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  #1  
Old Tue Aug 6, 2013, 09:32 AM
rainbows and glitter rainbows and glitter is offline
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getting ready for transplant day

So, I have been reading some of the posts here, and I am nervous about my upcoming transplant. I read a few stories where people had severe GVHD, and where they even died. I am terrified that I am going to get GVHD, or that after my transplant I may be sicker than I am right now...I have problems now, I would continue too have them if I declined the transplant...one statement in particuar has beenstuck in my mind, a woman wrote " He could've enjoyed his last few years with us and endure the MDS, it was a mistake to have the transplant." I am scared, and sadly most of my family and acquaintances are not taking the transplant seriously. they think I am just looking for attention I guess...The caregiver who is going with me is not very responsible, but I dont have anyone else. If it was'nt for him the hospital wouldnt let me come. But I wonder if he is capable of doing this.. Also the doctors tod me I can't apply for any disabiity until I have actually started the treatment, so I dont even know if I am going to have money for my expenses at home while I am recovering. I am starting to second guess my decision to have this transplant.
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27 year old female diagnosed MDS RCUD 2012, GATA2, multiple carcinomas in-situ, SCT 10/03/2013 @NIH, chronic GVHD starting 11/2015
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  #2  
Old Tue Aug 6, 2013, 11:33 AM
Sally C Sally C is offline
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Dear rainbows and glitter,
I am so sorry that your family is not supportive with your illnesses and pending transplant. It makes a horrible situation even worse.
I really can't address the issue of transplant as my husband didn't have one. All I can say is that NIH is on the cutting edge of these blood cancers. I believe they literally saved my husband's life. I know they don't treat any patients they don't believe they can help.
I hope this little tidbit of information helps. And I'm sure you will get alot of support on the forums.
I wish you well.
God Bless,
Sally
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  #3  
Old Tue Aug 6, 2013, 12:30 PM
4bcsboys 4bcsboys is offline
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Rainbows and glitter,
I found that many people do not understand the procedure (doesn't happen in an OR) and the recovery is prolonged. Some folks at work thought I'd be out 6 weeks, not 6 months, like a surgery. You had to be educated on this whole deal, maybe they need more information or time to understand. I had to be blunt for some to understand.

Focus those efforts on who you think MOST needs to understand so they can be the support you need. Maybe take someone with you to an appointment or pretransplant education.

I'm only 42 days old today, and everything has been pretty smooth, no major complications. I'm still learning about this prolonged recovery. What has helped me is to stay task-oriented, what needs to be done now, what needs organizing, or what list needs to be made. Take ONE day (or moment) at a time.

Make your decisions rationally and not emotionally. Ultimately it's your and your doctor's decision as to what is the best long-term option for you. I wish you the BEST!!
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Wife and mother of three young boys, diagnosed at age 39 with AA 2007; treated with ATG and cyclosporine; progressed to MDS end of 2012; MUD on June 26, 2013.
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  #4  
Old Tue Aug 6, 2013, 03:14 PM
KathyM KathyM is offline
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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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  #5  
Old Tue Aug 6, 2013, 09:32 PM
curlygirl curlygirl is offline
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I found this group on facebook, Bone Marrow and Stem Cell Transplant Survivors Club, through this site. It is a great source for inspiration and should help you focus on the positive. https://www.facebook.com/pages/Bone-...33642656665802 There can be bad outcomes but so many good outcomes, too. I'm sure NIH will do everything to make your BMT a success. And don't feel bad about being scared. Anyone needing a bone marrow transplant will be scared. Good luck and come back and post your success story when you're better!
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  #6  
Old Thu Aug 8, 2013, 06:13 AM
rainbows and glitter rainbows and glitter is offline
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thanks I'll check that out.
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27 year old female diagnosed MDS RCUD 2012, GATA2, multiple carcinomas in-situ, SCT 10/03/2013 @NIH, chronic GVHD starting 11/2015
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  #7  
Old Thu Aug 8, 2013, 06:50 AM
susanML susanML is offline
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Smile rainbows and glitter

Hope you are doing well - I am at work right now - but read your thread last nite and was thinking about you. Stay strong in yourself - and your faith- we can only count on ourselves and our faith in the long run. I understand being scared and alone as I have no other family it is my husband and myself. I have had MDS for years and have gone thru ATG treatment, Vidaza, Decadron and Rituxan for rheumatoid that I developed. I have now got worse again after along period of time and am being referred for a stem cell transplant. I am scared also but heck we got to do what we have to - to stay alive. I wish you well and will write and follow you later. (PS I had to change my log in as I forgot and changed computers)
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  #8  
Old Thu Aug 8, 2013, 01:06 PM
SAA Mom SAA Mom is offline
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Question ? FOR Kathy M

I a wondering what symptoms your husband is having for the gvhd of skin and gut. Also, how are they treating it?
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  #9  
Old Fri Nov 15, 2013, 07:27 PM
rainbows and glitter rainbows and glitter is offline
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Thanks everyone

I am just reading back through these posts and I am at day46 right now just got discharged. I put up a new post about my status and everything, and I think I am doing very well. Some gvhd but on steroids. I am trying to take your advice and one day at a time it...it's difficult with all the meds I feel anxious a lot. But I am gonna just keep putting one foot in front of the other till I get home. It sure helps to hear about other people going through this, you definitely feel a disconnection from the world after you come out of the hospital. Especially here it's so hectic compared to home. I only hope I can weather the storm till I get to see my family and great state Alaska again..
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27 year old female diagnosed MDS RCUD 2012, GATA2, multiple carcinomas in-situ, SCT 10/03/2013 @NIH, chronic GVHD starting 11/2015
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  #10  
Old Fri Nov 15, 2013, 10:38 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by rainbows and glitter View Post
It sure helps to hear about other people going through this, you definitely feel a disconnection from the world after you come out of the hospital. Especially here it's so hectic compared to home.
My wife felt very vulnerable when she was first released into the big scary world after 44 days in the hospital for her transplant. She also felt apprehensive when she moved from an isolation room back into a "mainstream" room.

It's like you were in a protective cocoon and now you're unprotected. Even though it's your goal to get to those "safe levels", you get used to the quiet and isolated environment.
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