Hi All
My husband is undergoing his stem cell transplant this weekend and would appreciate some input from people who have experience with this on the level of care that is needed on his return home afterwards.
I have made the following assumptions so would appreciate your input as I will be needing it for my discussions with my employer.
- Weeks 2-5 after his stem cell transplant he will possibly need hands on care meaning that it would be best for me to take leave during this period.
- Weeks 6-9 after his stem cell transplant he should be strong enough to not need hands on care and my assistance would be limited to possibly ensuring he is eating right, checking on him and just providing the assurance by being around? So it would be realistic to assume that I can work from home during week 6-9 if my work is computer based and that I could still be fully productive?
Thanks, I really appreciate your feedback.
Regards
Sharon
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shaznics - Name: Sharon
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 48
Re: Post Stem Cell Transplant Care
In my experience you're far too conservative. I was in the hospital 18 days, but after that I had no trouble caring for myself. I didn't have the energy to cook or do any of the things associated with independence, but I would assume he will be fine sometime after 2 or 3 weeks in self maintenance.
I'm assuming you'll cook in the evening and possibly in the mornings. I didn't have much of an appetite and I drank Boost, Ensure is the same thing, for lunch.
I'm assuming you'll cook in the evening and possibly in the mornings. I didn't have much of an appetite and I drank Boost, Ensure is the same thing, for lunch.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Post Stem Cell Transplant Care
I think everyone has a different experience but I was fine by myself during the day. My husband stayed with me for my first two days at home. Then he was at work for 12 hours a day including his commute. I was able to microwave food when he was gone but he did all the cooking, cleaning and shopping. With his schedule, he had it pretty rough. I was able to drive myself to my local doctor (only 10 minutes each way) starting two days after my release from the hospital but he took the days off to take me to the hospital for rechecks because I didn't have the strength to make the two hour drive alone. I was told I might not be able to go upstairs or drive for a couple of weeks but I didn't have that problem. I was nauseated off and on for about two weeks. I slept a lot during that time. So, I would guess that you won't need that much time off work but everyone's different.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Post Stem Cell Transplant Care
By week five I was on my own during the day. Week 8 I went back to work full time (desk job). Jerry
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Post Stem Cell Transplant Care
I really would have been ok by myself during the day after d/c from the hospital except for getting meals. Although, at that point I was nauseated most of the time and didn't eat much. I rested a lot, went out for a walk every day, and had visitors over. I wasn't allowed to drive so needed someone to drive me to the hospital for bloodwork and doctor visits. Even with someone doing the driving those tired me out completely, especially the first 2 weeks.
I'm good at entertaining myself so I sent my sister, who came to stay with me, out many days to have fun around the city. Unfortunately because of the blizzards we had while she was here, travel was kind of difficult. She went home after I was home for 4 weeks (6 weeks after transplant). I was fine by myself and had started driving again.
I went back to work as a physical therapist 10 weeks after transplant. It was sooner than I felt ready for, but my employer wouldn't hold my position any longer. I was really fatigued for a couple of months by the end of the day and wasn't able to do much other than collapse once I got home. Gradually things improved.
I hope your husband does well. You may not need to take much time off from work.
Nancy in Phila
I'm good at entertaining myself so I sent my sister, who came to stay with me, out many days to have fun around the city. Unfortunately because of the blizzards we had while she was here, travel was kind of difficult. She went home after I was home for 4 weeks (6 weeks after transplant). I was fine by myself and had started driving again.
I went back to work as a physical therapist 10 weeks after transplant. It was sooner than I felt ready for, but my employer wouldn't hold my position any longer. I was really fatigued for a couple of months by the end of the day and wasn't able to do much other than collapse once I got home. Gradually things improved.
I hope your husband does well. You may not need to take much time off from work.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Post Stem Cell Transplant Care
Hi Sharon. I hope the transplant process went well for your husband.
I agree with Joy that everyone's experience is different, but you probably will not need to stay with your husband as much as you are planning.
We were required to stay near Johns Hopkins for up to three weeks after my transplant. Turned out to be a good thing because I ended up in-patient for a week. I was pretty weak, so I needed help the week after I left in-patient and my first week at home. The next week, I was alone during the day but a friend stayed with me at night, just in case. After two days, I told her to go home. I was able to function on my own, and my daughter still came home every weekend to help me with grocery shopping. It took a while to fully build my energy back up, but I'm stubborn and independent.
Dana
I agree with Joy that everyone's experience is different, but you probably will not need to stay with your husband as much as you are planning.
We were required to stay near Johns Hopkins for up to three weeks after my transplant. Turned out to be a good thing because I ended up in-patient for a week. I was pretty weak, so I needed help the week after I left in-patient and my first week at home. The next week, I was alone during the day but a friend stayed with me at night, just in case. After two days, I told her to go home. I was able to function on my own, and my daughter still came home every weekend to help me with grocery shopping. It took a while to fully build my energy back up, but I'm stubborn and independent.
Dana
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Post Stem Cell Transplant Care
Thanks so much for the replies!
We do have a work from home policy in our company so was hoping to use that for two weeks after his 5 weeks thinking it would be helpful for me to be around.
The question did come up whether he would be too sick for me to productive if working from home. I have adviced them that by week 5 he will be fairly strong and I would just be preparing meals and assisting with transport for his check ups etc. and that I expect I could be very productive (my work is computer based).
Based on your experience, do you think this is a fair comment?
Kind Regards
Sharon
We do have a work from home policy in our company so was hoping to use that for two weeks after his 5 weeks thinking it would be helpful for me to be around.
The question did come up whether he would be too sick for me to productive if working from home. I have adviced them that by week 5 he will be fairly strong and I would just be preparing meals and assisting with transport for his check ups etc. and that I expect I could be very productive (my work is computer based).
Based on your experience, do you think this is a fair comment?
Kind Regards
Sharon
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shaznics - Name: Sharon
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 48
Re: Post Stem Cell Transplant Care
EJ came home after three weeks in the hospital, and was ready to go back to work within six weeks, although he ended up staying home for a total of eight weeks just because of the Labor Day holiday. He was by himself when he came home, and really had no problems getting himself cleaned and dressed, or preparing meals/eating. Mostly he was tired during the day and slept a lot, but as he got more of his energy back he was able to work from home, and start taking walks around the neighborhood.
Unfortunately, you won't know exactly how much your husband is going to need you until he gets home. Not to downplay the seriousness of a SCT, for many people it is less traumatic than you might expect, and the level of care required at home is not that hands-on. Whether or not you work at home or in the office is up to you, but I wouldn't feel like you must be at home during his recovery to be a good caretaker.
If I were you, I'd ask your boss for some flexibility during this time. Let your boss know that you'll have a better idea of what is going on and how much time your husband needs from you as your husband gets closer to being released from the hospital. There is no use using up the good will you have created with your boss -- or your vacation time -- if your husband doesn't really need you.
Lyn
Unfortunately, you won't know exactly how much your husband is going to need you until he gets home. Not to downplay the seriousness of a SCT, for many people it is less traumatic than you might expect, and the level of care required at home is not that hands-on. Whether or not you work at home or in the office is up to you, but I wouldn't feel like you must be at home during his recovery to be a good caretaker.
If I were you, I'd ask your boss for some flexibility during this time. Let your boss know that you'll have a better idea of what is going on and how much time your husband needs from you as your husband gets closer to being released from the hospital. There is no use using up the good will you have created with your boss -- or your vacation time -- if your husband doesn't really need you.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Post Stem Cell Transplant Care
My second SCT was12/10/13 16 days in hospital over Xmas time
Wife is teacher she was off for holiday After being home for about 6 days she went 2 work and called to check on me
Everything worked out fine stay hydrated move around when you can in 90 days it's a new U
Wife is teacher she was off for holiday After being home for about 6 days she went 2 work and called to check on me
Everything worked out fine stay hydrated move around when you can in 90 days it's a new U
9 posts
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