Home         Forums  

Go Back   Marrowforums > Treatments > Transplants
Register FAQ Search Today's Posts Mark Forums Read

Transplants Bone marrow and stem cell transplantation

Reply
 
Thread Tools Search this Thread
  #26  
Old Wed Jan 8, 2014, 08:40 AM
DebS DebS is offline
Member
 
Join Date: Mar 2013
Location: IL, WI
Posts: 154
Heather,

I totally agree with Kris. Day +100 is a day to take a breath and see where you have come. But know there is so far to go.

As you know, we will be at Day +100 next week. I don't see us changing things up real soon. Right now with his stomach issues, Doug doesn't feel much like eating anything. Dinner out will not be frequent. And we have given up salad bars for the rest of our lives--both of us!

I will always have wipes in my purse, car and suitcase. I wipe everything down constantly and I am sure I will continue to do so.

It will be nice if we can introduce some fresh fruits and vegetables into Doug's diet. We were told two weeks ago that he could eat a banana if I washed it, peeled it and cut it. He loves fruits and vegetables and has not had any fresh in 7 months!

It is funny the things you learn. I have never used a sponge for the kitchen. Some of my friends do and I will NOT touch another one

Best of luck and stay the course.

Deb
Reply With Quote
  #27  
Old Wed Jan 8, 2014, 10:20 PM
dfantle dfantle is offline
Member
 
Join Date: Jan 2012
Location: bellevue, wa
Posts: 150
Heather, the thing that struck me the most about how careful i should continue to be after day 100, is when I watched a GVHD video on the Blood & Marrow Transplant site: http://www.bmtinfonet.org/

The video mentioned that GVHD risk &/or symptoms could increase with cold/flu or other illness, including food borne.

This made me decide not to put myself around anyone with any symptoms until my 1 year date (later this month). We even cancelled a planned flight, when my hematologist suggested that unless it was a necessary to fly on a commercial airline, she wouldnt recommend it until my 1 year date.

We did start eating out at 60 days as my counts were normal, but only at times when the restaurants were relatively empty. I made sure all my food was cooked to 165 & I still haven't eaten any non cooked food except at home, where I know its been properly cleaned. We avoided sitting near anyone who appeared to have symptoms & I am still 100% hands free everywhere except at home, using disposable gloves or paper towels to open doors...

At home, my husband continued to wipe down surfaces for 6 months post transplant and anyone entering our home had to be healthy and use hand sanitizer.

Truly we've been following most of these rules for almost 3 years because my immune system has been compromised since March 2011. These precautions worked so well that my first illness in more than 3 years was a cold end December. Even though we have been out and about quite a bit.
__________________
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
Reply With Quote
  #28  
Old Thu Jan 9, 2014, 12:01 AM
Heather8773 Heather8773 is offline
Member
 
Join Date: Jan 2013
Location: Houston, TX
Posts: 254
Deb it's funny when I realize the things that seem so germy to me now, or should I say shocking the things I didn't think were before!!! Sponges are super high on that list!!! Did you see the post I had about Ron's nutritionist advise about fruits and veggies (all berrys excluded)
Big bowl, one cup white vinagar, room temp water, rinsed and rubbed well veggies, soaked 10 min in the mixture. Then rinsed again cold water.
Anything that has a lot of hard to clean aspects (berrys, some veggies that you always find grit on) still avoid. But I would by the pre rinsed or organic when available spinach, kale, romane then soak those (Double clean!)
Ron loves and really missed fruits and veggies. I think that even w this wash they like for the nutriphils to be decent.
Ask Doug's Drs and maybe you can blend theses things for him or he can start eating them.
Dena thank you! I needed that advise! Those are the important things that really keep Ron on track. If he is given the reason for something's purpose it's easier for him to stay on track!
Kris thx again! I used that tonight w Ron " well so far the things your doing have been working so why stop now!" bc he's getting antsy!
__________________
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
Reply With Quote
  #29  
Old Thu Jan 9, 2014, 12:18 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Quote:
Originally Posted by Heather8773 View Post
Anything that has a lot of hard to clean aspects (berrys, some veggies that you always find grit on) still avoid. But I would by the pre rinsed or organic when available spinach, kale, romane then soak those (Double clean!)
When my wife was immunocompromised, she craved fresh vegetables but many of them were off limits. Canned vegetables can be nutritious enough but they just aren't the same. I remember separating the lettuce leaves and washing each one individually when she could finally have mixed salads.

Even now, years later, we're more careful than the average person. We're always wary of buffet lines; we would rather be near the front of the line than following a bunch of careless people.

With the recent scares about unsafe grocery store chicken, we're again reminded to protect ourselves from sources of infection.
Reply With Quote
  #30  
Old Thu Jan 9, 2014, 04:49 PM
dfantle dfantle is offline
Member
 
Join Date: Jan 2012
Location: bellevue, wa
Posts: 150
Heather, regarding the sponges. My transplant clinics food & home safety instructor from Fred Hutchinson advised to rinse them and put the damp sponges in the microwave for 1 minute before using again. She assured us the studies they've done show this to be fully effective. We kept 2 glass containers near our sink, 1 each for clean & dirty sponges & microwaved the dirty sponges daily (more if we ran out of the clean ones).

Though if your clinic suggested not using sponges this is likely what is follow if I was a patient at your clinic.

Best,
__________________
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
Reply With Quote
  #31  
Old Sat Jan 11, 2014, 12:20 AM
Heather8773 Heather8773 is offline
Member
 
Join Date: Jan 2013
Location: Houston, TX
Posts: 254
Great advise thx y'all!
__________________
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
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Double transplant - BMT and kidney (yes I might very well be crazy) Ninanna Tell Your Story 7 Tue Sep 9, 2014 07:24 AM
Questions to ASK at BMT Consult NLJabbari Transplants 4 Tue Oct 29, 2013 09:51 PM
?WHY?- low platelets STILL > 1 yr post BMT MGirl Transplants 2 Sun Mar 25, 2012 12:46 AM
How long does it take once they find possible match for BMT MaryAlisha Transplants 4 Thu Jul 3, 2008 11:49 AM
Update on BMT of 14th Feb 2007 Nina van Nunen Transplants 4 Mon May 28, 2007 03:59 PM


All times are GMT -4. The time now is 08:53 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org