do here.

My dad died 2 weeks ago at age 58 after a brave battle with MDS which started 2.5 years ago. My dad had never had as much as a chest infection in his life before and had been an avid golfer, scuba diver and Krav Maga student. As none of us had heard of MDS before we didn't really know what this meant for our dad. His MDS was deemed to be low risk so the watch and wait approach was taken, with blood transfusions when needed. Unfortunately, my dad started to become more unwell with each transfusion, developing arthritis throughout his entire body and vasculitis too. 5 consultants were left scratching their heads as to the cause of this, as they had not seen such symptoms before. My dad went from playing sports to needing a wheel chair in the space of about 6 months and was in considerable physical pain. Steroids did the trick in getting these symptoms under control but, following a few bouts pneumonia, it was clear that my dad was a sitting duck, with it only being a matter of time before he would catch an infection that he wouldn't recover from. A referral to a BMT consultant followed and he was deemed unfit at that time to undergo the procedure. Initial chemo didn't help to manage my dad's symptoms but vidaza (what an amazing drug) did the trick and my dad regained so much in terms of quality of life. Ultimately, however, how long this would last was speculative and a return to arthritis and vasculitis was envisaged, with no BMT option open to him by that stage. The vidaza was therefore used as a means to get my dad well enough to undergo a BMT given his age. Unbeknownst to my sister and I at the time, his counts were becoming less stable, indicating a serious progression in his MDS, also confirming the need to quickly proceed with a BMT if this was the desired route.

My dad received a transplant on 15 January 2015 from a non-sibling donor - my bloodline must be common as muck, as we were very lucky to have a number of potential suitable donors! A match described as better than 10/10 (12/12) was chosen. Everything was going well to start with but fluid appeared to be building up on his stomach and he had difficulty with nausea and vomiting. He thankfully made it to my wedding on 15 March but had to have 12 pints of fluid removed the week after, mostly from his stomach and from his legs too. On 28 March he was re admitted to hospital and his condition deteriorated as a result of acute GVHD. He had significant vomiting and diaorreah (excuse my spelling), and the fluid kept returning to his stomach and ankles, causing the skin to split with the swelling. His stomach and bowel stopped working and his bowel perforated. His stomach was ulcerated, his oesophocous inflamed and his tongue black from infection. He was unable to move in his bed, requiring a team on nurses to roll him in his bed when needed. No promises could be made for an improvement in his mobility. His condition was described to us as critical, as you might expect from the above description. The doctors continued to fight the GvHD with various treatments, including exposing his blood to UV light to disable the cells attacking the body, returning the blood back into his body. The liver biopsy shed no light on the fluid retention. My dad sadly developed peritonitis, caused by the natural bacteria in his own gut and he passed away quickly and peacefully with his family by his bedside.

I'm still trying to come to terms with the disappointment that the BMT didn't work. However, I'm in no doubt that it was still the right route for him.

You can only make decisions based on the information available to you at the time. I think that as much information as possible should be given to patients on potential outcomes of any procedure and I know that my dad was given this.

I think that there is no right or wrong answer as to whether a BMT is the right route for any patient. It is really for the patient to decide the right course of action for themselves personally, since attitudes to risk will vary.

Unfortunately, BMT is unpredictable and, as in my dad's case, a great donor match does not guarantee success. Did my dad make the right choice in going through with the BMT, even though he might still be here today, for a bit longer, with Vidaza? Absolutely. My dad was a very proactive person and I know that the "watch and wait" approach was frustrating for him. If my dad had not opted for the BMT, we would have been faced with his death at some point in the not too distant future. Doctors cannot predict life expectancy with complete accuracy and any figure given on this would be presuming no major infection was contracted in the meantime. "What if" questioning is only natural in these circumstances and for me, personally, I find it a comfort to know that all possible treatment options were undertaken for my dad and that he had complete control over those choices. I must respect those choices. If my dad had not had the BMT, when he did eventually pass away, we would all be wondering "what if" he had had the BMT, maybe he would be one of the success stories? This would be a worse burden to bear, not only for us as a family but for my dad during the process of that decline.

To those of you undertaking a BMT or supporting someone though a BMT, I wish you every success, as it can indeed be a successful treatment. For those supporting someone experiencing complications with the BMT process, I wish you all the best in fighting these and please don't best yourself up about the treatment choice made - this does not invalidate the reasoning which led you to taking the chance in the first place.

Jen B