Hi all, I'm a newbie to this site although I've was diagnosed with MDS and within that, Refractory Anaemia in March 2015 . Doesn't seem to be much of that around- no group for that so I've been advised by one of the super caring moderators that this is the group closest to my condition so if you allow me in, I'll be happy to unload my problems with you.
Right, MDS is apparently rare, so I can add that to my other rare disease, haemochromatosis. In fact the treatment for that is a factor that brought my MDS to light. Btw I've also a B12 deficiency and pernicious anaemia has been mentioned in the past. I was having blood removed weekly to lower my high ferritin level (haemochromatosis) when I collapsed one night and I was found to have a low haemoglobin level-82! So began the quest which ended with the MDS (refractory anaemia) diagnosis.Â
Well, for the last 18 months I've been injecting myself weekly with Aranesp which has helped my haemoglobin level although the general trend is slowly downwards, in fact it has dipped below 100 a couple of times. I've done a lot of research and frankly my future doesn't look good mainly because of my age-60 next birthday. I ran a question by my doctor about a bone marrow transplant and she said that SCT would be my best option BUT it probably wouldn't be offered because the operation would likely kill me! Anyone here could shed some light on this? I also have heart disease, diagnosed by my heart surgeon 6 years ago after a heart attack, followed by heart surgery (stent fitted). And I'm being treated for bilateral ulnar nerve problems, indeed just today I have received a date for my first operation - 19th October!Â
So you can see, there are complications. Does anyone know of 60+ SCT, successful I hope? There's always hope, hence the username .Â
Oh, one other thing! Almost forgot! Around the time of my MDS diagnosis I began to get back and leg pains which through all this got progressively worse, so bad that I can't stand or walk a little without severe pain. I'm now a wheelchair user and have to have a high daily dose of morphine although it's still not at a level that masks the pain. I have been advised by a consultant that an operation on my back wouldn't be of any help although he did offer me a second opinion from another consultant which I accepted and that's going to be in a couple of weeks. He, believe it or not is the brother of the surgeon who's going to operate on my elbow shortly!!
Sorry to unload my problems on you but I think they're relevant and if anyone is still awake lol can you give me hope please?
hope58
