Post Stem-cell transplant patient + mold - how dangerous?
September 20, 2016 2:09 PM   Subscribe

My Mom just had a stem cell transplant for acute myeloid leukemia and is staying at my Grandparent's house. Our basement recently flooded and we've been ransacked with mildew/mold. The doc previously said that mold is a big no-no for patients taking post-transplant patients taking immunosuppressants - plus no way I trust myself to take care of cleaning mold thoroughly. My mom says she can't spend that much and would like to buy a HEPA air purifier instead to fix the problem - I don't think this is enough. What do we do?

She's about 15 days in post-transplant. I'm trying not to argue with her at this point as I don't want to stress her out any further, but she is really pushing to come home and is even trying to get me to hide from the doctor the extent of the mold problem. There's also some in her upstairs bathroom since she put off installing an exhaust fan until we had problems.

he wants to just buy a HEPA air purifier off Amazon - she claims will take care of the problem since it has good reviews and people swear by it; I vehemently disagree with her opinion (I don't say so) and say we need to ask the doctor whether that would be enough (I don't think so). I usually just say things like "let's see whether the doctor thinks the HEPA air filter would do the trick."

She doesn't want me to ask the doctor about the mold, which as a caregiver really stresses me out as I'm concerned for her life. She is trying to get me to underplay the extent of our issues - which my friend who works in construction agrees is icky even for a person with a functioning immune system - and doesn't want me to ask any questions that would "shoot her idea down."

I completely understand where she's coming from as she's feeling beat and just wants to come home, but I'm concerned for her life as the mold problem is pretty extensive. In my opinion, if we don't have professional work done then she should stay at her Mom's house until she's off the immunosuppressant (about 80 more days), which she adamantly refuses to do; she wants to be home in the next 30 days or so.

Doctors/stem cell patients of Metafilter: How would you proceed in this situation in such a manner that doesn't stress out my Mom? Should I give the doctor's office a call and ask when I'm not around her? Should I try to talk her down so I can ask the doctor? OR is a HEPA purifier really enough? I've tried to clean what I can thus far but I know it can be behind walls/etc and the flooding damage was pretty extensive.

I know he's really busy and it's very difficult to get an appointment with him - we're seeing him this Thursday and I'm sure I wouldn't get to speak with him personally on the phone. I'm semi-freaking out and could really use some advice!
posted by CottonCandyCapers to Health & Fitness (13 answers total) 1 user marked this as a favorite
Not a professional, but my father had a stem-cell transplant for AML and I am pretty sure he was still in the hospital at 15 days post-transplant, but even after getting out and going home, there were some MAJOR precautions taken on all fronts to make sure nothing harmful was in the air or the general area near him. Hopefully some medical professionals will chime in, but I'd recommend getting a medical opinion on this behind your mother's back (and I mean her doctor, not just here). Seriously. Can you call the hospital where she had the transplant and speak to someone other than her doctor (a nurse or other patient advocate?)
posted by DuckGirl at 2:30 PM on September 20, 2016 [1 favorite]

A previously healthy friend of mine has been in the ER last week due to symptoms caused by mold exposure from water leaks in her office building. She had been using a HEPA air filter thinking that would be enough to keep her office air clean while they fixed the problem.
posted by ilovewinter at 2:34 PM on September 20, 2016 [3 favorites]

Call the doctor's office. There will be a nurse you can talk to on the phone. Your mom being mad at you vs. your mom's life possibly being at risk - this is a no-brainer. Just call the doctor.
posted by something something at 3:21 PM on September 20, 2016 [12 favorites]

Yeah, you've got to tell the doctor. I 100% sympathize with your mom wanting to get home (each time I'm in the hospital I would literally cut a bitch to escape by the end), but you need to let her doctor make the call with all the facts in place.
posted by MsMolly at 3:32 PM on September 20, 2016

Call the doctor and tell the doctor everything accurately. Let the doctor tell her no. This is extremely dangerous in her current state. She shouldn't go back to that house until the condition has been fixed by professionals. Even off the drugs, she's in a weakened state and this is nothing to mess around with. Fix the bathroom as well. A HEPA purifier is certainly not even close to enough.
posted by quince at 3:35 PM on September 20, 2016 [2 favorites]

Seconding not to risk your mother's health and life because she's asked you to keep something quiet and you don't want her to be mad at you. If it's an established pattern of hers to avoid difficult subjects/downplay risk to minimise hassle or fuss and you've been complicit before, this is a strong and important catalyst for challenging that habit.
posted by terretu at 3:40 PM on September 20, 2016 [1 favorite]

In my opinion, if we don't have professional work done then she should stay at her Mom's house until she's off the immunosuppressant (about 80 more days),

I think if it is not professionally addressed, she shouldn't return at all. Mold can sometimes kill even normal healthy people. It is just one of the most awful things.

Please, do some research and make some calls and find some means to address this. See if you can find some organization that will help with this based on her recent medical treatment.
posted by Michele in California at 4:29 PM on September 20, 2016 [1 favorite]

Tell the doctor. Even if your Mom believes she is thinking clearly, she isn't. Tell the Doc about the mold AND that she thinks she will be just fine with a HEPA filter. Let her medical team clear that up for her.
It's obvious to you and me that she would never risk having to land right back in the hospital for an even longer stay and reduced chances of a positve result because she was allowed to come home to a mold infected house when the doctor told her SPECIFICALLY to avoid MOLD. If she were thinking clearly, which one just isn't after the trauma, drugs and lack of uninterupted sleep during a hospital stay, she would know better. That's our story and were sticking to it. Not worth the risk.
posted by BoscosMom at 4:31 PM on September 20, 2016 [3 favorites]

Just a thought here: if mold is specifically dangerous to her health, perhaps eradication of the mold can be covered by her health care insurance, according to doctor's specifications. That way the doctor becomes part of solving the problem, practically and financially.
posted by effluvia at 4:54 PM on September 20, 2016 [2 favorites]

I am a pharmacist in a hospital that does stem-cell transplants. I am by no means an expert but I do know people who are experts so I texted your question to my friend at Mass General (which, BTW, is rated the best oncology hospital in the US).

Her answer is that if your Mom had an allogenic transplant (stem cells from a donor) then she absolutely CANNOT come home until the mold is properly remediated. If she had an autologous transplant (her own stem cells) then its probably OK to come home once her blood counts return to normal.

So, you must talk to the doctor about this on your next visit. You have no choice. You mom may be mad at you but a fungal infection in an immunocomprimised patient is at best difficult to treat and at worst fatal.
posted by codex99 at 4:56 PM on September 20, 2016 [11 favorites]

My mother had AML (and died of a fungal lung infection), but was at one stage on track to get a bone marrow transplant, although that's not what ended up happening. The house she lived in at the time had some roof problems, which resulted in leaking, and some trees out the back that dropped leaves, leading to a litter of decomposing leaves lying around all the time. Mum ended up selling the house because it didn't seem like it would be possible for her to live there safely after a bone marrow transplant.

I'm sure you've been told some scary stats about the procedure, but just to reiterate, it is absolutely possible to die from an infection after a bone marrow transplant, and I'm sorry to say it's more than a remote possibility, even doing everything you can to prevent it. Going through a procedure as extensive and gruelling as this only to sabotage yourself in recovery seems like a strange move. I'm sure your mother is desperate and not thinking clearly, but I certainly would not play along with what she is trying to do.

I'm sorry you're in this situation; it must be hard to feel sure that you're doing the right thing, particularly when you've probably relied on your Mom's good judgement for substantial parts of your life. I hope she can come to understand that what she is trying to do is a bad idea.
posted by Cheese Monster at 12:13 AM on September 21, 2016 [1 favorite]

I am a former stem cell transplant coordinator. You are correct to keep your mother out of that house.
Mold is not a theoretical problem. It is real and it is dangerous. Please go ahead and enlist the help of her doctor to keep her safe at someone else's house until the mold is professionally remediated.
BTW, she may end up on immunosuppressants for much longer than 90 days so please don't start a count down calendar or hold out 90 days as a big goal. And even once she is off the immunosuppressants, her immune system will nor be back to normal. That may take up to a year. Her doctor -- who has seen too many of his/her patients die of aspergillosis and mucormycosis -- will likely never give permission for her to move into a moldy house.
It is a tough situation; I am sorry. Please take care of yourself, too.
posted by SLC Mom at 8:13 AM on September 21, 2016 [1 favorite]

This doesn't directly answer your question but if you're looking for ways to discuss this with your mother, how about this:

"Mom, you're an adult and you're allowed to make your own decisions about your life and your health. That means if you want to move home after this procedure despite the fact that it might kill you, it's your choice. But I'm really wondering - if you don't mind taking a serious risk that you might die, why are you bothering to go through an incredibly invasive, expensive and difficult procedure like a stem cell transplant? The cost and difficulty of dealing with this mold situation are nothing compared to the cost of getting a stem cell transplant - so why go through all that and then do something to throw it all away immediately thereafter?"

Maybe "your doctor says you can't" is easier, but it seems like the approach of "I care about you and I just want to understand why you would consider this" would respect her autonomy more. She must be feeling very powerless and at the mercy of a disease and the healthcare system right now. She might believe that she is likely to die anyway and not want to spend her final days away from home. There might be some thing you could discuss about how to respect some wishes she has about how she wants to live her life during this time that would help her feel autonomy but not be such a potential risk to her health - having an open conversation about this could help get at those deeper issues. (fwiw I am a doctor and I certainly wouldn't want my mom to do this either)
posted by treehorn+bunny at 10:41 PM on September 21, 2016 [1 favorite]

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