I know there are some specific rules to each facility, but could you guys share some general rules for spouses staying with stem cell transplant patients – like wearing of masks, eating in rooms, using the restroom and shower, etc.
Thanks!
Forums
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Spouse staying with stem cell transplant patient
Hi Dogmom:
You are correct, facilities are different with different rules. In my wife's case, I stayed all but 3 of the 21 days she was inpatient at Memorial Sloan Kettering. They expanded the transplant wing along the way over the years. The original transplant wing was all single rooms. The expansion part bumped some other condition, and that area has double rooms, so there was a bed for the spouse. So because they knew I wanted to stay and there was space available, that is where they put us. That was pure logistics, and it worked out fine.
I was very careful with the rules, however, I masked up and gloved and gowned fully for about 4 days when the white count was at or near zero. Outside of those days, when in the room alone with my wife, I did not have the mask on all the time. I was very concerned on the couple of occasions that I had to go out, that I would not bring something bad back in. I had to ride the New York City subway a couple of times for work, and I masked up on the subway so as not catch anything. My work was very good and accommodating, and I was able to get a good deal of remote work done at the hospital. I wound up having to take about 1 week of time off, rather than 3, so we were able to have a vacation later in the year.
Good luck to you.
You are correct, facilities are different with different rules. In my wife's case, I stayed all but 3 of the 21 days she was inpatient at Memorial Sloan Kettering. They expanded the transplant wing along the way over the years. The original transplant wing was all single rooms. The expansion part bumped some other condition, and that area has double rooms, so there was a bed for the spouse. So because they knew I wanted to stay and there was space available, that is where they put us. That was pure logistics, and it worked out fine.
I was very careful with the rules, however, I masked up and gloved and gowned fully for about 4 days when the white count was at or near zero. Outside of those days, when in the room alone with my wife, I did not have the mask on all the time. I was very concerned on the couple of occasions that I had to go out, that I would not bring something bad back in. I had to ride the New York City subway a couple of times for work, and I masked up on the subway so as not catch anything. My work was very good and accommodating, and I was able to get a good deal of remote work done at the hospital. I wound up having to take about 1 week of time off, rather than 3, so we were able to have a vacation later in the year.
Good luck to you.
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JPC - Name: JPC
Re: Spouse staying with stem cell transplant patient
My husband had his transplant at MD Anderson last May. I was allowed to stay the whole 17 days and was only required to wear a mask during a 2-3 day period while they were waiting for test results for C. diff. Once the test came back negative, that was no longer required.
I could eat in the room and usually just went to the cafeteria and brought my salad, sandwich, etc. back and ate with him (when he was able to eat). I wasn't allowed to use his restroom and had to go down the hall to a visitor restroom. I was allowed to use his shower, however, but only after he had showered because it had to be disinfected if I did.
Those are the things that come to mind – hope it helps.
Best of luck to you both.
Debra
I could eat in the room and usually just went to the cafeteria and brought my salad, sandwich, etc. back and ate with him (when he was able to eat). I wasn't allowed to use his restroom and had to go down the hall to a visitor restroom. I was allowed to use his shower, however, but only after he had showered because it had to be disinfected if I did.
Those are the things that come to mind – hope it helps.
Best of luck to you both.
Debra
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reece93 - Name: reece93
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 2014
- Age at diagnosis: 57
Re: Spouse staying with stem cell transplant patient
Thanks guys.
My husband had to stay a few days for kidney issues and a blood transfusion at the onset of diagnosis. He was admitted to the blood cancer floor and this is also the transplant floor. The transplant rooms were behind double doors at the back of the floor, so we never saw them. But even on the rest of the floor where we were I could not use his bathroom and had to go down the hall. I did not think about asking about the shower? I wish I had.
I just drove home but it is an hour drive so I will ask when transplant time gets here. Only one person was allowed back in the rooms but there was a family room he could go to for visits but he had to wear a mask when walking outside his room and could not leave the floor. We were told when he has his transplant he cannot have visitors except for his caregiver which is me. I also think they said no outside food could be brought in but I am not sure if that was for just him or me as well.
My husband had to stay a few days for kidney issues and a blood transfusion at the onset of diagnosis. He was admitted to the blood cancer floor and this is also the transplant floor. The transplant rooms were behind double doors at the back of the floor, so we never saw them. But even on the rest of the floor where we were I could not use his bathroom and had to go down the hall. I did not think about asking about the shower? I wish I had.
I just drove home but it is an hour drive so I will ask when transplant time gets here. Only one person was allowed back in the rooms but there was a family room he could go to for visits but he had to wear a mask when walking outside his room and could not leave the floor. We were told when he has his transplant he cannot have visitors except for his caregiver which is me. I also think they said no outside food could be brought in but I am not sure if that was for just him or me as well.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Spouse staying with stem cell transplant patient
My transplant center in Virginia did not allow anyone to stay overnight in my room, nor could they use my bathroom or shower. There were sinks in the hallway to wash up before entering the room and did not have to mask or gown since my health was ok. No food could be bought into the room. They did have a hospitality house the caregiver could stay. They were not allowed to sit on my bed. We were over 2 hours from home, so commuting from home was not an option for him.
Each center is different so you may want to get in touch with them. I was fortunate to have a pre-transplant coordinator who was available to answer all my questions as they arose.
Wishing you the best as you go through this. My transplant was sCR and I had no maintenance chemo for over 2 years.
Each center is different so you may want to get in touch with them. I was fortunate to have a pre-transplant coordinator who was available to answer all my questions as they arose.
Wishing you the best as you go through this. My transplant was sCR and I had no maintenance chemo for over 2 years.
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Music box lady - Name: Margie
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 60
Re: Spouse staying with stem cell transplant patient
I did ask while we were in the hospital if I would be allowed to stay with him when he has his transplant and they said yes. We live an hour away so it will not be hard for me to go home every few days to get clean clothes etc. for us.
They do have a washer and dryer for use in the family room but nowhere for caregivers to shower that I know of so if I have to go home for that, it is just as well to wash at home.
I suggested they need to work on the shower part and the nurses totally agreed. They even said they had suggested that many times. 
I am a planner type person and am just trying to get my ducks in a row so to speak.
Thanks for all the help!
They do have a washer and dryer for use in the family room but nowhere for caregivers to shower that I know of so if I have to go home for that, it is just as well to wash at home.
I suggested they need to work on the shower part and the nurses totally agreed. They even said they had suggested that many times. I am a planner type person and am just trying to get my ducks in a row so to speak.
Thanks for all the help!
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Spouse staying with stem cell transplant patient
There is a high rise apartment building adjacent to our cancer centre which can be used for patients and families from out of town, at low cost. It is not specifically for the families of myeloma patients though. One should book ahead, I think, through the cancer centre, since I have heard that it gets to be full. There are cancer centres in our smaller cities in Alberta too, but a patient may need some treatments that are not offered in his/her city, and low cost accommodation for those patients is helpful financially. For myeloma patients, auto stem cell transplants are only offered in our two large cities, Calgary and Edmonton. I think that allo (donor) transplants are only offered in Calgary.
I am not sure if a spouse can stay overnight in the transplant unit. It might depend on the situation. When I had my transplant, in 2010, the H1N1 virus was circulating, and some units in the hospital were on a 'lockdown' because of that. Most of the time, I was an outpatient anyways.
Probably people with more recent experience with a transplant could give advice also!
I am not sure if a spouse can stay overnight in the transplant unit. It might depend on the situation. When I had my transplant, in 2010, the H1N1 virus was circulating, and some units in the hospital were on a 'lockdown' because of that. Most of the time, I was an outpatient anyways.
Probably people with more recent experience with a transplant could give advice also!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Spouse staying with stem cell transplant patient
I am currently staying with my husband at Memorial Sloan Kettering. He is Day +5. Unfortunately, the regular transplant floor was full, so we have just a single room with a sleeper chair. It is working okay for us. I wear my gloves and mask in room and eat in cafeteria. Probably tomorrow I will be wearing a gown.
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Halches - Name: Carol S
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 7/15
- Age at diagnosis: 73
Re: Spouse staying with stem cell transplant patient
Halches: Best of luck to you and your husband. I hope he is one of the luckier ones that "skate" through the procedure. Regards,
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JPC - Name: JPC
Re: Spouse staying with stem cell transplant patient
I did my transplant as an outpatient. We stayed at a Residence Inn connected to Mayo (Rochester). We rented a 2-bedroom, 2-bathroom hotel room. One bedroom/bath for me, the other for my caregiver. I was a patient for 6 weeks and walked (through heated tunnels) from the hotel to the Mayo transplant center each day, and several days walked back and forth twice a day. Once I received my melphalan, I was required to wear a mask anytime I was outside my hotel room. My caregiver did not have to wear a mask. My caregiver cleaned the hotel room each day and cleaned my bathroom each day.
The hotel "deep-cleaned" our room upon check-in (a courtesy they do for transplant patients). Once that was completed, we did not let the hotel's housekeeping staff re-enter our hotel room. We gave them a list of supplies/linens we needed and the items were bagged and left outside our door. We brought our own vacuum, cleaning supplies, etc.
I was originally afraid to try my transplant as an outpatient. However, it went fine, with no complications. My caregiver(s) deserve all the credit for making sure I was in a sterile environment while at the hotel.
The transplant area I needed to report to each day was strictly for "outpatients", so I'm not sure what accommodations are provided for spouses staying in the hospital. I hope you have a transplant coordinator (like I had) who spent so much time going over every detail with me. Best of luck.
The hotel "deep-cleaned" our room upon check-in (a courtesy they do for transplant patients). Once that was completed, we did not let the hotel's housekeeping staff re-enter our hotel room. We gave them a list of supplies/linens we needed and the items were bagged and left outside our door. We brought our own vacuum, cleaning supplies, etc.
I was originally afraid to try my transplant as an outpatient. However, it went fine, with no complications. My caregiver(s) deserve all the credit for making sure I was in a sterile environment while at the hotel.
The transplant area I needed to report to each day was strictly for "outpatients", so I'm not sure what accommodations are provided for spouses staying in the hospital. I hope you have a transplant coordinator (like I had) who spent so much time going over every detail with me. Best of luck.
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CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
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