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  #1  
Old Thu Oct 31, 2013, 08:09 PM
Heather8773 Heather8773 is offline
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Day +21
Thank y'all so much for those who have been praying for us! Please keep praying! so far my husband has been doing very well and I thank God , all the people praying, and his medical team!And of course his Donor!!!
We moved into the condo last night so we are only 1.9 miles away from the hospital. Comforting and will make the 3xs weekly appointments easy.
Im proud of him for heeding the advise his medical team has been giving him. They told us the next two months continue to follow the guidelines and take it easy. In a couple months they will help him implement more activity and that makes sense to us bc it takes time for the incredible amount of work thats taking place inside to complete.
So step by step
But we're still praying for no GVHD complications and continued healing.
__________________
Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
Last edited by Heather8773 : Fri Nov 1, 2013 at 08:44 PM. Reason: Thanking donor as well!
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  #2  
Old Thu Oct 31, 2013, 08:31 PM
DebS DebS is offline
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Great news, Heather!!!

We are at Day +23. Keep him eating, drinking, and moving

Deb
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  #3  
Old Thu Oct 31, 2013, 09:38 PM
Heather8773 Heather8773 is offline
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Thank you Deb!
How are you and Doug?
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #4  
Old Fri Nov 1, 2013, 07:20 AM
Cheryl C Cheryl C is offline
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Well done, courageous people! Hope the good news continues. I pray for all of you who are undergoing transplants.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #5  
Old Fri Nov 1, 2013, 08:16 AM
DebS DebS is offline
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Thanks, Heather.

We are doing well. The eating has FINALLY turned a corner. He has pretty much the same thing every day, but he is eating three meals and getting in shakes to up the calorie count.

Every day he seems to get better and better.

We feel VERY lucky and blessed!

Deb
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  #6  
Old Fri Nov 1, 2013, 12:11 PM
susanML susanML is offline
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Wink Deb / Doug
Hi - You all are most certainly blessed and I hope you have continued luck. Take care -
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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  #7  
Old Fri Nov 1, 2013, 08:46 PM
Heather8773 Heather8773 is offline
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Thank y'all!
Deb I am so happy to read that!! Looking forward to reading about Doug's continued improvement!And yours as well Susan and Cheryl!
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #8  
Old Sat Nov 2, 2013, 07:57 AM
Susan L Susan L is offline
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Heather
Hi - So happy for your good news and moving along in the steps. I have a question - did your husband have a lot of bone pain prior to the transplant ? If so how is the pain level now? I will be joining you all shortly I find out Monday the timeline - but so curious about so many things. I have so much pain from the fibrosis and rheumatoid along with MDS that I am curious if that disappears also. Keep up the good work. Blessings to you both.
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Susan Patient, 58, MDS, UPDATED 9/13
Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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  #9  
Old Sat Nov 2, 2013, 04:49 PM
Whizbang Whizbang is offline
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Congrats Heather/Ron & Deb/Doug...!!

Hugs and prayers your way...

God Bless and be well...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #10  
Old Sat Nov 2, 2013, 08:23 PM
DonnaM DonnaM is offline
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Preparing for My Transplant
Heather:
A few months ago I told you that I would only have a BMT if it was a life or death matter. It became one this past summer when I relapsed with aplastic anemia. I will enter Houston Methodist BMT Unit next Thursday, Nov. 7th with transplant scheduled for Nov. 13th. I am glad to see that your husband engrafted so quickly. I hope to meet you soon at the outpatient clinic.
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Donna, age 61, hATG for Aplastic Anemia 8/2011, partial response, relapse 2013, BMT 11/2013, excellent blood counts, some GVHD (hair loss, itching)
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  #11  
Old Sat Nov 2, 2013, 10:58 PM
DebS DebS is offline
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Donna,

Best of luck to you. For my husband there was also only the choice of transplant. There are a lot of success stories out there. You know you always have cheerleaders and virtual hugs here!

Rest easy, eat, and exercise in prep for your transplant.

Best wishes and prayers to you.

Deb
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  #12  
Old Sat Nov 2, 2013, 11:00 PM
DebS DebS is offline
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Dave,

You amaze me with your posting every day!!! Keep up the great work!

Deb
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  #13  
Old Sun Nov 3, 2013, 01:40 AM
Heather8773 Heather8773 is offline
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Susan he only had some bone pain post transplant a couple of days and they were at a "3" on a 1-10 scale. He doesn't have the pain now. Are rheumatoid and or fibrosis autoimmune? I'm not sure so let me know what your Dr says but I feel like I've read a transplant can help w autoimmune disorders but weren't currently recommended if other treatment was available and it was the only dx. Pls let me know.
Ask any questions you want we have been very thankful to those who have been there for us
Donna I cannot express enough how much his medical staff at Methodist made this process as comfortable and pleasant as possible. I am excited for you to meet Evelyn all the Nurses are amazingly kind and intelligent. You are in incredibly capable, creditable hands!
We will be on floor 8 every Monday, Wednesday, and Friday so if your up to it we will come visit you message me if so
Dave hang in there your going to do amazing and remember you have earned the right to take it easy if you want any day you want. It's important for you to do so.
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #14  
Old Sun Nov 3, 2013, 09:17 AM
Susan L Susan L is offline
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Heather
Quote:
Originally Posted by Heather8773 View Post
Susan he only had some bone pain post transplant a couple of days and they were at a "3" on a 1-10 scale. He doesn't have the pain now. Are rheumatoid and or fibrosis autoimmune? I'm not sure so let me know what your Dr says but I feel like I've read a transplant can help w autoimmune disorders but weren't currently recommended if other treatment was available and it was the only dx. Pls let me know.
Ask any questions you want we have been very thankful to those who have been there for us
Donna I cannot express enough how much his medical staff at Methodist made this process as comfortable and pleasant as possible. I am excited for you to meet Evelyn all the Nurses are amazingly kind and intelligent. You are in incredibly capable, creditable hands!
We will be on floor 8 every Monday, Wednesday, and Friday so if your up to it we will come visit you message me if so
Dave hang in there your going to do amazing and remember you have earned the right to take it easy if you want any day you want. It's important for you to do so.
Hi - The other diagnosis are all after the MDS - just found out about the fibrosis at last bmb. I was just wondering if the transplant is gonna solve these issues at the same time, wouldn't that be something. I'm gonna ask at my appointment. Keep up the good work and best to you both.
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Susan Patient, 58, MDS, UPDATED 9/13
Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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  #15  
Old Sun Nov 3, 2013, 02:47 PM
DonnaM DonnaM is offline
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Heather:
I will be at the OPC tomorrow and Wednesday at 7:30. When I am inpatient, I would welcome a visit from ya'll! We will have a lot to discuss. Hope you and Ronald are having a good weekend in your home away from home.
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Donna, age 61, hATG for Aplastic Anemia 8/2011, partial response, relapse 2013, BMT 11/2013, excellent blood counts, some GVHD (hair loss, itching)
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  #16  
Old Mon Nov 4, 2013, 10:59 AM
Heather8773 Heather8773 is offline
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Donna how funny to think we are here at the same time! We will come see you when ever you are up for it! Maybe this weekend? Hope your weekend was nice. Weather was beautiful!
Susan I'm not 100% on this but I think that if the other 2 Dx (not the MDS) are considered autoimmune I think the transplant will fix all 3. Wouldn't that be amazing! But like I said I'm not 100% but I hope so!
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #17  
Old Tue Nov 5, 2013, 08:56 AM
Susan L Susan L is offline
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Heather
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Originally Posted by Heather8773 View Post
Donna how funny to think we are here at the same time! We will come see you when ever you are up for it! Maybe this weekend? Hope your weekend was nice. Weather was beautiful!
Susan I'm not 100% on this but I think that if the other 2 Dx (not the MDS) are considered autoimmune I think the transplant will fix all 3. Wouldn't that be amazing! But like I said I'm not 100% but I hope so!
I asked the doctor about all the pain and rheumatoid and fibrosis - he thinks the transplant should solve all - that would totally be amazing - I don't think I will know how to act. Still don't have a date - they are contacting the donors now to set a date of 9 wks from yesterday so they can back track from then for the chemo and tests. I believe I will have 5 days induction chemo then watch for counts to come up - but he is concerned since I have had this for so long - that they will not and doesn't want me to have transfusions prior to the transplant - then the other problem is my blasts - they have not come down and they need to be down to atleast 2 to 5%. Best wishes to you all.
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Susan Patient, 58, MDS, UPDATED 9/13
Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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  #18  
Old Tue Nov 5, 2013, 10:51 AM
DonnaM DonnaM is offline
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Heather:
If your husband feels like visiting after he is through at the OPC Friday, why don't you come back and find my room?
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Donna, age 61, hATG for Aplastic Anemia 8/2011, partial response, relapse 2013, BMT 11/2013, excellent blood counts, some GVHD (hair loss, itching)
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  #19  
Old Thu Nov 7, 2013, 11:00 AM
Heather8773 Heather8773 is offline
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Susan that is great news that the transplant will fix all three!!! I will keep you in my prayers!
Dona they switched his appointments to Monday and Thursdays so if we don't see you today we will come visit you this weekend ! (I have to work Friday)
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #20  
Old Thu Nov 7, 2013, 01:37 PM
susanML susanML is offline
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Heather -
Quote:
Originally Posted by Heather8773 View Post
Susan that is great news that the transplant will fix all three!!! I will keep you in my prayers!
Dona they switched his appointments to Monday and Thursdays so if we don't see you today we will come visit you this weekend ! (I have to work Friday)
I know - it is unbelievable - he did say it may - but I am going to look on the positive side. :-)
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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