Just wondering if everyone who has gone through the stem cell transplant as an inpatient (in the hospital) had a caregiver there during almost the entire time while in the hospital, or just after they have left the hospital?
I am trying to decide if I need one of my three caregivers – wife, daughter, or brother – to be there the entire time.
I know once I leave it's mandatory, but don't know whether it's important while I'm in the hospital.
AC
Forums
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: Caregiver presence during inpatient stem cell transplant
Hello AC:
Last February, my wife was in the hospital for 19 days. The center where it occurred had all the rooms single. In the "regular" single rooms, they had a reclining chair where a spouse or other relative could stay. My wife needed some extra cardiac monitoring (which in retrospect was probably not required), so they gave her a room with an unused bed. I was able to stay about 16 of the 19 days. I actually went to work 3 or 4 days directly from the hospital, and my employer was very, very good in that I could telecommute and use a flex schedule.
I do not think in any location it would be required to stay. The center may not have overnight facilities and showers that guests could use. Many centers, I think, would probably have some type of accommodation for spouses that would want to stay.
Good luck to you. Regards
Last February, my wife was in the hospital for 19 days. The center where it occurred had all the rooms single. In the "regular" single rooms, they had a reclining chair where a spouse or other relative could stay. My wife needed some extra cardiac monitoring (which in retrospect was probably not required), so they gave her a room with an unused bed. I was able to stay about 16 of the 19 days. I actually went to work 3 or 4 days directly from the hospital, and my employer was very, very good in that I could telecommute and use a flex schedule.
I do not think in any location it would be required to stay. The center may not have overnight facilities and showers that guests could use. Many centers, I think, would probably have some type of accommodation for spouses that would want to stay.
Good luck to you. Regards
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JPC - Name: JPC
Re: Caregiver presence during inpatient stem cell transplant
As with everything, it depends. Some people have stated that they were glad that they stayed because their partner had some pretty serious side effects that might not have been addressed as quickly if they hadn't been there in the hospital most, or all of the time. For me it wasn't necessary. My sister visited for an hour or two most days except during the days that we had the 2 blizzards while I was inpatient. Colleagues of mine who worked in the hospital where I was employed and having my transplant dropped by for short visits during their work day. During some of the evenings friends came for short visits.
I actually enjoyed the alone time that I had. If someone had been there all of the time, I probably would have felt that I had to "entertain" to some degree. It was good to be able to be quiet. Even when I came home, it wasn't necessary for my sister to be there 24/7. Since she came from 1,000+ miles away, I arranged dinner dates, theater tickets, etc. for her so she wouldn't feel isolated with me. Again it was nice to have the alone time when she was out doing other things. She did the cooking and cleaning that I couldn't do for a few weeks.
So, I would play it by ear. Don't plan on having someone with you 24/7, but find out what the policy is for someone staying if it seems that you need the extra care. It is nice to have someone with you for a while each day.
Nancy in Phila
I actually enjoyed the alone time that I had. If someone had been there all of the time, I probably would have felt that I had to "entertain" to some degree. It was good to be able to be quiet. Even when I came home, it wasn't necessary for my sister to be there 24/7. Since she came from 1,000+ miles away, I arranged dinner dates, theater tickets, etc. for her so she wouldn't feel isolated with me. Again it was nice to have the alone time when she was out doing other things. She did the cooking and cleaning that I couldn't do for a few weeks.
So, I would play it by ear. Don't plan on having someone with you 24/7, but find out what the policy is for someone staying if it seems that you need the extra care. It is nice to have someone with you for a while each day.
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: Caregiver presence during inpatient stem cell transplant
AC,
I plan on staying with my husband while he is in the hospital. If all goes well, he will only be in there long enough to get the chemo and infuse the stem cells – about three nights. Then off to the hotel for three more weeks.
Good luck!
I plan on staying with my husband while he is in the hospital. If all goes well, he will only be in there long enough to get the chemo and infuse the stem cells – about three nights. Then off to the hotel for three more weeks.
Good luck!
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Caregiver presence during inpatient stem cell transplant
It was a requirement to have a caregiver stay when my husband had his transplant. He was in hospital 10 days then sent to Hope Lodge for 4 weeks.
Re: Caregiver presence during inpatient stem cell transplant
I was in the hospital for 17 days for my transplant. I did not have a caregiver until I went home after the transplant. I was just fine by myself other than getting a little bored. I didn't have any major side effects other than some diarrhea, loss of appetite and nauseousness – nothing life threatening. So I didn't really need anyone with me on my behalf in the hospital.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Caregiver presence during inpatient stem cell transplant
My experience was much like Nancy's. My wife owns her small business and it would have been very hard for her to spend all of her time with me in the hospital (I was there for 15 days). She spent most of the day of the actual transplant with me, but that was the only day she did that. Otherwise, she would arrive in the morning with a pot of hot coffee and we'd sit for a couple of hours, talk, read the newspaper, etc. Then she'd head to work. I didn't mind the alone time at all.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Caregiver presence during inpatient stem cell transplant
I am the type of person who prefers to be alone when ill. My husband and son came to visit me on a regular basis, but I did not encourage them to stay long. I also did not want my friends coming to see me, which made some of them angry, but they respected my wishes. I really did not want people to see me at my worst. The nurses were my best friends in the hospital. Truly terrific human beings. I cannot say enough about the care that I received at Weill Cornell in New York City.
Having said that, I think everyone is different. Some people like company in that situation. I really felt so miserable that having to carry on a conversation with anyone was a burden.
Having said that, I think everyone is different. Some people like company in that situation. I really felt so miserable that having to carry on a conversation with anyone was a burden.
Re: Caregiver presence during inpatient stem cell transplant
My sister was with me the entire time I was in the City of Hope, and I'm so glad she was!
I was fine ... until I got a raging case of C. diff and then, whew.
I owe her. Big time. The docs tell me that because I have had such a good response to my autologous transplant (C. diff or no C. diff, I'm still in complete remission 2 1/2 years after my transplant), that when I relapse -- and because I have that pesky p-17 deletion, 'they' tell me I WILL relapse -- their first go-to move would be another transplant.
Evidently those who have long remissions after a first autologous transplant tend to do well after a second one, too.
I dunno if I'll be able to talk Barb into going through this with me again, though.
I was fine ... until I got a raging case of C. diff and then, whew.
I owe her. Big time. The docs tell me that because I have had such a good response to my autologous transplant (C. diff or no C. diff, I'm still in complete remission 2 1/2 years after my transplant), that when I relapse -- and because I have that pesky p-17 deletion, 'they' tell me I WILL relapse -- their first go-to move would be another transplant.
Evidently those who have long remissions after a first autologous transplant tend to do well after a second one, too.
I dunno if I'll be able to talk Barb into going through this with me again, though.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Caregiver presence during inpatient stem cell transplant
My wife is going through Dana Farber in Boston with the actual transplant being done at Brigham & Women's (admittance date June 25).
We had our poking/prodding/scanning day last week, and that included a long information session with one of the nurses that will be part of the transplant team. While visiting hours are pretty flexible, they do not allow overnight guests.
We had our poking/prodding/scanning day last week, and that included a long information session with one of the nurses that will be part of the transplant team. While visiting hours are pretty flexible, they do not allow overnight guests.
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jer14 - Who do you know with myeloma?: Wife
- When were you/they diagnosed?: January
- Age at diagnosis: 47
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