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Old Sun Nov 3, 2013, 02:09 PM
Susan L Susan L is offline
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Join Date: Jun 2010
Location: Ga
Posts: 245
Tii

Quote:
Originally Posted by Tii View Post
I had my dad move in with me and be my caregiver after I got back home from the hospital. He had the Merry Maids-cleaning service come and clean the place, he had the carpets washed professionally and he cleared some counter space for the 14 different medications I came home with. The home nurse brought 2 boxes of supplies as well. (Dad ended up staying for 5 mo!!)

You want to change bed sheets every few days, change his towel every day, maintain a germ free environment by using lysol spray and the antibacterial wipes and gels.

Eating and drinking enough was the hardest part since now it was really up to you to figure out what was going to be healthy and tasteful. Which water bottle brands were on the authorized list. But if it was a half a can of pineapple or a slice of rye bread that appealed to me, then that's what I got, as long as I ate something every now and then, dad was happy. The liquid nutritional drinks from CVS or pharmacy were a good source of vitamins and minerals.

Car rides were fun, because I couldn't be in the general public, but this way you kind of got out of the house a bit to get fresh air. Also one or two block walks, covered with long sleeves, scarves, hats, mittens, masks felt like a overwhelming task, but very important to do during early morning or after the sunset. And it is not so you wouldn't be sunburn, but the BMT could fail.

It was bit challenging when dad got sick with a head cold and fever. We had to maintain long distance from each other in the same house, yet I still needed his help occasionally with the port dressing or with driving to the clinic. That forced me to cook for myself.

Go with the flow, keep a daily log with daily temperature, blood pressure and weight on a bathroom scale. Do not hesitate to call the on call doctor for any symptoms that happens. They are your doctor and get paid big money, no shame on asking a question. Really not much happens after discharge other than doctors appointments, bunch of laying around and napping. And washing hands.

I wish you all the best!

Tii - 37 yrs old, MDS (11 mo post BMT)
Hi - Just a question - did you work before the transplant? If so - are you back at work now or going back?
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Susan Patient, 58, MDS, UPDATED 9/13
Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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