Naturally, while yourself or your loved one is preparing to go home after a stem cell or bone marrow transplant you will be speaking with a number of doctors, nurses, social workers and even visiting nurse representatives. While they do their best to prepare you with prescriptions, follow-up appointments, and discharge information, there are many things that they may not even realize you need to be prepare.
Seeing as I have gone through this life-saving and life-altering process, and have often talked to my husband about everything we went through, I want to share advice with you that will help get you even more prepared for the first few months after a stem cell or bone marrow transplant. Although they have a wealth of information and experience, doctors, nurses, and healthcare professionals most likely have not gone through this recovery process, and there is much more to know.
There are many tips that I am have to share so I will first start with the first five that came to mind:
1. Gather a cleaning crew: whether you hire a service to perform this deep clean or ask a group of friends to do this, you need to deep clean your home as has never been done before. Get rid of the clutter that is collecting dust, and disinfect your home as if someone’s life depends on it, because it does. Covid-19 only complicates this as you may want the cleaning crew or friends to wear masks. Open all of your windows while they clean to aid in air circulation as well as clear out the possible chemicals from the cleaning supplies. You truly want to get as many allergens and dirt out of the house as possible. Remember, you are bringing home someone that has absolutely no immune system. Hopefully the deep cleaning can be completed a few days before the stem cell or bone marrow recipient arrives home.
2. Purchase or prepare additional linens: You are going to need additional sets of bedding as you will be told to replace the bedding as frequently as every day. For the post stem cell or bone marrow transplant patient you need to be prepared for is a high level of skin shedding. You need to remember that skin is our largest organ and you will need to keep it, and your bedding clean. I was required to shower, moisturize and have fresh bedding every day for a number of months. There is also another reason you will need extra bedding, but I will share that in a separate post.
3. Purchase a high-quality filter: You will want a high-quality HEPA filtration system for your home. If you have a small home, than one that covers the entire square footage will be good. If you have a larger home, and can only purchases one, then be sure to have the filter located in the room that the patient will be recovering in most of the time after the stem cell or bone marrow transplant.
4. Shower safety: You may want to consider having a safety bar installed in your shower or have a shower seat for the patient. As I mentioned previously, a daily shower is a must and the post-transplant patient will be very weak, so the additional safety items are important. There was a period of weeks where my husband usually needed to be in the shower with me to help support me as I washed. Even after those first few weeks at home, he stayed next to the shower to help me in and out.
5. Around the clock care: After my stem cell transplant, I could never be alone for a number of weeks – doctor’s orders. I needed food, and drink brought to me. I needed help getting to the bathroom, up and down the stairs, cleaning the line in my chest, getting dressed, etc. for the first few weeks after coming home, never mind the numerous weekly trips to the hospital outpatient facility and the weekly visiting nurse. Speaking from personal experience, as well as talking to others who have gone through a stem cell or bone marrow transplant, you feel extreme and utter weakness for a period of time. I cannot imagine how I would have gotten through this without my husband (and friends and my children) who nursed me 24/7 for the first three months post-transplant.
Soon I will post another list of tips but in the meantime, please consider registering and/or sharing the stem cell & bone marrow registry information provided at join.bethematch.org\jennifersmission.
More about Stem Cell Bone Marrow Transplants:
Acute Myeloid Leukemia: The Stem Cell Transplant
Acute Myeloid Leukemia: Thirty Days after Stem Cell Transplant
Jennifer says
Hello Jass – Thank you for sharing that your sister is coming home. I wish her the smoothest of recoveries and a gentle healing.
Jass says
Thanks for sharing, my sister just arrived home last week!