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Old Tue Aug 6, 2013, 03:14 PM
KathyM KathyM is offline
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Join Date: Mar 2013
Location: Philadelphia, PA
Posts: 23
I'm really sorry to hear that your family doesn't understand the seriousness of your condition. Maybe you could look for one of the many many support groups out there in your area to get at least some emotional support.

You'll be assigned a case worker when you go in for your transplant, talk to her (or him) and tell them the situation. Also, your caregiver will need to attend an orientation and hopefully that will give him some insight as to what can be expected.

As for disability, you can't apply until you are out of work. Start getting your paperwork together now, you can go online at social security and begin the application process and you can stop and go back at another time. You're going to need copies of all your tests and diagnosis, w-2 forms, etc. The more you have ready for social security (versus them having to get the information themselves), the sooner you'll be approved. A bone marrow transplant is on their list of approved disabilities. My husband submitted his application on his last day of work (March 2013), we heard back within 2 months that he was approved. However, they have a rule, no money is distributed until you are out of work for 5 months, so his payments don't start until October. The sooner you get started on that, the better.

As for the transplant, my husband had his on April 24th. No, its not easy and he has had some gvhd but today he had his 100+ day check-up and he's doing well! He's a lot older than you - 59 years old. So you have youth on your side! Please remember this about people who post on forums, oftentimes, when people are doing well - they don't come on the net searching for help or answers - many times its the ones who are having issues that come looking for support. You've heard the bad stories - but you just haven't found the good stories. Google "bone marrow transplant success stories" - you'll be directed to some blogs and stories about all the successes out there - and it helps a lot with your mental outlook. If you are interested in reading my husband's story go to caringbridge.org and look for dennismolyneaux. It's a story of hope and humor.

We were also so worried about what life would be like when he came home from the hospital. He had an allogeneic transplant, the recovery is expected to be one year. Yes, he was tired and wiped out when he came home. But he was able to dress himself, slept well, could fix his own food - so, its not as though he was bedridden, if that's what you're afraid of- in the past several weeks he's gone from being re-admitted to the hospital to feeling like his old self again. It's a journey, for sure. He's had gvhd of the skin and the gut and he had a virus which he is now recovered from. His counts have fluctuated all over the place - up down down up - but this is all to be expected.

Maybe it would be a good idea to educate your family about your condition - there is a wealth of information on this site and I'm sure your doctor or transplant coordinator can be helpful in directing you to legimate sites. They should have a lot of information booklets, etc. for you.

Best of luck to you, let us know how you're doing!
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Kathy, wife of Dennis (58 yrs old) diagnosed October 2012 w/MDS; bone marrow biopsy confirmed significant fibrosis;blast cells of 5%-10% of total cells, high risk refractory anemia w/ excess blasts (RAEB1); 3 cytogenetic markers; +1, -7, and +21
http://www.caringbridge.org/visit/dennismolyneaux
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