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  #1  
Old Wed Mar 14, 2018, 11:45 AM
Barb Barb is offline
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Working from Home: Realistic?

As I am trying to navigate through my life financially as well as physically I don't know how to pace myself. I would like to do some remote work from home that I can do on my laptop. From where I am now, having done one round of dectabine, I could do that.

However, the plan is to do a transplant. Has anyone done remote work while having a transplant? Or how soon afterwards might I be able to consider working? I would be looking at something I could devote 10-15 hours from home over a laptop. Is that at all realistic?
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Barb. Diagnosed MDS 5q- in 2006. Stable until 2018. Dx high risk AML complex karyotype with TP53 mutation. On Dacogen, moving towards transplant.
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Old Wed Mar 14, 2018, 12:25 PM
GoodDay5150 GoodDay5150 is offline
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Hi Barb. You ask a good question. I had a reduced intensity transplant for PNH 6 yrs ago. In respect to my experience, I began feeling A LOT better soon after my transplant, primarily because I was no longer anemic. PNH causes your red blood cells to die off quickly, in case you are unaware of the disease. You obviously know that your dr's will not want you around a lot of ppl for a while after your transplant bcse your immune system will be compromised. You will also have a lot of dr's appointments, travel time, after effects of the treatments, etc etc. GVHD, if you have an unrelated donor is also common. My advice would be to give yourself a few months of focusing on your recovery b4 attempting any sort of work related activities. The whole transplant experience is hard on your body both physically and mentally, and it's best to focus on your recovery for a while afterwards.

Mario
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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Old Wed Mar 14, 2018, 07:45 PM
DanL DanL is offline
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You ask a great question. I think a lot of this depends on 1) how flexible the work schedule will be 2) how much brain power you need to do the work and 3) the physical demands of being active. I had a pretty rough go of it afterward, and definitely experienced the side effects of "chemo brain" from my full intensity transplant. My energy level now is about 50% of what it was prior to transplant, but mind you I worked 70-80 hours on a regular basis before. The biggest challenge I have is maintaining good health and regular energy levels, sleep patterns, and mental acuity -- it is still in more flux than I would care for.

I have read about people that are able to get back to work full time within a year, but I was not that person. I would suggest focusing on your health as much as possible, but if you can work from home either intermittently or on your own terms, than it may be worth trying.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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Old Thu Mar 15, 2018, 08:46 AM
Rarity Rarity is offline
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Hi Barb,
I'm glad this was brought up & can relate and wishing you well. My husband has been tossing this around regarding this important issue. He has a physical outdoors job so thinking maybe they won't allow him to return to work anytime soon after transplant? I know everyone's transplant situation is different.

If anyone would like to chime in who are/were in working years still after transplant how long it took until they returned back and if it was a physical or desk job?

All the best,
Rarity
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  #5  
Old Fri Mar 16, 2018, 05:47 PM
Barb Barb is offline
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Oh yes, Rarity, I too would love to hear the experiences of others after transplant.
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Barb. Diagnosed MDS 5q- in 2006. Stable until 2018. Dx high risk AML complex karyotype with TP53 mutation. On Dacogen, moving towards transplant.
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  #6  
Old Fri Mar 16, 2018, 06:30 PM
GoodDay5150 GoodDay5150 is offline
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As previously stated, I had a reduced intensity transplant. To the best of my knowledge, the post procedural instructions are pretty much the same for any type of allo-transplant.

http://oncolex.org/Prosedyrer/FOLLOW...n?lg=procedure


I had, and still do have, a desk job. I stayed w/ a caregiver for abt three months afterwards, and was away from work for abt 7 mos. I had the pretty usual GVHD, and if I rem right my doctor wanted to make sure that it was well controlled before returning to a normal life/ schedule. She was pretty confident abt my immune system working well.

Mario
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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Old Fri Mar 16, 2018, 08:19 PM
Meri T. Meri T. is offline
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Going back to work after transplant

Hello Barb,

I worked right up to when I was admitted. Then I took one year off for my transplant 4/2017-3/2018 (transplant was in 6/2017). I am supposed to be back at work next month.
However, I have requested for an extension of one more year-off 4/2018-3/2019, since I feel physically and also mentally that I am not ready to go back to work.

I tried preparing myself, doing some leftover admin work at home etc., Working from home is great because you can not only pace yourself, you can ensure your workplace is virus-free, germ free, fungus free, too.

But I tired out quickly: Chemo-brain, I got migraines, and my eyes flared up GVHD. It took me hours to do work I normally would have done in minutes.
Having gone through so much to cure my MDS, I didn't want to risk it, so I'm now still considering myself in "recuperating-mode" until June, my one year mark.

Every person is different. You are such a positive person. I wish you the best.
Meri
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Female 52, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. GVHD GI tract, liver, skin, eyes. Thanking God everyday for Life is wonderful.
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  #8  
Old Sat Mar 17, 2018, 04:29 AM
lisa3112 lisa3112 is offline
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Hi, I think you would be OK to work from home. I returned to work a year after my transplant, but I had a 2 yr old and nursing is quite physical. I am 2 years post now and I feel like I could go back to 4 days a week (currently doing 3) plus a 3 year old now. See how you feel. Personally work made me feel more "normal". Good luck.
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #9  
Old Fri Apr 6, 2018, 10:35 PM
Heather8773 Heather8773 is offline
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Hello

We were concerned financially about my husband taking a year off. He had a job that would have been very physical, around people and around chemicals and germs.

We made some financial decisions to prepare and decided health first.

Unbelievably grateful and totally unexpected his work offered him at 5 months a position were he could do some light work from home and when oked by his Dr light office work for the next year after.

For him chemo brain and I think just physically and emotionally and mentally drained (he always had a brave exterior though) kept him in resting and starting w small activities/tasks like puzzles or similar for the first 5 months then he felt able to start doing some things from home for work.

A big turn around was when he was at 90-100 days and he could finally come home and have our dogs around and feel like responsibility for them and the house. Small as they may have been each task a new mile stone.

I think the new normal and balance of listening to your body and the discipline of how hard to push and how much to just be ok w healing and discipline of making life work w the new rules for the new normal the first year or two is tough but it gets easier.

God bless
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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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