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Transplants Bone marrow and stem cell transplantation

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  #1  
Old Thu May 10, 2012, 10:01 PM
bettyliz bettyliz is offline
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SCT hospital survival tips

Hello all. I am currently at NW University Hospital day +7 of my husband's SCT. We came for the induction chemo in Feb, had complications and ended up staying for 51 days so I feel qualified to put together some tips for staying at the hospital. There is a tab called survival tips and suggestions on his blog www.sleist.blogspot.com

Godspeed all.

Betty
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  #2  
Old Fri May 11, 2012, 06:24 AM
squirrellypoo squirrellypoo is offline
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Thanks, Betty! I was curious and just had a read through your tips.

Wow, your husband's hospital experience was VERY different to mine - in a lot of respects, I could say the exact opposite of what you've listed! It might be worth stressing that hospitals vary a LOT in their transplant procedures, and that your tips may not apply elsewhere. The biggest is that I've never heard of non-patients being allowed to stay in the same room as the transplantee. I can't imagine that, it just makes me germ-crazy just thinking about it! Also, I love my husband dearly, but I think I'd kill him if I were trapped in the same room as him for 5 weeks, 24/7!

(I think the funniest thing going through my mind is "Wow, they provide razors put they won't let you put posters up?? What a strange place!" )
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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!)

Last edited by squirrellypoo : Fri May 11, 2012 at 06:25 AM. Reason: added more
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Old Fri May 11, 2012, 10:52 AM
Coping1 Coping1 is offline
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Quote:
Originally Posted by squirrellypoo View Post

Wow, your husband's hospital experience was VERY different to mine - in a lot of respects, I could say the exact opposite of what you've listed! It might be worth stressing that hospitals vary a LOT in their transplant procedures, and that your tips may not apply elsewhere. The biggest is that I've never heard of non-patients being allowed to stay in the same room as the transplantee. I can't imagine that, it just makes me germ-crazy just thinking about it! Also, I love my husband dearly, but I think I'd kill him if I were trapped in the same room as him for 5 weeks, 24/7!
Squirrellypoo,
Could you give a little overview of how your experience was different. I have been told a stem cell transplant is probably in my future and I'm trying to gather all the info that I can.

Thanks so much?

~Coping
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  #4  
Old Fri May 11, 2012, 02:44 PM
bettyliz bettyliz is offline
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Thank you Squirrel. I thought it would go without saying that all hospitals are different. I was just trying to help someone that might be looking for information as I was when we started out. Northwestern is not a strange place at all. Very very respected hosptial with very good stats for successful transplants.
I noticed you are from the UK so I would expect huge differences not just because of it being a different hosptial, but a different country, health care system etc. and the fact that things have changed a lot in the 3 years since your SCT. I agree with coping1 - would be nice to hear about your experience too. Congrats on your 10k!!! I can't wait to tell the hubby about your great health. Continued health to you. Oh and my husband and are are still newlyweds, so being in the same room is just fine by me!!

Quote:
Originally Posted by squirrellypoo View Post
Thanks, Betty! I was curious and just had a read through your tips.

Wow, your husband's hospital experience was VERY different to mine - in a lot of respects, I could say the exact opposite of what you've listed! It might be worth stressing that hospitals vary a LOT in their transplant procedures, and that your tips may not apply elsewhere. The biggest is that I've never heard of non-patients being allowed to stay in the same room as the transplantee. I can't imagine that, it just makes me germ-crazy just thinking about it! Also, I love my husband dearly, but I think I'd kill him if I were trapped in the same room as him for 5 weeks, 24/7!

(I think the funniest thing going through my mind is "Wow, they provide razors put they won't let you put posters up?? What a strange place!" )
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  #5  
Old Mon May 14, 2012, 08:29 AM
squirrellypoo squirrellypoo is offline
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I kept a pretty comprehensive thread updated with my transplant experience as it happened. You can read through the whole saga here. You might want to grab a cuppa and get comfortable, it's a long read (but it does have a happy ending!).
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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!)
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  #6  
Old Thu May 17, 2012, 09:35 AM
Lori Patrick Lori Patrick is offline
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My husband stayed a lot of overnights, as did 2 of my children. My eldest daughter brought her daughter (then 1 year old) to the hospital at least 3 times a day. I was on drugs - so I slept a lot. I do not remember a lot of what happened during my 6 week transplant stay. I say -- ask for drugs. God be with you. Lori
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Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
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