I recently went for a consultation about my current treatment and response at USC Norris in Southern California. It's about 200 miles from my home and is the only transplant hospital contracted with our insurance. So far, the staff and doctor have been great.
I was given the option to harvest and transplant at one time or harvest and wait for several months. I would rather just do all at one time, but due to several issues that my 94 year-old mother is having, I have decided to harvest in about a month first and do the transplant at a later date.
Some questions that I have are more about after coming home from the transplant. I have read several posts about having the house cleaned and making sure air ducts are cleaned, wearing a mask, shop early when going out, etc.
I am mostly concerned about home care. My wife can stay home for an extended leave to help out, but we both were wondering how long I would need someone to help out at home before I can deal with things on my own. I realize everyone is different and recovery is not the same across the board.
Also, how long would it be before I could drive again? Return visits to the transplant hospital will be another bridge to cross, due to the distance from my home. No family or friends near the transplant hospital.
Some feedback from others' experience after coming home after SCT would be greatly appreciated.
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Driving, need for home help after stem cell transplant?
I think this the answer to your question just depends on how YOU come through the transplant.
I was in the hospital for 17 days for my transplant. Prior to the transplant, I was told I would need a caretaker for at least 2 weeks after I returned home. The day I returned home I went for a 30 minute walk and went for walks every day after that. My appetite came back the day I got home. One of my biggest worries leaving the hospital was actually when my appetite would return. Anyway, I could have taken care of myself at that time. I could have driven a car and gotten around by myself with no problems.
Other people have not been as fortunate and still have lingering health issues upon returning home. Also, others have said that they have little or no energy to do things for awhile. But the problem is not knowing what kind of shape you'll be in when you get home. So you have to plan for the worst case scenario.
My sister was my caretaker for 2 weeks after I got home. I actually felt kind of foolish having her stay with me, because I didn't really need the help, but it was nice knowing that, had I gotten sick during that time, she was there to help me out.
About cleaning the house, etc., all that was done at my house was to wipe down surfaces with disinfectant wipes. We did the same with any groceries or other items that came into the house during the first few weeks. I didn't have the air ducts cleaned or anything like that. I wore my mask whenever I went out in public and tried to shop during non peak hours. I washed my hands a lot.
Perhaps someone else that needed more help upon returning home can comment, since my experience returning home was very easy.
I was in the hospital for 17 days for my transplant. Prior to the transplant, I was told I would need a caretaker for at least 2 weeks after I returned home. The day I returned home I went for a 30 minute walk and went for walks every day after that. My appetite came back the day I got home. One of my biggest worries leaving the hospital was actually when my appetite would return. Anyway, I could have taken care of myself at that time. I could have driven a car and gotten around by myself with no problems.
Other people have not been as fortunate and still have lingering health issues upon returning home. Also, others have said that they have little or no energy to do things for awhile. But the problem is not knowing what kind of shape you'll be in when you get home. So you have to plan for the worst case scenario.
My sister was my caretaker for 2 weeks after I got home. I actually felt kind of foolish having her stay with me, because I didn't really need the help, but it was nice knowing that, had I gotten sick during that time, she was there to help me out.
About cleaning the house, etc., all that was done at my house was to wipe down surfaces with disinfectant wipes. We did the same with any groceries or other items that came into the house during the first few weeks. I didn't have the air ducts cleaned or anything like that. I wore my mask whenever I went out in public and tried to shop during non peak hours. I washed my hands a lot.
Perhaps someone else that needed more help upon returning home can comment, since my experience returning home was very easy.
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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: Driving, need for home help after stem cell transplant?
This is a hard question to answer. I can only relate my own personal experience.
I am at about Day 72 post transplant. I was fortunate in that I did not have any serious complications and was released from the hospital on Day 16. However, I was extremely weak. As my oncologist said, my blood counts recovered, but my body didn't. One of the biggest challenges I had was with nausea and lack of appetite. It was a real struggle to eat, and I lived on chocolate milk for the first 6 weeks or so. I am only now starting to eat normally.
Post transplant I had oral thrush which is easy to treat. I also had a cold which lasted about 3 weeks, but did not produce any complications
I would say that you should plan on having someone with you most of the time for at least 30 days after you get home. I was able to drive after about 3 weeks at home, but really only went short distances. I still tire easily but have started to go back to work part time.
Recovery from a stem cell transplant is so individualized. You have to be prepared for so much, but there are a lot of people on the forum who feel fine in a surprisingly short time. Those people amaze me!
FYI. I am a 59 year old female. Small stature. No other comorbidities going into the stem cell transplant. Went into SCT stem cell with clean bone marrow and PET/CT. Not quite CR in blood, but close. Hoping that my 100 day checkup indicates CR. I hope the same for you.
Have your house cleaned thoroughly before you get home. Also your car. But you don't have to go crazy with that stuff. Separate your toothbrush and use separate toothpaste tube when you get home. Same with towels. A lot depends upon how your white count and immunoglobins are when you get home.
Good luck. I chose not to post during my stem cell transplant, but many others have. It is a personal decision. Try to have more than one caregiver if you can. It is a lot for one person to handle.
I am at about Day 72 post transplant. I was fortunate in that I did not have any serious complications and was released from the hospital on Day 16. However, I was extremely weak. As my oncologist said, my blood counts recovered, but my body didn't. One of the biggest challenges I had was with nausea and lack of appetite. It was a real struggle to eat, and I lived on chocolate milk for the first 6 weeks or so. I am only now starting to eat normally.
Post transplant I had oral thrush which is easy to treat. I also had a cold which lasted about 3 weeks, but did not produce any complications
I would say that you should plan on having someone with you most of the time for at least 30 days after you get home. I was able to drive after about 3 weeks at home, but really only went short distances. I still tire easily but have started to go back to work part time.
Recovery from a stem cell transplant is so individualized. You have to be prepared for so much, but there are a lot of people on the forum who feel fine in a surprisingly short time. Those people amaze me!
FYI. I am a 59 year old female. Small stature. No other comorbidities going into the stem cell transplant. Went into SCT stem cell with clean bone marrow and PET/CT. Not quite CR in blood, but close. Hoping that my 100 day checkup indicates CR. I hope the same for you.
Have your house cleaned thoroughly before you get home. Also your car. But you don't have to go crazy with that stuff. Separate your toothbrush and use separate toothpaste tube when you get home. Same with towels. A lot depends upon how your white count and immunoglobins are when you get home.
Good luck. I chose not to post during my stem cell transplant, but many others have. It is a personal decision. Try to have more than one caregiver if you can. It is a lot for one person to handle.
Re: Driving, need for home help after stem cell transplant
DallasGG and Ellen,
Thank you for your personal experience's with your transplants and when you got home afterwards. Fortunately, my wife can stay off work with a family medical leave for several weeks, if needed. I have always been one to not burden anyone and have always tried to deal with things on my own. but this will be a little different. I have always tried to stay in shape, riding my road or mountain bike. So I hope that will help a little when I do have the transplant. My thought is to eat well and try to do some form of exercise up to the time of transplant, if I can.
Thank you, Castaway.
Thank you for your personal experience's with your transplants and when you got home afterwards. Fortunately, my wife can stay off work with a family medical leave for several weeks, if needed. I have always been one to not burden anyone and have always tried to deal with things on my own. but this will be a little different. I have always tried to stay in shape, riding my road or mountain bike. So I hope that will help a little when I do have the transplant. My thought is to eat well and try to do some form of exercise up to the time of transplant, if I can.
Thank you, Castaway.
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Driving, need for home help after stem cell transplant?
Castaway-
My sister stayed with me for 4 weeks after I was discharged. Because I was so fatigued, I appreciated her being with me to do the cooking and shopping. I probably could have driven before I did, but I let her do it until I drove her to the airport to go home. She wasn't home with me the entire time. I made sure that she had things that were fun for her to do while she was in Phila. I set her up with dinner, movie and other dates with friends of mine. I was fine by myself.
I didn't do any special cleaning before or after I came home. I didn't wear a mask when I was in public. And, I did go out every day, even if for a short time. I went to movies, shopping, out to eat, etc. But, I did these things during parts of the day when there wouldn't have been any crowds.
The one thing that I was very careful about was not being around anyone who looked like they might be sick. I made sure my friends knew that if they came to visit that they couldn't come if they were coughing, sneezing or sniffling.
Be careful, but not crazy, post transplant. Most people do well.
Nancy in Phila
My sister stayed with me for 4 weeks after I was discharged. Because I was so fatigued, I appreciated her being with me to do the cooking and shopping. I probably could have driven before I did, but I let her do it until I drove her to the airport to go home. She wasn't home with me the entire time. I made sure that she had things that were fun for her to do while she was in Phila. I set her up with dinner, movie and other dates with friends of mine. I was fine by myself.
I didn't do any special cleaning before or after I came home. I didn't wear a mask when I was in public. And, I did go out every day, even if for a short time. I went to movies, shopping, out to eat, etc. But, I did these things during parts of the day when there wouldn't have been any crowds.
The one thing that I was very careful about was not being around anyone who looked like they might be sick. I made sure my friends knew that if they came to visit that they couldn't come if they were coughing, sneezing or sniffling.
Be careful, but not crazy, post transplant. Most people do well.
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: Driving, need for home help after stem cell transplant?
Nancy,
Thank you for the reply. Great information.
Since I was first diagnosed and started treatments, I have made it a habit to try and stay away from folks that are sick. I also started doing all my shopping early in the morning and really started using the self check-out a lot. I keep sanitizer hand wipes in the car. I usually know what I want before shopping and just get in and out.
These replies to my post are exactly what I was looking for.
Thank You, Castaway
Thank you for the reply. Great information.
Since I was first diagnosed and started treatments, I have made it a habit to try and stay away from folks that are sick. I also started doing all my shopping early in the morning and really started using the self check-out a lot. I keep sanitizer hand wipes in the car. I usually know what I want before shopping and just get in and out.
These replies to my post are exactly what I was looking for.
Thank You, Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Driving, need for home help after stem cell transplant?
I suffered from fatigue pretty bad for a few weeks after transplant. Took all I had to drive 30 minutes to work six weeks post SCT. Never really had too many side effects except for that nasty fatigue.
I'd plan for the assistance just in case you need it. In my case, I was glad my wife took six weeks off work.
Good luck to you. Jerry
I'd plan for the assistance just in case you need it. In my case, I was glad my wife took six weeks off work.
Good luck to you. 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
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