Hi. I'm new to this board. My dad was diagnosed 7 months ago, and he just recently finished his autologous stem cell transplant.
He was discharged a week ago, and from what I understand, everything is going very well. I saw him about a month ago, just before he was admitted to hospital for the ASCT, but I haven't seen him since, because I haven't been allowed to.
While he was in hospital, he and my stepmother told me that they weren't comfortable having me visit because I have small children who could be carrying germs, even though my children and I were all healthy at the time. I found that a little difficult to accept, emotionally, even though I knew that it was in his best interests, and of course I didn't want to put his health at risk in any way.
Now that he's been discharged, it seems that their new policy is that I'm allowed to see him, but only if I'm healthy (of course, that makes sense) AND everyone in my house is also healthy. One of my children has been sick with a cold and fever for the past week, so I still haven't seen my dad since before he was admitted, even though I myself have been healthy the whole time.
Of course I don't want to put his health at risk. And I'm sure that one day, everyone in my house will be healthy, though I don't know exactly when that will be, because it's possible my other child will catch it, or whatever.
My question is, is this what is normally done following a stem cell transplant? I had thought initially that as long as I was healthy myself, and washed carefully and didn't touch him, that would be sufficient.
Please don't misunderstand, I will fully respect his wishes, I'm not going to force my way into his house, I just want to understand if this is what people normally do, or not. Also I'm wondering when his immune system will be strong enough that these rules might be able to be relaxed (though I know of course that will ultimately be his call).
Thank you!
Forums
Re: Infection control after stem cell transplant
As you note and accept post-ASCT germs are an issue. There are no clear consistent answers since transmission of germs can occur despite the most exacting precautions. Having said that, it seems to me that there has to be a mechanism for transmission. So in your case if you wash your hands, wear a mask and don't touch your father the only transmission risk is if you have still have germs on your hands and touch something that he subsequently touches. Chances of transmission are very small.
Still, I understand the concern. In my own case I also did not invite my daughter to visit, even without her kids, until my absolute neutrophil count was in the normal range. Since then I slowly reincorporated myself into society and have gone back to work. I am more susceptible to colds and such but I view that as helping me to rebuild my immune system.
Still, I understand the concern. In my own case I also did not invite my daughter to visit, even without her kids, until my absolute neutrophil count was in the normal range. Since then I slowly reincorporated myself into society and have gone back to work. I am more susceptible to colds and such but I view that as helping me to rebuild my immune system.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Infection control after stem cell transplant
One of the nicest things that my family and friends did for me after my ASCT was to visit and go for short walks outdoors with me. I was really weak physically, and couldn't go for very long walks, but it was so helpful to have the company and the encouragement that way. I would wear a mask in the early days after my ASCT when going out anywhere.
My daughters are health care workers and thus are exposed to many germs throughout their shifts at work. They still visited me, but I was very careful about hygiene, and so were they. I got through the first 100 days and beyond that without having any serious infections. They would generally not wear their 'scrubs' when visiting, as I recall! My husband is also a doctor, and he would change out of his work clothes right away after work too!
When I could, after a year, I started to have all of my childhood vaccinations again. I still want to avoid situations where there are infectious diseases, although of course that isn't really very realistic. Hope that helps ... masks are really helpful. You can probably get them from your cancer centre!
My daughters are health care workers and thus are exposed to many germs throughout their shifts at work. They still visited me, but I was very careful about hygiene, and so were they. I got through the first 100 days and beyond that without having any serious infections. They would generally not wear their 'scrubs' when visiting, as I recall! My husband is also a doctor, and he would change out of his work clothes right away after work too!
When I could, after a year, I started to have all of my childhood vaccinations again. I still want to avoid situations where there are infectious diseases, although of course that isn't really very realistic. Hope that helps ... masks are really helpful. You can probably get them from your cancer centre!
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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: Infection control after stem cell transplant
I think the central question is hygiene and protection. If you use an alcohol hand sanitizer and wear a mask if you've been exposed to anything, I would think you could see him.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Infection control after stem cell transplant
I have not had a stem cell transplant, but it will be in my future eventually. I was wondering about animals. I have 2 inside dogs & the one is like my little baby. I also have 2 horses. Are these going to be a problem in any way for me to be around them? What has your experience been with this?
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Terri Michigan - Name: Terri Michigan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 45
Re: Infection control after stem cell transplant
After my transplant I caught a cold, turned into a lung infection, IV antibiotics, the night in the hospital. It was serious stuff!
A few months after transplant I caught a "24 hour stomach flu" from my nephew. I could not get out of bed for a week, not even to change my clothes. Too weak. Husband had to nurse me. It was horrible, I felt worse then I did at my transplant! Whereas my nephew threw up once and then seemed fine later that day.
With no immune system, these bugs that you or your kids may get mildly sick from can be really, really serious. For about 6 months, I was sick almost constantly after my transplant.
Your family has to decide what's best. Maybe you can visit without the kids and wear a mask if that would make them more comfortable? Also, wash your hands as soon as you go inside. It's your dad after all! Keep visits brief also, I preferred that after my transplant. I liked the company, but found it so tiring trying to entertain, hold up a conversation, etc.
My sister in law and her husband were both sick this past weekend, and were going to send their kids to my mother and father in laws. We had plans for dinner with them. I said that, if the kids are there, I'm not going, as I don't want to get exposed to germs they may be incubating (my sister and brother in law had strep throat and a stomach bug between them).
So, even after 3 years, I'm still worried about it! Too many bad experiences!
A few months after transplant I caught a "24 hour stomach flu" from my nephew. I could not get out of bed for a week, not even to change my clothes. Too weak. Husband had to nurse me. It was horrible, I felt worse then I did at my transplant! Whereas my nephew threw up once and then seemed fine later that day.
With no immune system, these bugs that you or your kids may get mildly sick from can be really, really serious. For about 6 months, I was sick almost constantly after my transplant.
Your family has to decide what's best. Maybe you can visit without the kids and wear a mask if that would make them more comfortable? Also, wash your hands as soon as you go inside. It's your dad after all! Keep visits brief also, I preferred that after my transplant. I liked the company, but found it so tiring trying to entertain, hold up a conversation, etc.
My sister in law and her husband were both sick this past weekend, and were going to send their kids to my mother and father in laws. We had plans for dinner with them. I said that, if the kids are there, I'm not going, as I don't want to get exposed to germs they may be incubating (my sister and brother in law had strep throat and a stomach bug between them).
So, even after 3 years, I'm still worried about it! Too many bad experiences!
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Infection control after stem cell transplant
Hi Cookiemonster,
In my opinion, during the first 30 days home, it's best to avoid anything that could make you sick. So, I wouldn't have been comfortable having people over who have sick people in their house. I couldn't go out in public, except for the doctor's office, in that time period, and during that time I had to wear a heavy duty face mask.
After the 30 days, I could go out and didn't always need the mask, but I was kind of freaked out. I'd hear someone sneeze in a store and I'd all but run in another direction. They say people with myeloma don't generally die directly from the disease but from organ failure or infection. That played in my mind.
I think that, after the 30 days, a lot should depend on your dad's blood counts and his comfort level. He might not quite feel up to visitors for a couple of weeks anyway. This time will pass pretty soon and, hopefully, you'll be able to see him like normal. It's really great that you care so much.
Hi Terri,
I have dogs but no horses. I was told that I could pet them and then wash my hands, but that I should not feed them for awhile and definitely not clean up any of their messes for an even longer while. Also, I tried to keep them from licking my face. I think wet food is more of a contaminant than dry dog food. I started feeding them after about three weeks since we use dry kibble, but I wore a mask and gloves. I didn't do any clean-up for them for months. My husband got stuck with a lot and we had a neighbor help out.
Check with your transplant team to see what they say. I 'm sure the restrictions would be even greater if I'd had an allo instead of an auto. I'm not sure what the restrictions are for horses. I know that birds present a problem, so different animals have different infection risks.
I was really worried about the whole pet thing, but the time passed pretty fast and things worked out okay. Best of luck to you!
In my opinion, during the first 30 days home, it's best to avoid anything that could make you sick. So, I wouldn't have been comfortable having people over who have sick people in their house. I couldn't go out in public, except for the doctor's office, in that time period, and during that time I had to wear a heavy duty face mask.
After the 30 days, I could go out and didn't always need the mask, but I was kind of freaked out. I'd hear someone sneeze in a store and I'd all but run in another direction. They say people with myeloma don't generally die directly from the disease but from organ failure or infection. That played in my mind.
I think that, after the 30 days, a lot should depend on your dad's blood counts and his comfort level. He might not quite feel up to visitors for a couple of weeks anyway. This time will pass pretty soon and, hopefully, you'll be able to see him like normal. It's really great that you care so much.
Hi Terri,
I have dogs but no horses. I was told that I could pet them and then wash my hands, but that I should not feed them for awhile and definitely not clean up any of their messes for an even longer while. Also, I tried to keep them from licking my face. I think wet food is more of a contaminant than dry dog food. I started feeding them after about three weeks since we use dry kibble, but I wore a mask and gloves. I didn't do any clean-up for them for months. My husband got stuck with a lot and we had a neighbor help out.
Check with your transplant team to see what they say. I 'm sure the restrictions would be even greater if I'd had an allo instead of an auto. I'm not sure what the restrictions are for horses. I know that birds present a problem, so different animals have different infection risks.
I was really worried about the whole pet thing, but the time passed pretty fast and things worked out okay. Best of luck to you!
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Infection control after stem cell transplant
Thanks, Joy, for the response. It seems like the whole transplant thing is terrible, especially for quite a while after you have it. How long before you felt like yourself again ... able to live a normal life again?
I am really scared to have this done. What happens if you chose not to have one? Personally, I haven't even started the chemo treatments yet. Only radiation so far, but the doctor said I will probably need to start chemo soon due to some lesions on my spine. I have been reading all I can about it, but it doesn't sound like fun at all.
Cookiemonster - I wish you luck with your situation with your father. I know it must be very hard. I know if it was me, I would want to see him, know for myself he was ok. You are doing the right thing by respecting their plan. Wish I could be of more help, but I am new to all of this myself. Best of luck with your situation.
Terri
I am really scared to have this done. What happens if you chose not to have one? Personally, I haven't even started the chemo treatments yet. Only radiation so far, but the doctor said I will probably need to start chemo soon due to some lesions on my spine. I have been reading all I can about it, but it doesn't sound like fun at all.
Cookiemonster - I wish you luck with your situation with your father. I know it must be very hard. I know if it was me, I would want to see him, know for myself he was ok. You are doing the right thing by respecting their plan. Wish I could be of more help, but I am new to all of this myself. Best of luck with your situation.
Terri
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Terri Michigan - Name: Terri Michigan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 45
Re: Infection control after stem cell transplant
Hi Terri,
The transplant is no fun but my experience was easier than I thought it would be. I posted mine here, adding it on to many other people's experiences:
https://myelomabeacon.org/forum/stem-cell-transplant-your-experiences-t2292.html
There's great debate about whether a transplant is your best option. Some studies show that transplant at first relapse is as effective as transplant upfront. A lot depends on your individual case of myeloma. It's a really a tough choice. There's a long discussion about it here.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
Wishing you all the best!
The transplant is no fun but my experience was easier than I thought it would be. I posted mine here, adding it on to many other people's experiences:
https://myelomabeacon.org/forum/stem-cell-transplant-your-experiences-t2292.html
There's great debate about whether a transplant is your best option. Some studies show that transplant at first relapse is as effective as transplant upfront. A lot depends on your individual case of myeloma. It's a really a tough choice. There's a long discussion about it here.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
Wishing you all the best!
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Infection control after stem cell transplant
Hi Terri I wouldn't get too worked up over the SCT, like Joy said it isn't all that bad. I would describe it more as getting wiped out and then slowly recovering. For me there was no pain and even in spite of a case of C-diff a lot of discomfort, just in limbo.
I had a problem with a low grade pneumonia that prolonged my recovery, but for me the time to feeling decent again was about 2 months, maybe a little longer. I think had I not had the pneumonia it would have been more like 6 weeks. I considered recovered when I actually wanted to do activities.
I had a problem with a low grade pneumonia that prolonged my recovery, but for me the time to feeling decent again was about 2 months, maybe a little longer. I think had I not had the pneumonia it would have been more like 6 weeks. I considered recovered when I actually wanted to do activities.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
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