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#1
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Day 105+!
Hi all! Last Saturday we celebrated Rons mile stone of day 100!
To celebrate I reluctantly agreed (only bc I'm a rule follower) to go 4 wheeler riding!!!! Ron popped on his mask loaded up the ranger (it's like a 4 wheeler w a top) in the truck and off we went. It's been a busy week for Ron. 4 wheelers, first 6 hour meeting at work, and drove his Grandma to a funeral in Kinder LA (3 1/2-4hours). All of these things are not 100% approved yet but I am bugging him lovingly to make sure his Drs know what hes been doing. And he's mask on, riding in front, excessive washing ect.... Pls consult w your medical team as Im not 100% on board w this much this quick but thanks be to God, donor, this site, and friend/family support, things are as good as they are
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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 |
#2
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Congrats on D+100 & D+105!!!
Ron is young, and his recovery is going to be 4 times as fast as someone twice his age, with that being said... I hope he's being careful on the 4-wheeler, God forbid he has an injury, it could lead to serious complications at this point... I understand Ron's got ant's in his pant's... it's just He's come so far; soon enough he'll be able to enjoy all that life has to offer... All the best & God Bless...
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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) |
#3
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Heather, what wonderful news! Congratulations!!
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com |
#4
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Great News!!. 3 months and done. They should all be like that.
4 wheeling sounds like a lot of fun, dirt and dust. The mask won't protect absorption thru the skin or eyes or whatever. The sun is the enemy and hard to avoid when outside. I'm no doctor but I watched a few episodes of "house" - Congrats! on the 100+ and many more to come. |
#5
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Congratulations! Even if it's on the riskier side, sometimes doing the things we love can give us a huge mental, morale boost that's worth more than the risk!
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!) |
#6
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Yay! Well done to both of you and may this great progress continue.
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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. |
#7
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Heather & Ron, congrats, definitely a milestone worth celebrating. Whoohoo!! Sounds like a fun celebration.
I would really caution about the 4 wheeling though (hope I'm not bursting Ron's bubble). Before my transplant when I was taking Cyclosporine to try & help keep my Aplastic Anemia in check (a little over 1 year after my ATG treatment), I asked my Hematologist if I could start gardening again, her response was " if you wear a full hazmat suit, including gloves & boots & goggles and a professional rubber gas mask with canisters, not the paper type ones, then maybe that would be OK". So I didn't garden. ( btw she's on the AA/MDS foundation board & is an experienced transplant doctor., so she well versed on all the "rules") The thing is, the darn spores & micro-organisms in soil can wreak havoc on a new immune system & this is why the rules are no gardening or being near construction projects (indoor or out) until at least 1 year post Transplant & longer if still in immunosuppression meds. Although 4 wheeling isn't gardening or construction, dirt kicks up, becomes airborne..., so could have the same effect. Best wishes
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Dena Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great Last edited by dfantle : Thu Jan 23, 2014 at 10:14 PM. |
#8
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Thx y'all I told his team while we were there last Monday and they gave him that look and asked some follow ups. Like were you riding in front, mask on? make sure you are using good judgement based on the info we've given you. And explained why it's a risk. I walked away from it shocked that he wasn't scolded but also that they know they can't cage a young man from everything forever and if he's going to do it anyway that at least they can educate him on the safest way. I think bc he has no other complications their watching (glory to God!) it made that response from them easier.
He scares me but I have to remember all of this new found energy is a really good thing. I've lately been questioning why I don't have as much as him! Lol Also although I want to control all of this I can't
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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 |
#9
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So true Heather. As long as Ron's aware, that's the key. You're an amazing caregiver
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Dena Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great |
#10
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Thx Dena!
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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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