So many of you have shared your stem cell transplant (SCT) experiences. I'm curious, though, what sort of things people do at home after a stem cell transplant, and the timing of returning to a normal life.
Do people usually hole up in a bedroom? Walk around the house with kids and pets? Pay bills? Do laundry? Share a bed and bath with your spouse? Wear a mask for a long timie?
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: In-home activities while recovering from an SCT
I think this will vary a lot depending upon the person. I can only speak for myself ...
I was in the hospital for 16 days for my SCT. When I got home, I was pretty weak, had no appetite, and really didn't go out much for a number of weeks, except to go to the hospital for my checkups. I showered and dressed everyday. I was probably able to cook a meal for my family after about 6 weeks or so. I did have a problem with nausea, so cooking was a challenge. I drank a lot of chocolate milk and tomato juice. For some reason, these drinks appealed to me. I didn't sleep very well at night, even though I was exhausted. From what I understand that is fairly common. Make sure that you get something to help you sleep when you are released from the hospital. I read, watched TV and had visitors.
To tell you the truth, the first couple of months after the transplant are kind of a blur to me now. Don't worry too much about keeping yourself occupied. You may not feel like doing too much. Although, you will probably hear from others that they were able to go out and do things after about a month or two, I really was not up to much. It was also winter, so perhaps that has something to do with it.
The good news is that all of this passes, eventually. But everyone heals and has different reactions to the transplant and all of the drugs used, so try not to get ahead of yourself. Concentrate on getting through the hospital part first. You can figure out what to do once you are home. I hope you have a good support network.
Wishing you the best of luck.
I was in the hospital for 16 days for my SCT. When I got home, I was pretty weak, had no appetite, and really didn't go out much for a number of weeks, except to go to the hospital for my checkups. I showered and dressed everyday. I was probably able to cook a meal for my family after about 6 weeks or so. I did have a problem with nausea, so cooking was a challenge. I drank a lot of chocolate milk and tomato juice. For some reason, these drinks appealed to me. I didn't sleep very well at night, even though I was exhausted. From what I understand that is fairly common. Make sure that you get something to help you sleep when you are released from the hospital. I read, watched TV and had visitors.
To tell you the truth, the first couple of months after the transplant are kind of a blur to me now. Don't worry too much about keeping yourself occupied. You may not feel like doing too much. Although, you will probably hear from others that they were able to go out and do things after about a month or two, I really was not up to much. It was also winter, so perhaps that has something to do with it.
The good news is that all of this passes, eventually. But everyone heals and has different reactions to the transplant and all of the drugs used, so try not to get ahead of yourself. Concentrate on getting through the hospital part first. You can figure out what to do once you are home. I hope you have a good support network.
Wishing you the best of luck.
Re: In-home activities while recovering from an SCT
I know my husband's journey through SCT was definitely not the norm, as he really didn't have a difficult time with it at all.
He never lost his appetite (ate 3 meals a day); he walked or rode the exercise bicycle every day; and he only had one incident of diarrhea where he wasn't able to make it to the bathroom. He didn't spike a fever at all and the one day he was feeling nauseous they finally figured out it wasn't really nausea but more acid reflux, which he is prone to. So they added in some Nexium-type drug and it eased that feeling completely. I think that, if anyone does have an issue with that pre-transplant, it's worth exploring if the anti-nausea drugs don't work during.
Anyway, he was released after 17 days (Day +13) and, while tired, he wasn't in bad shape. We planned the transplant so that, when he was out of the hospital, it would almost be spring, and I think the weather had a lot to do with his recuperation. The next morning he was so happy not to be in the hospital that we walked more than 2 miles before taking a nap. He found that he just had to pace himself. He could easily walk and do simple things around the house. He did have to take a nap every day for a couple of weeks, but after 5 days or so at home, he said that he could feel his energy coming back instead of dissipating immediately upon getting up in the morning.
So yes, we walked around town a lot. We have a cat and he was just careful to wash his hands after petting him. He didn't touch his food and still hasn't cleaned his cat box – come to think of it – at day +120 ... he may be milking that a bit too much
For ease until around Day +60, he slept in the guest room and used the guest bathroom, since that was so much easier on him and me – keeping it clean. If he was restless, it was easier for him to be in his room. He was careful not to do the things he was told he couldn't, but he helped make beds and fold laundry and unload the dishwasher. He took the mask with him when we went out for walks and put it on if he passed anyone mowing a lawn or if he went into the grocery store or pharmacy. He didn't wear the mask at home and we didn't have visitors until around Day +25 and, since it was May, we sat outside. No one wore a mask, but we were careful that no one had a cold and he didn't hug or kiss anyone. He wore the mask to the hospital until around Day +60.
He had no problem working on the computer – paying bills – or reading. 2 1/2 months later and he was enjoying having friends visit, going out to a restaurant, and even hosting friends for 4th of July BBQ. His dietary restrictions were relaxed around Day 60, but we were still careful about food temperatures and raw vegetables ... and still are even now at Day +120.
I know that his experience is unique and everyone's journey will be different, but you will find your way through it and come out the other side! Best of luck to you.
He never lost his appetite (ate 3 meals a day); he walked or rode the exercise bicycle every day; and he only had one incident of diarrhea where he wasn't able to make it to the bathroom. He didn't spike a fever at all and the one day he was feeling nauseous they finally figured out it wasn't really nausea but more acid reflux, which he is prone to. So they added in some Nexium-type drug and it eased that feeling completely. I think that, if anyone does have an issue with that pre-transplant, it's worth exploring if the anti-nausea drugs don't work during.
Anyway, he was released after 17 days (Day +13) and, while tired, he wasn't in bad shape. We planned the transplant so that, when he was out of the hospital, it would almost be spring, and I think the weather had a lot to do with his recuperation. The next morning he was so happy not to be in the hospital that we walked more than 2 miles before taking a nap. He found that he just had to pace himself. He could easily walk and do simple things around the house. He did have to take a nap every day for a couple of weeks, but after 5 days or so at home, he said that he could feel his energy coming back instead of dissipating immediately upon getting up in the morning.
So yes, we walked around town a lot. We have a cat and he was just careful to wash his hands after petting him. He didn't touch his food and still hasn't cleaned his cat box – come to think of it – at day +120 ... he may be milking that a bit too much
For ease until around Day +60, he slept in the guest room and used the guest bathroom, since that was so much easier on him and me – keeping it clean. If he was restless, it was easier for him to be in his room. He was careful not to do the things he was told he couldn't, but he helped make beds and fold laundry and unload the dishwasher. He took the mask with him when we went out for walks and put it on if he passed anyone mowing a lawn or if he went into the grocery store or pharmacy. He didn't wear the mask at home and we didn't have visitors until around Day +25 and, since it was May, we sat outside. No one wore a mask, but we were careful that no one had a cold and he didn't hug or kiss anyone. He wore the mask to the hospital until around Day +60.
He had no problem working on the computer – paying bills – or reading. 2 1/2 months later and he was enjoying having friends visit, going out to a restaurant, and even hosting friends for 4th of July BBQ. His dietary restrictions were relaxed around Day 60, but we were still careful about food temperatures and raw vegetables ... and still are even now at Day +120.
I know that his experience is unique and everyone's journey will be different, but you will find your way through it and come out the other side! Best of luck to you.
Last edited by Nanjeanne on Tue Aug 18, 2015 4:51 pm, edited 1 time in total.
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Nanjeanne - Name: Nanjeanne
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 66
Re: In-home activities while recovering from an SCT
Hello, Ggirl
There are restrictions about going out in public in crowded confined spaces for the first 100 days, and a low microbial diet, which means in part you should have fresh, home cooked meals.
As Ellen said, every person will be different. In my wife's case in February, she needed daily naps for about 2 weeks, but after that started to normalize in terms of not getting unusually fatigued, and then the issue shifted to being stuck in the house. Later, friends came over to visit, and they went for walks during the day. Initially, she was concerned with going out on her own (which was prudent).
I would avoid stressful situations. If you wanted to do work or housework, be very careful to start slow, and do not overdo it.
There is one area that I would push yourself a little bit, if you are up to it. That would be daily recreational walking. That would help you normalize. We had a very cold winter in the Northeast, which slowed us down in that regard. Consider getting an easy-to-use exercise machine.
As others have said, it can be a little bit of an ordeal, but it does pass. Good luck.
There are restrictions about going out in public in crowded confined spaces for the first 100 days, and a low microbial diet, which means in part you should have fresh, home cooked meals.
As Ellen said, every person will be different. In my wife's case in February, she needed daily naps for about 2 weeks, but after that started to normalize in terms of not getting unusually fatigued, and then the issue shifted to being stuck in the house. Later, friends came over to visit, and they went for walks during the day. Initially, she was concerned with going out on her own (which was prudent).
I would avoid stressful situations. If you wanted to do work or housework, be very careful to start slow, and do not overdo it.
There is one area that I would push yourself a little bit, if you are up to it. That would be daily recreational walking. That would help you normalize. We had a very cold winter in the Northeast, which slowed us down in that regard. Consider getting an easy-to-use exercise machine.
As others have said, it can be a little bit of an ordeal, but it does pass. Good luck.
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JPC - Name: JPC
Re: In-home activities while recovering from an SCT
I was very fatigued, I found the time great for reading. I am blessed for seeing my whole world with a different passion. It truly is a rebirth. I would say reading the other posts is very beneficial , but look forward more to your own soul. Celebrate each day!
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Crocetti
Re: In-home activities while recovering from an SCT
I received my auto transplant in February 2003 at the age of 66. It took me several months to feel strong and well, but by September I felt well enough to drive 1300 miles to start a new life in Arizona by myself.
While I was recovering, I lived with my daughter and family, I fixed my own meals, as my appetite was so bad, and I really had to think about what would appeal to me. I enjoyed having the cats around, but didn't have anything to do with changing the cat box.
The first couple months I didn't go anywhere but to the doctors. I didn't wear mask, it was never suggested to me. By the 3rd month I was driving again and going shopping.
Wishing you the best on your journey.
Hugs, Gloria
While I was recovering, I lived with my daughter and family, I fixed my own meals, as my appetite was so bad, and I really had to think about what would appeal to me. I enjoyed having the cats around, but didn't have anything to do with changing the cat box.
The first couple months I didn't go anywhere but to the doctors. I didn't wear mask, it was never suggested to me. By the 3rd month I was driving again and going shopping.
Wishing you the best on your journey.
Hugs, Gloria
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Glorialee
Re: In-home activities while recovering from an SCT
Today I am 6 weeks out from transplant. Last week, I hiked 21 miles, I started up with my weight routine and 15 minutes on the spin bike. Last weekend was the first weekend I stayed up all day. I am 65 years old. I road my road bike May and June as much as I could before the procedure, about 650 miles. I felt I should train for the procedure.
I have smoothies in the morning with fruit and vegetables. I have had raw fruit and vegetables and have washed everything carefully and, for blackberries etc., poured boiling water over them to clean. For lunches and dinners I have mostly eaten veggie soups that I made and froze before hospital admission.
I have stayed home and worn a mask to appointments. I have not worn a mask to hike as I never see anyone. I live near Lake Tahoe and have lots of hiking trails around my home. I work for myself and plan on working part time after 3 months, then full time in January. Mainly to avoid stress from clients and work.
I have smoothies in the morning with fruit and vegetables. I have had raw fruit and vegetables and have washed everything carefully and, for blackberries etc., poured boiling water over them to clean. For lunches and dinners I have mostly eaten veggie soups that I made and froze before hospital admission.
I have stayed home and worn a mask to appointments. I have not worn a mask to hike as I never see anyone. I live near Lake Tahoe and have lots of hiking trails around my home. I work for myself and plan on working part time after 3 months, then full time in January. Mainly to avoid stress from clients and work.
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Marydahl
Re: In-home activities while recovering from an SCT
You'll find that the instructions that each person receives for their transplant and the post transplant period are very different from one transplant center to another. I was discharged from the hospital at Day +13, too. I had horrible nausea and couldn't eat much of anything without vomiting. But, that didn't keep me from doing things. I also was quite fatigued so had to make allowances for that.
I made sure that I went out to walk, go shopping, go to the movies, go to restaurants, etc every day. I went to public places during times of the day when there wouldn't be many people there. I never wore a mask except for a few days in the hospital when my numbers had bottomed out. By the time I was discharged, the restrictions on diet had been lifted, except for the fact that I couldn't keep much of anything down.
I have two cats and they slept with me from the day that I came home. I didn't take care of the cat litter for about 2 months post discharge. I live in a one bedroom apartment so had to share my bathroom with my sister while she was here. She did the cooking and cleaning while she was here for 6 weeks. She also did all of the driving until she flew home. So I started driving at 6 weeks post transplant. People came to visit me starting the first day home. I just made it clear that if they had any kind of illness to stay away.
I went back to work full time 10 weeks post transplant. I wasn't ready, but I would have been terminated from my job if I hadn't gone back to work. I was quite tired and only went to work and then home to bed for about 2 more months. Gradually the fatigue decreased and I was able to do more. I still find that I need to make allowances for less energy than previously. I take naps on a relatively frequent basis.
I did a lot of reading when I was in the hospital and when I got home. I really enjoyed having the luxury of time to read as much as I wanted to.
Just take it one day at a time. You may not have any problems and breeze through the transplant. Don't worry too much about when you get home ahead of time because you won't know how you will feel until then. Just know that you have to be a little more careful about cleanliness than you normally do, but you don't need to be OCD about it. And, make plans for someone else to be doing the cooking and cleaning most of the time for at least a few weeks.
Nancy in Phila
I made sure that I went out to walk, go shopping, go to the movies, go to restaurants, etc every day. I went to public places during times of the day when there wouldn't be many people there. I never wore a mask except for a few days in the hospital when my numbers had bottomed out. By the time I was discharged, the restrictions on diet had been lifted, except for the fact that I couldn't keep much of anything down.
I have two cats and they slept with me from the day that I came home. I didn't take care of the cat litter for about 2 months post discharge. I live in a one bedroom apartment so had to share my bathroom with my sister while she was here. She did the cooking and cleaning while she was here for 6 weeks. She also did all of the driving until she flew home. So I started driving at 6 weeks post transplant. People came to visit me starting the first day home. I just made it clear that if they had any kind of illness to stay away.
I went back to work full time 10 weeks post transplant. I wasn't ready, but I would have been terminated from my job if I hadn't gone back to work. I was quite tired and only went to work and then home to bed for about 2 more months. Gradually the fatigue decreased and I was able to do more. I still find that I need to make allowances for less energy than previously. I take naps on a relatively frequent basis.
I did a lot of reading when I was in the hospital and when I got home. I really enjoyed having the luxury of time to read as much as I wanted to.
Just take it one day at a time. You may not have any problems and breeze through the transplant. Don't worry too much about when you get home ahead of time because you won't know how you will feel until then. Just know that you have to be a little more careful about cleanliness than you normally do, but you don't need to be OCD about it. And, make plans for someone else to be doing the cooking and cleaning most of the time for at least a few weeks.
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: In-home activities while recovering from an SCT
I had my auto SCT 3 weeks ago. I spent two weeks in the hospital, and I've been home for a week. I'm 56.
I had blood work 3 days ago, and all my values are normal, or steadily climbing towards normal. When I got out of the hospital, I still had some nausea and diarrhea, which has faded away, happily. I also had high anxiety levels, and a bit of depression. The whole process left me with a feeling that I can best describe as "wigged out & banged up" – but there is no place like home!
I am still eating light quantities of mild foods. I'm letting my body tell me how much of what to eat.
Something of note: When I got home, I had little motivation to do much, but as my energy level improves, so does my motivation. I do household chores, careful not to overextend myself, but I do them. It took me 2 days to mow the lawn, but I did it.
I have been "breaking the rules" by shopping for myself, but I'm careful to touch as few things as possible, shop during "slow" times of day, then clean up thoroughly. I live alone, and being away from work keeps me away from people. I almost feel well enough to go to work right now, but it would be a bad plan, since my job involves contact with LOTS of people. I almost visualize a situation where I feel fine, but the doctor prohibits my return to work for that reason.
I had blood work 3 days ago, and all my values are normal, or steadily climbing towards normal. When I got out of the hospital, I still had some nausea and diarrhea, which has faded away, happily. I also had high anxiety levels, and a bit of depression. The whole process left me with a feeling that I can best describe as "wigged out & banged up" – but there is no place like home!
I am still eating light quantities of mild foods. I'm letting my body tell me how much of what to eat.
Something of note: When I got home, I had little motivation to do much, but as my energy level improves, so does my motivation. I do household chores, careful not to overextend myself, but I do them. It took me 2 days to mow the lawn, but I did it.
I have been "breaking the rules" by shopping for myself, but I'm careful to touch as few things as possible, shop during "slow" times of day, then clean up thoroughly. I live alone, and being away from work keeps me away from people. I almost feel well enough to go to work right now, but it would be a bad plan, since my job involves contact with LOTS of people. I almost visualize a situation where I feel fine, but the doctor prohibits my return to work for that reason.
Re: In-home activities while recovering from an SCT
I had my auto stem cell transplant on April 14 this year. I was home in 14 days.
However, I had to be readmitted for a week. It is now August, just over 4 months. I was able to do pretty much everything around the home – slowly, very slowly. I contracted a virus, then got a secondary bacterial infection, which I am sill under treatment for.
I am nowhere back to normal. I suffer fatigue. Some days are good, others not so. But I know I will get better.
As far as what did I do at home, light housework stuff, no gardening, read books, watch telly and sleep.
However, I had to be readmitted for a week. It is now August, just over 4 months. I was able to do pretty much everything around the home – slowly, very slowly. I contracted a virus, then got a secondary bacterial infection, which I am sill under treatment for.
I am nowhere back to normal. I suffer fatigue. Some days are good, others not so. But I know I will get better.
As far as what did I do at home, light housework stuff, no gardening, read books, watch telly and sleep.
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Salzmav - Name: Salzmav
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 52
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