Hello everyone,
My husband was diagnosed with multiple myeloma in June, 2013. He finished the induction therapy and we take the next step, stem cells transplant. We received the guidebook that contains general information about transplantation and he has an appointment with the transplant team in February.
We live 40 minutes away from the transplant center and the guidebook states that we have to live within 30 minute drive to the clinic. We prefer to stay home and drive to the clinic for any treatment needed after transplant. When I spoke on the phone with the transplant coordinator, I was told that is not an option and my husband may not be considered for transplant if we do not make arrangements for lodging within 30 minutes from the clinic.
Did anyone have a similar experience? 10 more minutes in driving to the clinic can be a problem after transplant? How often do you have to go back after released from the hospital? A shuttle from the housing apartments is safer in terms of infections and other diseases you can be exposed than your own car?
I am concerned, upset and lost. Thank you for taking the time to read my post. Any reply is greatly appreciated.
Good luck to everyone and God Bless.
Forums
Re: Housing after stem cell transplant
Hi Victoria,
When we first went to the transplant doc for EJs SCT we were lead to believe that his transplant would be on an outpatient basis with a similar 30 minute requirement. Although mileage-wise we were fairly close to the hospital, we live in the Metro DC area and traffic -- especially during the summer months when there is a lot of road construction -- can be a nightmare. I had to work throughout his transplant, and in the end, could not guarantee that I would be able to pick him up every afternoon at the time required. It also turned out that most of the hospital's SCTs were done on an inpatient basis, so that's what we ultimately decided to do.
While he was in the hospital and recovering from his transplant, EJ had a severe reaction to some of the antibiotics they were giving him. He was covered from head to toe with multiple rashes, his fever was spiking at over 105 and his heart went into A-fib. He had to be moved from the transplant ward to the cardiac ward, and it took almost a day to get him stabilized.
So I guess that's my way of saying yes, if there is a problem getting to the hospital quickly can be a big deal. Unfortunately, you won't know how hard or easy his transplant is going to be until you are in the middle of it.
Lyn
When we first went to the transplant doc for EJs SCT we were lead to believe that his transplant would be on an outpatient basis with a similar 30 minute requirement. Although mileage-wise we were fairly close to the hospital, we live in the Metro DC area and traffic -- especially during the summer months when there is a lot of road construction -- can be a nightmare. I had to work throughout his transplant, and in the end, could not guarantee that I would be able to pick him up every afternoon at the time required. It also turned out that most of the hospital's SCTs were done on an inpatient basis, so that's what we ultimately decided to do.
While he was in the hospital and recovering from his transplant, EJ had a severe reaction to some of the antibiotics they were giving him. He was covered from head to toe with multiple rashes, his fever was spiking at over 105 and his heart went into A-fib. He had to be moved from the transplant ward to the cardiac ward, and it took almost a day to get him stabilized.
So I guess that's my way of saying yes, if there is a problem getting to the hospital quickly can be a big deal. Unfortunately, you won't know how hard or easy his transplant is going to be until you are in the middle of it.
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: Housing after stem cell transplant
Hi Lyn,
Thank you for the quick reply. I hope your husband is doing well now.
Your answer makes me consider that the right way is to live close to the hospital after transplant. I hope, I can convince my husband too….
Can you please tell me how many weeks it took until your husband could go back home? I know the situation is not the same for everyone but, I am trying to plan things ahead and I need all the information I can get.
All my best for you and your husband.
Victoria
Thank you for the quick reply. I hope your husband is doing well now.
Your answer makes me consider that the right way is to live close to the hospital after transplant. I hope, I can convince my husband too….
Can you please tell me how many weeks it took until your husband could go back home? I know the situation is not the same for everyone but, I am trying to plan things ahead and I need all the information I can get.
All my best for you and your husband.
Victoria
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Victoria - Who do you know with myeloma?: My husband
- Age at diagnosis: 60
Re: Housing after stem cell transplant
Hi Victoria,
Welcome to the forum.
To help you as you're thinking about what to do in regard to your husband's housing situation after his transplant, you may want to check out these discussions here in the forum:
Out-patient stem cell transplant vs. one month hospital stay
Stem Cell Transplant - Your Experiences?
You also can see all the transplant-themed discussions here in the forum by following this link to a list of search results for the keyword "transplant", entered from the forum search box.
Hope this helps ... and good luck!
Welcome to the forum.
To help you as you're thinking about what to do in regard to your husband's housing situation after his transplant, you may want to check out these discussions here in the forum:
Out-patient stem cell transplant vs. one month hospital stay
Stem Cell Transplant - Your Experiences?
You also can see all the transplant-themed discussions here in the forum by following this link to a list of search results for the keyword "transplant", entered from the forum search box.
Hope this helps ... and good luck!
Re: Housing after stem cell transplant
I had 2 stem cell transplants. With first one, I stayed in apartment provided by HMC.
Wife stayed with me 11 days of treatment. Difficulty with nausea / diarrhea during the 3 minute drive to treatment center. Felt like crap most of time.
Second SCT 90 days later, stayed in hospital for 16 days mid December in New Jersey.
Fortunate for me, cause I had major problems with atrial fibrillation and was in a bad way physically and emotionally. Also, we had 2 feet of snow, and the hospital let my wife stay in my room.
We live about 40 minutes way by car so, either way, my wife was close.
My strong advise would be to stay in hospital cause lots of things can happen and you want treatment quick.
Stay strong!
Wife stayed with me 11 days of treatment. Difficulty with nausea / diarrhea during the 3 minute drive to treatment center. Felt like crap most of time.
Second SCT 90 days later, stayed in hospital for 16 days mid December in New Jersey.
Fortunate for me, cause I had major problems with atrial fibrillation and was in a bad way physically and emotionally. Also, we had 2 feet of snow, and the hospital let my wife stay in my room.
We live about 40 minutes way by car so, either way, my wife was close.
My strong advise would be to stay in hospital cause lots of things can happen and you want treatment quick.
Stay strong!
Re: Housing after stem cell transplant
To answer your question, EJ as in the hospital for 19 days. He would have been out a few days earlier if he had not developed the allergies and heart issues. Once they got this cleared up, and the offending drugs got out of his system he felt pretty good.
The hospital had a policy of getting all of the transplant patients up and walking a mile around the ward every day. Except for a couple of days when the nausea was really bad, EJ completed his laps every day. The nurses would laugh at us when they saw us taking our nightly stroll around the ward holding hands! When he got home, he made it a point to continue walking around our neighborhood, going a little further every day. Within a week or two he was working from home, and back to work in his office in about six weeks.
Hope that helps.
Lyn
The hospital had a policy of getting all of the transplant patients up and walking a mile around the ward every day. Except for a couple of days when the nausea was really bad, EJ completed his laps every day. The nurses would laugh at us when they saw us taking our nightly stroll around the ward holding hands! When he got home, he made it a point to continue walking around our neighborhood, going a little further every day. Within a week or two he was working from home, and back to work in his office in about six weeks.
Hope that helps.
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: Housing after stem cell transplant
I think it's very important to be close, though I think the difference between 30 minutes and say 45 is debatable. Particularly in the first 3 months, you could have some issues; some minor and some more, that you want to get checked out. I know as the patient that I felt much more comfortable knowing I could get to the center quickly if there was a problem.
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micallie
Re: Housing after stem cell transplant
After having 2 husband's go through stem cell transplants, one an auto and the other allogeneic, there is no question in my mind -- I would choose the inpatient stay. My feeling is: the closer the better for anything that can come up. Everyone is different, but just being inpatient, the staff is right there.
Wish you oceans of luck while you go through all this.
Wish you oceans of luck while you go through all this.
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Ehwhite
Re: Housing after stem cell transplant
Since I lived over 350 miles from Omaha, inpatient was the only way. UNMC has its own in house hotel which we used for the entire process. My sisters and wife, and daughters took turns staying there through the whole process, and when I was released for the out patient part, I stayed there because I was only 10 minutes (down the elevator and down the hall) from where all my testing was done.
My insurance covered this also. My insurance covered all other travel expenses also. Lucky me.
This room had two rooms -- a living room with a micro wave and refrigerator, and bedroom with two beds. This arrangement also let whoever was staying the opportunity to leave and be in the center of town closer to the interstate for those get-away times. Also it gave a great access to a major airport.
My stay start to finish was about six weeks.
My insurance covered this also. My insurance covered all other travel expenses also. Lucky me.
This room had two rooms -- a living room with a micro wave and refrigerator, and bedroom with two beds. This arrangement also let whoever was staying the opportunity to leave and be in the center of town closer to the interstate for those get-away times. Also it gave a great access to a major airport.
My stay start to finish was about six weeks.
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big bill
Re: Housing after stem cell transplant
Hello, I cannot imagine NOT being hospitalized for a stem cell transplant. I don't want to scare you, but there are so many potential complications. I did fine with 6 months of Rev, Dex prep, along with one high dose IV Cytoxan infusion, then Neupogen prior to autologous stem cell harvest. I entered City of Hope Hospital (Duarte, CA) July 2 and was released July 29 (yes that's almost one month!). First 2 days was high dose IV Melphalan, then my stem cells infused on day 3.
All was fine until my immune system plummeted (which is to be expected), and my Hickman catheter became infected and had to be immediately removed. I was very sick for over 2 weeks, but monitored and treated expertly. I was able leave the hospital when the infection was under control, and they provided home health care/ IV care for me for another month.
My SCT was highly successful and I reached full remission. I do believe everyone's case/circumstances are different, but I would not feel comfortable as an outpatient for such a serious procedure.
I wish you tons of luck with all your husband's treatment. Consult with your medical staff, and glad you posted this question to this forum for everyone's feedback.
Hoping your husband has a great outcome! Julie
All was fine until my immune system plummeted (which is to be expected), and my Hickman catheter became infected and had to be immediately removed. I was very sick for over 2 weeks, but monitored and treated expertly. I was able leave the hospital when the infection was under control, and they provided home health care/ IV care for me for another month.
My SCT was highly successful and I reached full remission. I do believe everyone's case/circumstances are different, but I would not feel comfortable as an outpatient for such a serious procedure.
I wish you tons of luck with all your husband's treatment. Consult with your medical staff, and glad you posted this question to this forum for everyone's feedback.
Hoping your husband has a great outcome! Julie
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Julie MM - Name: Julie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 30, 2009
- Age at diagnosis: 50
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