(Guest Lecture): January 2023 - Preparing Your Home Post Stem Cell Transplant

Today's topic is preparing your home post stem cell transplant. Now it seems a little silly that we would have a whole session dedicated to this, but it is so important post stem cell transplant that you understand that there's different advice given. Sometimes if you get two opinions, they're going to be conflicting. So let's hear real experiences of people that have been through this, what worked for them, and also it can help kind of make sense of that different opinions that are getting thrown at you. It's so important post stem cell transplant to avoid infection. So everything that we're going to discuss today is about how you can prevent infection from occurring in somebody that has a very low to non-existent immune system. Now Mary and Rick might have different experiences than you had. We'd love to hear your experiences or you might have remaining questions after their presentation is done, so hold on to those and make sure that you ask them. Mary is one of our panelists today and she lives with her husband Michael, who is also a health tree coach along with Mary and her adult son Raymond, who is also one of her caregivers, and their two dogs, Stella and Jake. She has lived in the Pacific Northwest region since 1986. She was diagnosed with stage 2 IgG Lambda standard risk in November of 2015 and placed on immediate disability due to severe spinal fractures and compression, severe pain, and limited mobility. Like many others prior to diagnosis, she had experienced years of bizarre blood results and chronic back pain that had become so increasingly debilitating. Mary had a stem cell trans harvest, in 2016, and then a stem cell transplant in 2019. Currently her blood work shows standard risk multiple myeloma. Her MRD, or minimal residual disease, and if you're not familiar with that term that's okay, is positive with five parts per million, so that's not very high. Since 2015, she has had two relapses and has become refractory, which means that those treatments no longer work to two different treatments. Presently her maintenance treatment since May 2022 is KPD, which is Kyprolis, Pomalidomide, and dexamethasone, at three weeks on and one week off. Mary is in a good response with this treatment and helps to be able to hold these results for a long time, and we hope that as well. Her pain is managed by a dedicated pain team who work closely with her to maintain quality of life. Rick's myeloma journey began with severe back pain. That led to an MRI, which found the cause to be a fractured lumbar vertebra, which is common for myeloma patients. It also discovered lytic bone lesions. More tests gave a diagnosis of multiple myeloma, and that was the end of January 2020. Through his son, who has many oncologist clients, he got the recommendation of an awesome oncologist in Denver at the Colorado Blood Cancer Institute. His initial treatment began with a cocktail of drugs, some of which he tolerated better than others, and after five months in July 2020, he had his stem cell transplant. Since then, he's been on a maintenance regimen of Darzalex Faspro, which was initially quite effective. However, after two years of this treatment, his numbers started going in the wrong direction, so the next step in his journey was to pair it to a tumor map with Venetoclax. So these are two wonderful speakers who are going to share their experiences with you, like I said, and I know that you're going to learn something today. They took a lot of time in preparing this content, so I'm excited to hear from them. With that being said, Mary, we'll start with your portion of the presentation, and we look forward to hearing from you. Thank you, Audrey. Thank you, and welcome, everybody. When I was asked to do this presentation, I stepped back a bit and went to the SCT shopping list, and I decided to break it into two parts, outpatients and inpatients. Basically, the reason for that is timing and timeline. An inpatient, you're typically considered an inpatient if you have a serious medical issue that needs to be monitored, and you'll find yourself in the hospital probably, or maybe at least up to 15 days, depending on how well your harvest goes and how well your grafting goes. It could be less. It could be more, depending on your numbers. An outpatient, you're typically in the hospital for chemo delivery only, known as conditioning, and this could take two to four days. Then you're soft released so that you're traveling back and forth to the clinic. On slide two, we're going to talk about the outpatient, and one thing out and inpatient have in common is you have time. You have about a month prior to the actual walking into the clinic for your conditioning. You're going to be getting a lot of testing, testing you didn't even know existed. For about a month, and it's going to take up a lot of your time, so use that time away from your home to prepare your house and get your stem cell transplant team on board and start to prep your home about one month before you're scheduled for your SCT. Be mindful you should not be around chemicals or kicked up dust. You don't need to get sick before you go in for your stem cell transplant process. You want to deep clean your living areas only. If you don't live in the attic, don't clean the attic. Deep clean your carpets, and that's more than just a good vacuum. That is getting down into the carpets and doing a wet clean and making sure it's completely dried and all the furniture is put back into place. Make sure your vacuum cleaners and HEPA filters are also cleaned and taken care of. Clean your bed sheets and have them ready for fast change-outs. I recommend that you, and this is going to sound like why would I go out and buy seven different sheets, having those sheets ready for the change so you don't have to think about it. Get yourself seven sheets ready to change out because in the middle of the night suddenly you have this onset of hot flashes and sweating and you want to get up and change your bed clothing and you want to change your bed sheets. You don't want to be laying in wet towels and sheets and so forth. You want to stock your fridge with foods that you're permitted to eat and this takes some thought. So your caregivers don't quite get it why you can't eat vegetables or certain meats and how you're supposed to prepare food. So give them a helping hand and have those things prepped beforehand and have them ready to grab and go in your fridge. Assign tasks that you're not permitted to carry out while you're in recovery. Now this is where you get people to do the dirty work. Changing the litter box, doggy poop patrol, cleaning the bathrooms that you're using. Don't go and clean your son's bathroom if you don't need to. Trust me you don't want to. Cleaning the main room that you're living in and sleeping and enjoying recovery and doing your laundry and making sure you have enough towels and washcloths ready for you at the change out so you don't have to wait for laundry to be done. On slide three we're talking about the inpatient and you want to follow the steps above to think about that deep cleaning and when you're out of the house one month before your stem cell transplant and you still want to think about things along the way. So you have your caregivers thinking ahead, changing the litter box, who's going to be in charge of those doggy patrols and will they stick around after the 30 days are up and making sure that those laundries and I really found value in the change out of the sheets. I had about two or three night shirts that were available to me and I got special night shirts that were wicking that kept the moisture away from my body and making sure that I had enough changes, sheet changes for the bed. And I can't emphasize more what I talked about earlier and I'll hand this over to Rick is taking the time now to prep prior to you walk in for your stem cell transplant because once you're deep into it you don't think of these things. You've got a lot of things on your mind. Healing is the major priority. So take your time now, look over your list, talk to your caregivers and they are the final say. Rick and I can tell you what we went through but your care, your team, your oncology team, your stem cell transplant team actually, they are the ones you go to for the final say on what you can and cannot do. Thanks Audrey. Rick you're up. Okay, you know to the point that Audrey made earlier about getting multiple opinions, it's very likely that if you ask a couple oncologists for their opinion about something, you're going to get three or four answers because they just they can't make up their minds. So be prepared for that. Let's go ahead to the first slide. I think that one's just about, no you took that up good. Diagnosed in 2020, we let's skip this one because we've talked about it. HVAC, you're heating, air conditioning, you got to have it most of the year. So make sure that it's clean. Get the filters replaced, have the ducts cleaned and understand humidifiers are not allowed because water is necessary for life but it also is good for life of things like bacteria and mold and that stuff can make you really sick. Yes, if you are, if it's in the winter and you don't have a humidifier going, you may have to live with a lot of static electricity but it's better than the alternative. In my case, if we go on to the next slide, our house was being cooled with a swamp cooler up till then, an evaporative cooler and for people in most of the country, this is an unknown and it's counterintuitive but you cool the house by putting humidity in but it's cool air that is being put in but again, these swamp coolers hold a pan of water that gets pumped over this pad and so mold and bacteria can live in there so you want to have that drain. In my case, what I did was I went out, it can get kind of hot here in Colorado, so I went out and I bought three air conditioners. I couldn't use window air conditioners because of the type windows we have so instead I got floor mounts and vented them still through the window. So moving on, wood burning. Unfortunately, can't do it. Wood carries fungus. Last weekend, I was cleaning up some wood that I use for smoking meat and this wood had been sitting in chunks in a landscaping tub and I was surprised how much of that wood had mold on it so don't do it. Again, just by in handling it, you can inhale the fungus, the spores. If it's your only source of heat, have a caregiver handle the wood and tend the fire. So next one, clean house. Mary's touched on this but we can't emphasize it enough. Have your carpet professionally cleaned, just vacuum it, isn't enough and the patient should not be present when the cleaning is done. Any room that you will use should be deep cleaned prior to your return. Don't overlook ceiling fans. We have a few of them in our house and I had to get up and change some light bulbs in the ceiling next to where there was a ceiling fan and I was shocked how much dust there was on top of that thing. Use antibacterial products and any hard surfaces in areas that you will use. Again, like Mary said, you don't have to do this everywhere. You know, you don't have to go up and wipe down the attic but any places that you're going to be in, make sure they're really clean and after the initial deep clean, vacuum and clean weekly. Have it done, not you doing it, especially the kitchen and the bathroom. The bathroom particularly holds moisture and moisture fosters the growth of mold. So down pillows and comforters, stuff like that. This one, opinions vary but less than two years old, they should be cleaned prior to transplant and have an impermeable covering and to me once you put that covering up, I don't want to be sleeping on that so it's up to you. All your bedding, regardless of what kind it is, needs to be clean and your care team will let you know when this restriction can be dropped. And once again, they're going to have different views on it. Indoor plants, they can harbor mold and bacteria and so you got to stay away from them. In my case, it was in the summer when I had my transplant so the plants, most of the plants went out on our deck and my wife was able to give them the tender loving care that they were used to out there. Her orchids, I just stayed away from them and if it's not possible to put them outside, at least put them somewhere that you aren't going to be hanging out. You know, don't put them next to the chair, you're going to be sitting in while you watch TV. Cut flowers, same problem, both the flowers and the water that they're sitting in and if you have artificial plants, you've got to dust them at a minimum. It's kind of, you know, a repetitious theme here but it is important. Let's go to the next one. So no yard work, period. No gardening, no digging in the dirt, no weeding, no leaf blowing, none of that stuff because you've got all these little microorganisms that make for healthy dirt that also can make you very unhealthy. So the only way you're going to avoid them is by not doing it and you also have the chance of contracting tetanus through cuts and scratches. When you get to the when you come home from transplant, you're not going to have any immunities to anything. They will wipe out, in the transplant process, they will wipe out all of those resistances that have been built up over your life, whether through infection or through vaccination and so you're just highly vulnerable to anything. And I guess we can move on to the next one. Basements and crawl spaces. I grew up in western New York, about two blocks from the Allegheny River. My grandparents were across the street from the Allegheny River. That smell of damp, musty basements still is in my memory. You know, it's just part of that moisture thing. So if you're in the basement, you're in the basement, you're in the basement, you're in the basement, you're in the basement, you're in the basement. So if the basements or crawl spaces are damp, musty, you have mold that's obvious, water seepage, if they have a dirt floor or if they have a stone foundation. I grew up with all of these things. If you need to have a sump pump or a dehumidifier in the basement one, stay out and if you do have a sump pump or a dehumidifier, your caregiver is going to have to be the person who has to service it, not you. All right, next one. Water and sewer. You can't count on domestic water being safe. You know, there was a woman in the Seattle area, I think it was in actually in the city of Seattle, who died from using a neti pot and using domestic city water in it and she got a brain infection and died. So check with your caregiver, not caregiver, your oncologist's office about using the municipal water and what your alternatives are if you can't. If you're on a well, the water should be tested. And I highly recommend having your sewer line cleaned or if you're on septic, get it pumped out before transplant. You don't want a backup. We had that a few days after I came home and when I told one of our sons about it, he said, you got to go to a hotel. That's all there is. You got to go. He said, you don't want fecal pneumonia, which is pretty true. And also as myeloma patients, we are particularly susceptible to respiratory infections. We're at much higher risk for that. So that's all on this one. I will say that sometime this morning, probably in the next half an hour, there's a guy supposed to show up and clean our sewer line. We learned our lesson. So next slide, please. Water features, ponds, waterfalls, fountains, even aquariums. Again, it's places that harbor water which harbor critters. Whether you think of insects, bacteria, mold, lichen, they harbor life. And also they attract wildlife if it's outside. And the wildlife, they have their own biome that they carry around with them and they're shedding or dropping whatever. The top picture, their bobcats, they might decide to catch a bird or a rabbit and leave part of it behind. That creates problems. They also can create aerosols. You can inhale the stuff and there you go. So either drain them or stay away. I would go out, we have a pond in our yard with bobcats, and my wife would do the tasks that need it done and I would stay back a ways wearing a face mask. So that's one way to do it. Next one. Our friendly family, furry family. Fortunately for us, when I had my transplant, we were finally dogless, petless, but they can be a source of problems. So either your caregiver has to take over or you have to send them on vacation. Vacation could be just have them stay with a friend for the duration until you're safe to be around them again. Or the caregiver takes over and cleans the littered box, picks up after the dog, even feeds the dog. Rick, if I might add, I think that's a good point. I think that's a good point. I think that's a good point. Rick, if I might. Yep, please. I have two dogs and I was told as long as they don't sleep near my head or give face kisses. So we had those rules. So the dogs were allowed to sleep and stay with me on my bed during the day and that night they went into their own bed to sleep at night so that I had more room in the evening in my bed. And then I just assigned the poop control and making sure that the dogs were cleaned to somebody else. I also made sure that my dogs went to see the vet about a month prior to my stem cell transplant so that they had any vaccines that they needed or any checkups that needed done. All that was taken care of and I didn't have to worry about it for the next six months. But I was told no new pets to the pack and to be careful of scratches. I don't know if you ever heard of cat scratch fever. That's real and dogs are no better. So I've occasionally gotten scratched by my dog by an accident and it's a wound that doesn't heal when you have a low immune system. So you have to be really careful with that. But I didn't re-home my dogs. I know people who have done that mainly because it's such an arduous process that worrying about taking care of your dogs or your cats or your fish is one last thing you need to worry about. So think about that and how much time your pets take but also what value your pets give to in recovery. Yeah well also you had something about cats didn't you that you wanted to say? Oh well cats like dogs. We have to be careful with kitty litter, bloodborne pathogens. Do not handle the kitty litter. That's you know if you're used to that it's easier said than done but you have to step away from the kitty litter for about 30 days almost up to 100 days. And it does go fast. You might want to get one of those litter boxes that's self-clean so you're not touching the kitty litter. But you have to be really careful around fecal manner of all kinds from all animals. So and fish you know hanging out with fish and fish tanks that's another one. So you just got to think ahead of the process and just making sure that you're being smart about handling no new kittens, no new puppies, no new fish, no new plants. I mean everything has to stay the same in your house for the next 30 to 100 days. And speaking of fish I was told that I could go fishing but I couldn't handle the fish. That's a little tricky. Take pictures of fish. A child again have you know with an adult taking fishing. There are rules and there are rules also for those who have stem cell transplants and then there's gosh help me Audrey there's a different type of transplant that happens where they're more intense. Oh we're talking about ASCTs. Okay so we're not going to get into that but there's the other transplant where yeah it's a lot more hard on people. So it's thinking ahead of the game. Thanks Rick. Thank you. So I think that's it for my part of the presentation and I guess we'll open it up for questions. Audrey I wanted to talk I wrote some notes down on the HVAC system. What I do with my heating and cooling system is I have a schedule set and the easiest way for you to remember is that I have three adults in the house and of course the dogs too and I have to decide if I want to pull them in on this. But on their birthdays are the days that I clean the filters from the furnace and what I do is I empty out my dishwasher and then I just lay my metal filters in the dishwasher and I clean all my filters and my screens in my dishwasher on everybody's birthday. So that's how I remember when to clean the filters. And the other thing that I always have around I still do I carry masks, hand sanitizers are everywhere and gloves are everywhere. So people just don't have to think about it should I or shouldn't I just say yeah glove up just just be safe be cautious. So and if people don't want to glove up they can decide to visit another time. And also with plants I was told no fresh flowers. That's all the notes I have. Yep awesome thank you so much.