Quote:
Originally Posted by Heather8773
Any advise on things I could/should do or be prepared for after my husbands release from hospital after BMT? Is there any caregivers or PTs that would be willing to "paint a pic " on what day to day will look like when he first gets released?
All replies appreciated!
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Hi Heather, I am 7 months post Mini (non-myeloablative) Unrelated Donor transplant for Aplastic Anemia. So although I know my transplant was different than Ronald's will be, the home protocols will likely be pretty much the same. I would definitely recommend keeping candied ginger, ginger ale, and gingersnaps on hand which sometimes helped my nausea. Some folks also like ginger tea.
I'll focus on the home environment and precautions, since my post transplant experience would likely be different than Ronald's.
GERMS: The most important thing will be to keep Ronald away from germs when possible. This includes anyone with ANY illness symptoms, (colds included). Our friends and family fully understand this and no matter what, we don't see them if any are symptomatic at all. If you have 2 bathrooms where you are living or will be staying, it would be helpful (tho not necessary) if one is fully dedicated for his use for showering, washing up... I did & still do everything hands free outside our home, including door knobs, elevator buttons, restroom stall locks... and frequently wash my hands (for 30 seconds or 2 renditions of the happy birthday song). I even have the medical gloves in the car for shopping carts. These may appear a bit extreme, but at 7 months out I haven't had even a cold, and I am out & about regularly. My husband did have a cold a few months back. He slept in a spare room, used a different bathroom, wore gloves in the kitchen & we completely avoided each other until he was better (I got all my own food during this time).
The reason why I'm still so cautious is I heard a couple of months ago that any illnesses can possibly increase your chance of GVHD because this will ramp up the immune system which isn't preferable within the first year of transplant.
FOOD: Cook foods per transplant guidelines: heating all hot foods and leftovers to 165, cool left overs for no more than 30 minutes before refrigerating in open containers until cold (keeping them uncovered allows the food to cool fairly quickly). The friends who cooked for us had a copy of our clinics food prep guidelines. If I knew anyone who I didn't think could cook to these guidelines, I didn't eat the food they brought over, so let my husband have it & I made something else for myself.
Many fresh vegetables & fruit were not OK for me within the first few months of transplant because of possible bacteria (they had to be cooked).
CLEANING: cleaning the kitchen & keeping dust to an absolute minimum are imperative. (dust can contain microbes which could be harmful to him). Our clinic suggested daily wiping down of kitchen & bathroom counters, door knobs... with a 10 part water to 1 part bleach solution & a weekly cleaning of the refrigerator using the same solution. (My husband was very good about this). The solution was to be made fresh daily as the concentration lowers after 24 hours-so he made a fresh spray bottle daily & did a full wipe down before he went to bed each night (keep rubber gloves on hand for yourself as this can really dry out your hands)
EXERCISE: Ronald should move whenever he can. Even moderate exercise will help with his healing and strength. He will be very tired tho, so may need to sleep a lot the first few months
GARDENING: None for 1 year after transplant (longer if still on immunosuppression). Dirt has microbes which aren't good for transplant patients to be exposed to
PETS: If you have any pets, he should not pet them or hold them the first few months post transplant (pre too if you have cats)/
We live near Seattle, so my transplant was @ SCCA which is part of Fred Hutchinson. SCCA has required pre and post transplant training classes for transplant patients & their caregivers in Nutrition (which includes food prep)Home Care, & Line Care (for the central line). Does your clinic offer similar classes or training? These really helped prepare us for what to expect and how to care for transplant patients at home.
Lastly, try and keep your sense of humor, find funny things to read or watch on TV or you tube. A healthy sense of humor really does help.
I am doing really well, my labs are all normal now and I feel great. What a difference from pre-transplant when I required weekly transfusions...
If you have any questions, feel free to send me a message in MarrowForums as I don't always keep up with the different message strings
Best wishes to you & Ronald.