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DiscussionCan anything prevent peripheral neuropathy after stem cell transplant?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 6 days ago | Replies (19)Comment receiving replies
Lori helped me just like you. Bring the things she suggested. In hindsight you will not believe these 100 days were all managed and you are alive and thriving because you faced each day as it unfolded.
I had great plugs behind my bed, so my phone charger and device chargers were handy. I used much of the items she suggested at my caregiver's house later. I will say i was in the hospital nearly 28 days. I did not wear my own top. I am not large busted and i have barbie boobs. I wore the new gown they gave me daily and never a bra. I wore my own lounge pants. I had a lot of them. I had flower adorned caps for my bald head through headcovers.com. I had them from when i lost my hair through breast cancer. Out of the box at home they came. I wore them every day. I had a number of them. My brother picked up my laundry to wash my undie and lounge pants. Socks- they want nonskid ones. The floors are cleaned daily, so you can wear slippers or house shoes. I wore hospital socks and mixed with slippers.
I had one big suitcase and another small. I had lots of undies. Because I was hooked up to an IV with all sorts of drugs every single day, unless i had shirts with buttons or zippers, wearing different shirts just did not work for me. I had brought my own blanket, but again, the sheets are washed daily along with the blanket. Germs.
I did not read my books. I did have a bunch of magazines i read. After the transplant and about 2 weeks after transplant, I opened my computer. I did not bring my tablet. TV. I watched more daytime talk shows and the link then i had in years. Movies and so much more.
Toiletries- In the hospital you cannot use your toothbrush. I had a soft kid kind of one, with toothpaste, but i also was given biotin i swished with 5 or 6 times a day. Protecting our tender gums after conditioning and chemo. A shower every single day with a medicated soap. Staying in the hospital has routine. Learning to shower with a plastic cover for my Picc line so i could shower with it covered and then taking my iv pole too next to me in the shower. I named it my little sister. It goes everywhere we go. It is your buddy. Trips to the bathroom are often.
Daily you have the aid who changes your sheets and gets you fresh towels. Helps put the plastic picc line cover on and take it off. Our floor had mostly males. Very kind and careful . There is also the cleaner. Ours on Floor 6 has been doing this for 25 years. She was kind, quiet and thorough. No dust in the room. MY OWN ROOM!! Floors, restroom, shower, toilet, sink. Noone touched my stuff, they cleaned around it. I had a nightstand for stuff and a TV cabinet with drawers for my clothes and undies. I had my own snacks too.
FOOD- They want you to eat. They encourage fluid along with your everyday IV. The hospital food was very good. The chemo day, transplant day and research chemo day had me nauseated. It was only a day or so. I ate crackers, but these 7 days or so sleep was my friend and the fool TV and some foods i had like graham crackers to snack on. I finally got help for my vomiting when i did it at the 8am dr tour. I could not stop it while they visited. Soon after I got a med called Emend. A 72-hour pill that stopped this nausea and it worked to stop my body. What a relief. Regular nausea meds did not work with the melphalan chemo. In the hospital, you can get the help you request for anything that happens. Our RNS had4 or 5 patients per shift. Doctors do not like to see their patients uncontrollably throwing up. There is no faking there.
Not sure which device you will have. There is a picc line in your arm, the Hickman line that goes on your chest. I had a port for Breast cancer treatment and a picc line put in for the transplant.
The comfort of the routine is the nurses who follow it. I rotated a number of the same nurses for the day and overnight shifts. I loved talking to them as they comforted me each day as my numbers were posted in the morning. Told me i was doing well. Always asked how i was feeling. Every day round 8:00am the doctor team visited each of us. Gave us a body check looking to see about fever, BP, heart rate and blood tests of the morning. Consistency, it was never my Hematology dr. but the doctors assigned did 2-week rounds. They got to know us. Later i found they would give my Dr. updates. My Dr. told me they really enjoyed coming to see me.
It is a whole lot of daily updates, blood taken every 4 hours. I was on floor 6 at City of Hope. We were encouraged to take our IV poles and walk around the floor every day. You cannot go outside there, but there is an area overlooking the mountains by the elevators where they had art days and greet the animal's day. I tried a very day to go walk the halls. By doing it, i met a number of patients which I loved. There were 36 beds on that floor that always have someone in them. We have been given a lifesaving gift that we can only repay our donor by given it all we have to recover and thrive. On Floor 6 it is a transplant floor.
Leaving through the front doors of the hospital my final day i stood outside and just stood there breathing and smelling life in session. People, vehicles exhaust, flowers and all. I then went to spent 75 days at my care givers house.
A DAY At A TIME!!!!!
Replies to "Lori helped me just like you. Bring the things she suggested. In hindsight you will not..."
Hi again - a quick question regarding shirts for long hospital stays with central line and Ivs. I was planning on mostly short sleeved tshirts so they could get to central line easily but are you saying button or dipper fronts are better for easier access ? I couldn’t visualize how button down might be better than a plain tshirt. But I want to bring what works best. Thank you.