My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Hi!
Thank you😊. The good news is that there are 2 persons who are unrelated
100% match!

He should be discharged in a day or two and I’ll receive training for
recovery at home. Recovery has gone well thus far in the hospital.

I know the time will go quickly before we move back to Rochester…. A pretty
nice place to live if you have to relocate short term. I appreciate your
help with all of this and I’ll be sure to check out the Thursday night
events😊

Good morning! You and your husband have been on my mind the past couple of days and up you pop! It’s a relief to hear he’s already had the surgery. Things are moving quickly!

It sounds like you’ve found a real gem to live in for the summer and are settling in nicely. I agree, your landlord sounds incredibly accommodating! What a lucky find! How’s your little dog adapting to the new life? Lots of new places to walk and sniff. ☺️

It’s good to hear you’re out exploring Rochester. It really is a wonderful city. My husband spent hours walking around the neighborhoods and the trails along Bear Creek and the river.
He’d tell me about all the wildlife and interesting spots he found. Finally, when I got strong enough I was able to join my husband for some shorter walks to see what he was talking about. Now, when we go to Rochester for my checkups, we both head out for an hour or two on the familiar trails. Rochester is our home away from home. ☺️

As your husband recovers from his surgery, there is a really fun event held every Thursday downtown you both might be enjoy. Vendors, food, music. It’s downtown near the Peace Plaza. https://www.downtownrochestermn.com/events/thursdaysdowntown

Wishing your husband a speedy recovery this week. ☺️
How’s the search for a stem cell donor coming along?

He has a positive attitude, which is great. I checked with property manager about the drapes and they said they would replace all with blinds. Best. Landlord. Ever!
My husband just had a splenectomy Friday to prepare for BMT. He’s up walking a bit yesterday and working on getting pain under control. They figure a 6 week recovery period pre BMT. While he is recovering in the hospital, I’ve been able to walk around the area to get my bearings. Very nice community.

Good morning. I know there’s a lot of information being tossed your way in preparation for your upcoming stay in Rochester. My husband and I went through the same thing. The logistics seemed a bit daunting. But it all works out. ☺️ Now, it’s our home away from home and we’re always eager to return for follow up appointments. It’s like coming home!

@gingerw brought brought up more points, such as the airing of the drapes and vacuuming again. Just make sure your husband is not in the same room when you’re doing that and that he is fully masked.
The mindset for you and your husband during transplant recovery has to be, in a word, Germaphobic. His immune system will be very compromised so he’ll need to avoid exposure to dusts, dirt, plants, soil etc.
I wanted to add, cover the sofa or wherever he’ll be sitting with a clean sheet. You don’t know who’s been on that sofa before or what illness they had.
Again, I’m not trying to overwhelm you, just getting you prepared for a little life change for a while.
When I had extended visits to the clinic, my husband would take that opportunity to spray the fabric furniture and drapes in our hotel apartment with Lysol spray.
I’m sure others will add some ideas here for you too. Just jot them down.
You’ll be getting guidance from his transplant team as well. In the meantime, I found a very comprehensive post-transplant guideline from another reputable clinic.
https://www.mskcc.org/pdf/cancer-care/patient-education/leaving-hospital-after-your-allogeneic-transplant
These are very similar to my Mayo guideline pamphlet so this will give you a heads up.
How’s your husband feeling about all of this?

Hi Ginger,
Thank you! I will check with property owner regarding those items. I would’ve never thought of that.

I would add in, to run the vacuum again, when you get there. If there are curtains on the windows, ask if they can be steam cleaned or at least pulled down and shaken out. Ditto for furniture, can it be vacuumed? If the landlords have rented to Mayo patients before, they may already be aware of having to be "squeaky clean"!
Ginger

Good morning! Well, gosh, that’s not the news you wanted with the Jakafi not doing the job. But plan B should get your husband to the point of transplant. ☺️

I’m so happy to hear you found such a nice place to live near the clinic where you can bring your furry baby along! That has to be a huge relief for you. I’m trying to think of other things you might need. My stay was at a hotel so there were a number of extra things I brought along that you won’t need if you have a house.
We drove to Rochester so we weren’t limited with room. Not sure if you’re flying or driving but that might impact what you arrive with.
I’m assuming all the basic amenities are in the house already such as utensils, plates, etc. but bring items that you use on a daily or weekly basis that you won’t have in Rochester at your reach.
Rochester is a nice medium sized city with a lot of grocery stores, restaurants, etc. with delivery!!
So make a list of what you might miss if you’re not home for 3-4 months. Pills for sure, address book, stamps, envelopes, laptops, iPad, phones, chargers, extra prescription glasses. I also tossed in a small extension cord for my hospital stay so I could charge my phone and iPad in my bed.
Bedroom slippers for your husband and pajamas/sweat pants. Something comfortable…trust me. And his own little blanket/throw.
Forward your mail from the post office and sign up for the free service from USPS for previewing your mail so you can see what is being delivered each day if you need to check for bills.
We brought along some favorite food prep knives, some dried herbs/spices from our home so we didn’t have to buy everything new. But there’s a really nice HY-Vee grocery not far from the clinic where you can get everything you need and Fresh Thyme that has really good fish and fresh foods.

You’ll be there from July into the early/later autumn so keep that in mind when packing clothing. Summer is hot and humid in Rochester and then gets chilly in the fall. Raincoats/jackets/caps/hats for trips back and forth to the clinic on nasty days.
If you drive to the clinic daily, you’ll be able to duck into a tunnel system from most parking ramps so that’s out of the elements.

Getting to the nitty gritty. Your husband will be seriously immuno-compromised after the transplant and will need to be in as clean of an environment as possible.

He will have several educational classes before transplant to help guide you both about foods to eat, food prep and handling, and also a safe living environment.
He’ll be wearing a mask all the time for several months! With a dog, he may have to limit petting. But keep sanitizer handy.
When you move in:
Bring sanitizing wipes and hand sanitizer to get you started, then make sure they’re on your shopping list.
What I would suggest, even though the house will no doubt been cleaned, is to disinfect all the horizontal surfaces again, such as doorknobs, remotes, light switches, countertops, refrigerator and microwave door handles, bathroom…

Take all the dishes from the cabinets and put through the dishwasher again so that you know it’s been done.
I brought a supply of our own dish cloths and towels from home. I’m really picky and felt I had a level of control of cleanliness. I also brought our own facial wash cloths.

A suggestion to bring a Brita water pitcher/filters. Rochester’s water is fine, just heavily chlorinated and I didn’t like the taste.

Is this a 1 or 2 bathroom house? If you’re sharing (or not) the bathroom with your husband during his recovery, it needs to be squeaky clean. And he should not be cleaning it at this time. It’s good to purchase a new toilet brush and Clorox bowl cleaner and keep the Lysol wipes handy for touch ups.

Molds and fungus are problematic for newly transplanted patients so make sure the shower curtain is free of mold.

I know I tossed a lot at you on general information.

Do you have any specific questions?

Good morning! Well, gosh, that’s not the news you wanted with the Jakafi not doing the job. But plan B should get your husband to the point of transplant. ☺️

I’m so happy to hear you found such a nice place to live near the clinic where you can bring your furry baby along! That has to be a huge relief for you. I’m trying to think of other things you might need. My stay was at a hotel so there were a number of extra things I brought along that you won’t need if you have a house.
We drove to Rochester so we weren’t limited with room. Not sure if you’re flying or driving but that might impact what you arrive with.
I’m assuming all the basic amenities are in the house already such as utensils, plates, etc. but bring items that you use on a daily or weekly basis that you won’t have in Rochester at your reach.
Rochester is a nice medium sized city with a lot of grocery stores, restaurants, etc. with delivery!!
So make a list of what you might miss if you’re not home for 3-4 months. Pills for sure, address book, stamps, envelopes, laptops, iPad, phones, chargers, extra prescription glasses. I also tossed in a small extension cord for my hospital stay so I could charge my phone and iPad in my bed.
Bedroom slippers for your husband and pajamas/sweat pants. Something comfortable…trust me. And his own little blanket/throw.
Forward your mail from the post office and sign up for the free service from USPS for previewing your mail so you can see what is being delivered each day if you need to check for bills.
We brought along some favorite food prep knives, some dried herbs/spices from our home so we didn’t have to buy everything new. But there’s a really nice HY-Vee grocery not far from the clinic where you can get everything you need and Fresh Thyme that has really good fish and fresh foods.

You’ll be there from July into the early/later autumn so keep that in mind when packing clothing. Summer is hot and humid in Rochester and then gets chilly in the fall. Raincoats/jackets/caps/hats for trips back and forth to the clinic on nasty days.
If you drive to the clinic daily, you’ll be able to duck into a tunnel system from most parking ramps so that’s out of the elements.

Getting to the nitty gritty. Your husband will be seriously immuno-compromised after the transplant and will need to be in as clean of an environment as possible.

He will have several educational classes before transplant to help guide you both about foods to eat, food prep and handling, and also a safe living environment.
He’ll be wearing a mask all the time for several months! With a dog, he may have to limit petting. But keep sanitizer handy.
When you move in:
Bring sanitizing wipes and hand sanitizer to get you started, then make sure they’re on your shopping list.
What I would suggest, even though the house will no doubt been cleaned, is to disinfect all the horizontal surfaces again, such as doorknobs, remotes, light switches, countertops, refrigerator and microwave door handles, bathroom…

Take all the dishes from the cabinets and put through the dishwasher again so that you know it’s been done.
I brought a supply of our own dish cloths and towels from home. I’m really picky and felt I had a level of control of cleanliness. I also brought our own facial wash cloths.

A suggestion to bring a Brita water pitcher/filters. Rochester’s water is fine, just heavily chlorinated and I didn’t like the taste.

Is this a 1 or 2 bathroom house? If you’re sharing (or not) the bathroom with your husband during his recovery, it needs to be squeaky clean. And he should not be cleaning it at this time. It’s good to purchase a new toilet brush and Clorox bowl cleaner and keep the Lysol wipes handy for touch ups.

Molds and fungus are problematic for newly transplanted patients so make sure the shower curtain is free of mold.

I know I tossed a lot at you on general information.

Do you have any specific questions?