Episode 152:

THE TRANSPLANT IS NOW SCHEDULED…  NOW WHAT?  Or better yet, what all needs to be done.  

Before, Denis and I got home from the transplant doctor, the dates were booked but there were still so many unanswered questions.  

• Where are we going to stay?
• Would the insurance cover it?
• Who would take care of our home, dogs and my mom?

In today's episode, I want to share the preparation experience.  Some things went smoothly, others were learning experiences and also the things we didn’t think about and forgot.  

Let me start out with the most overwhelming piece for me and that is all the paperwork, approvals and consent forms.  

• The transplant coordinator took care of most but it felt very confusing. 
• Once the doctor approves your loved one qualifies to start the process, you begin the consent process.   Consent to do the test, labs, port surgery, chemotherapy, injections (first).    
• The second round of consents are for the removal of his bone marrow
• The third round is the transplant of the reharvested cells. 
• You also have the referral paperwork for housing.   
• Denis had to be within a 50 mile radius of the facility
• Hotels are an options but the health risk is super scarey and the cost is huge
• Non-profit Kathy’s House requires a referral from a physician.   That took a few days. Then once they receive, they contact you with availability.  Then more paper work to fill out.  
• Health Insurance was another huge process.    
• Waiting on pre-approval - ask how you can speed up the process / what they need
• Case manager is assigned to us
• Questions to ask - housing, mileage, prescriptions away from home, and what other services they provide.  
• Other supplemental insurance
• Cancer insurance
• You have a whole bunch of tests, labs and surgery before.  You may also may have chemotherapy and injections too. 
• Medical records, physician signatures
• Faxing in paperwork
• Then my spouse’s disability paperwork.
• Signatures needed
• Medical records
• Faxing required
• My own caregiver disability
• Same for myself
• Working with the transplant coordinator - asking can I drop off or how can I get signatures and records without getting it lost in the hustle and bustle. 
• It felt like the first week, I spent so much time chasing things down and faxing in information, following up and ensuring everything was processed. 

There were many times, I wanted to throw in the towel waiting on paperwork or follow up more than you should have to - but in the end, it worked out.     I learned very fast that you need to ask who you should work with 

•  Denis’ HR manager was the best - Tracy would call us back right away and took some of the frustration out of what was needed or what we have to do.  
• Asking the transplant team, who handles all the medical records and signatures.   Learned fast that you can’t hand the paperwork to a nurse and ask them to get to the right person.   
• Ask for your health insurance case manager- Dave was so easy to work with and spend the needed time to explain things.  He checked in with Denis as his treatment progresses.  
• Once you get your housing, ask who you can contact with questions.  

I took all those names and added it to our binder book and I also added them to my contacts list.  So if I need them, they are right there.  

Next is arranging the housing.   Like I said the doctor had to start with the referral process.   After that all the forms had to filled out - thankfully they were all online.    But there was a lot of unknowns.  

• Prior to being accepted - I went on their website and did as much researching as possible.   I liked that I could see pictures of the facility.     (rooms, kitchen, sitting areas, washer/dryer, etc)
• I asked who knew about Kathy’s House and what could they tell me
• Then I got more information after acceptance 
• Shared that they have a refrig in the room and in the kitchen for us
• I can cook meals there
• The room looks like an upscale hotel room with a lazy boy, 2 twin beds, TV, desk and bathroom.  
• They also had strong wifii, access to copy and fax machine
• We were required to show a negative COVID text 48 hours prior to arrival - so had to buy covid home tests, masks were required and cleanliness and safety were a priority.  

What things were still unknown was….  

• What to pack
• It’s not like packing or a trip 
• Do we need towels, blankets, - I emailed and asked what things were provided.  That really helped  (bedding, kitchen, and towels were provided)  
• But I didn’t ask it all - I ended up packing laundry soap, toweling, cleaning supplies (sanitizer wipes), and kleenex which I didn’t need.
• I packed enough food for a few days but then I would need to get groceries while I was there which gave me anxiety 
• Thing I packed for my own comfort
• My coffee pot and coffee
• My bullet and green shake ingredients
• Snacks
• Computer, podcast gear
• Denis - ipad, puzzles, 
• Based on some of the resources I read, I know we needed some over the counter meds
• Imodiun
• Tums
• Tylenol
• Preparation H
• Chap stick
• Throat lozenges
• We ended up buying a medicine box since there were morning, noon, dinner and bedtime meds that Denis needed

Then there was the home front.  Which seemed to be hard for me.  Who was going to take care of the house, fur babies and my Mom.  Asking family for 6-8 weeks minimum was hard for me, especially with 2 labs.  

• Checked on someone coming in but didn’t feel comfortable.    After exploring a few days, my Mom offered to stay in my home with the dogs.  
• I then worked out a calendar where someone would stop by every day to check on the dogs, my mom and do the snow removal or take car to appointments.
• Brother
• Julie
• Kids
• Friends dropped off food for mom and they picked her up to attend the grandchildren events, dinners and grocery shopping.  
• They all rotated.   I could see them on the Ring camera 
• I Facetimed my Mom each day which helped her but helped me even more.

Caring for my Mom

My mom is pretty independent but she needed help with her bills, errands, appointments and monitoring -meaning her physical and mental health.    

• Facetime each night
• My brother became primary caregiver while I was away
• I did her bill electronically
• I got notices when her medication refills were ready.
• Access to her patient portal and could send messages to her doctor notes.
• I did attend one appt via zoom with her and the doctor.  
• I was so glad I looked at efficiencies and simplicities in advance.  

Working Off-site

I also had to figure out how I would work my job.  If I could and when I could.

• Caregiver leave
• Conversations with my team and boss
• Adjust hours
• Confirmed wifii
• Shuffled some assignments to other team members
• Packed what I needed
• Laptop
• Big monitor
• But wish I would have brought my office chair

A couple things I didn’t think about at all

• My own self-care - sure I packed my tennis shoes and a warm jacket/hat to walk outside and brought a journal.   But wish I would have thought through my strategy when I was there - (upcoming podcast)
• Denis’ isolation and not risking a virus, infections or anything that could delay his transplant
• Influenza did
• No visitors
• Drive there - limiting stops, no stopping for food.   He was in a bubble.  

We had a couple weeks to pull this all this together.  As I thought of things, I added them to the list to pack.   You had to plan being away for 2 months so things came up (like hair appts, changing dental appts, my prescription refills and more.  

I also had the list of follow ups to resolve before we started.  

As I conclude today’s episode, I want to commend Froedert Hospital and the transplant team for providing resources for Denis to prepare for his transplant.  It was a great resource to get us started but as a caregiver, there was much more to plan and prepare for.   That’s why I’m sharing this series of episode about Denis bone marrow transplant (aka stem cell transplant) so that you, the caregiver can find helpful tips and hints.  

Even if your loved one isn’t that BMT patient, I know there will be times, when you have to prepare and maybe my list will spark thoughts and tips for you. 

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