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JAK2 Mutation - Effects and Questions

Blood Cancers & Disorders | Last Active: Jun 19 5:59am | Replies (303)

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@loribmt

Daunting is the appropriate word, for sure. Trying to imagine packing up and living somewhere else for over 3 months is intimidating when you don’t know the area or what your husband will be facing. That’s why I’m here and there are others in the forum who have also had this journey,
From my personal experience we chose the Marriott Residence Inn. 441 W Center. It’s not a 5 star hotel but it is clean, comfortable and very convenient to accessing the clinic on a daily basis. Your husband will require daily trips to the clinic and parking is a challenge. Being connected via the tunnel system allows you stress free rides down the elevator to the ‘subway’ for walking or using a wheel chair to the clinic.
As mentioned most of his treatment will be as outpatient however, there may be some unexpected trips to the hospital in the middle of the night and it’s a simple wheelchair walk from the hotel to the clinic, all inside, well lighted and safe. Wheel chairs are available everywhere inside the clinic and can be used for the length of your stay there, taking back to the hotel if needed. I’m not trying to frighten you, but the initial stage of the transplant can leave the patient pretty weak, so even walking a block to the hotel would be an effort. I had to use one for a few days too, as did most of my fellow transplant buddies who I got to know while there.
The Residence Inn has suites. We rented a 2 bed/2bath suite. It has a full kitchen with full sized refrigerator/range with oven, microwave, dishwasher, garbage disposal. It even has a fireplace. Easy to set up a homey nest.
If you rent there or any place in Rochester, ask for a month to month lease. It will save you a lot of $$ by not having to pay county room tax. Insurance generally offers a room allowance to defray the cost of lodging. It is convenient being able to bring your dog. ☺️ It’s in a nice neighborhood with lots of sidewalks and walking trails through parks and along creeks and rivers. My husband was never idle while I was preoccupied with recovery. ☺️

When you get to that point of securing a room, I have a list of items to consider bringing along to make the stay more comfortable. After all it is your home away from home for several months.
Do you have a timeframe for this?

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Replies to "Daunting is the appropriate word, for sure. Trying to imagine packing up and living somewhere else..."

We will know the timeframe at the end of April. At that time they will determine if they will do a splenectomy or will be able to proceed with BMT in the near future. I can’t tell you how much your communication is helping us. Thank you.