My husband was recently diagnosed with Acute mds. I am not even completely clear on the name. We are both shocked, feel constantly anxious and sick. I don’t know where to start for help. Hubby doesn’t feel up to talking to anyone but I need to.
He has been in hospital nearly 3 weeks as a week after his diagnosis he had an infection. They are offering intensive chemo then bone marrow transplant if we can get him into remission. This infection has meant I can’t see him except by video call and we have had 3 times where they thought he could come before starting treatment, all cancelled as the infection has not gone enough to resort to tablets. Now they may go straight to chemo with no gap at home.
I want to support hubby keeping positive but how? Any suggestions for best place for help and guidance and a chance to feel not so alone in this would be welcome
Hi and a second welcome to the Online Community but sorry you had to find us.
I am Mike Thehighlander and my friend tagged me into your post.
We don’t have a specific MDS group but do have had a number people with MDS appear in our dedicated Stem Cell Transplant (SCT) support group.
As you mention Bone Marrow Transplant (BMT) I automatically think Stem Cell Transplant.
I am 99% certain that he will actually be having a SCT as this is the main way this is done now but Haematologists still use the term BMT.
I have had two Allo SCTs with Stem Cells from my brother and over the years going through the treatment my Haematologist keep calling it a BMT - totally confusing.
You can look at my treatment story by hitting my Community name but a long story short - diagnosed with a rare type of Non Hodgkins Lymphoma in 1999. Lots of treatment ending up with my first SCT June 2014 and my second in October 2015 and in September 2016 I was told I was in Remission. This was a massive surprise as back in 1999 I as told my condition was incurable but treatable and I would never see Remission so I am a happy man and doing very well.
I have also talked with people with MDS at my SCT unit who have been through SCT and are now in long term remission.
Follow the link I've created above, join the group, then hit ‘start a discussion’ and you are ready to go.
You could then copy and paste the information from this first post into your new discussion or you can just join in with existing ‘Discussions’ by clicking on 'reply'.
I will keep an eye open for you and we can walk this together.
