JAK2 Mutation - Effects and Questions

Good morning, @lag630 I know from experience this is an unsettled time for you and your husband. Not the way you’d expected to be enjoying retirement, right? My husband and I went through the same scenario. Life was going along just fine and then, out of the blue, I developed AML (acute myeloid leukemia) 3 years ago. As my only option for a future I required an allogenic (unrelated donor) bone marrow transplant which has, indeed, been a life saver! I see your husband will also require a new immune system to put things right. I will admit it’s no walk on the beach but it is doable and one heck of an experience! And a means to giving your husband a second chance at life. ☺️

It is a complex undertaking so it’s best to have this procedure and follow ups done at a hospital/clinic which specializes in bone marrow transplants.
Are you living near a large hospital that specializes in this procedure?

Thank you and you are correct!

Good Morning! It’s nice to have someone who has gone through this. Yes, we will have to move to Rochester, MN and are getting care at Mayo Clinic. Fortunately we are only a couple hours away, however will have to move there for the daily check ups post BMT for at least 100 days.

Oh, that’s the greatest news! Mayo-Rochester is my home away from home and your husband can not be in better hands there! I’m intimately familiar with the transplant program and process there so please feel free to use me as a sounding board.
My husband and I made our move to Rochester as well for the duration of the transplant. We stayed at the Marriott Residence Inn which is linked to the ‘subway’ system to the Clinic. While the procedure is basically done as outpatient, requiring only a brief few days in the Methodist hospital on campus, he will be required to return daily for bloodwork and infusions. So you’ll want some place very convenient. Do you have any questions about lodging for your stay?

Hello and thank you! Yes I’ve recently been checking on places to stay. I was leaning towards Viola Suites, 2.7 mi from clinic, apt style, and pet friendly ( 9 yr old lab). However, I like your suggestion to stay as close as possible to the clinic. It will help alleviate the stress of getting care in the most timely fashion. Marriot is also pet friendly. Yes I will be reaching out to you with questions as we try to navigate this process. Any suggestions are greatly appreciated. This is just so daunting, as you know.

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?

Colleen, thank you for asking. Very fortunate that all my other blood work is within acceptable ranges. So the doctor will continue to monitor platelet levels every three months. The doctor was encouraging in that I have been living with these levels for almost six years and have not developed any other problems along with other normal blood work. Bone marrow biopsy in 2017 was normal so he is not going to repeat that at this time. He said the Jak2 positive explains the why. In the most recent blood work the platelets had come down to 633. Staying hopeful. I can tell from these feed that others are experiencing more severe issues. I wish good future health for everyone.

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.

It’s my pleasure to help you in any way I can. I wished I’d had a mentor to help me navigate the transplant world. My doctors and all the staff at Mayo were absolutely the most caring and attentive people I’ve ever met. But they haven’t actually been on the receiving end of the experience. So it’s my goal to help anyone going through this process, to let them know there is hope on the other side and that it’s worthwhile for a second chance at life. I’m 68 and coming up on 3 years post allogenic transplant and feel fabulous! In fact I feel younger than I have in years! So I do my best to offer that same level of hope to others.

I know you’ll have a ton of questions. So don’t hesitate to reach out and ask! Will you let me know what you find out?

I certainly will.
Thank you