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

Good morning Kat! Those pesky fleas! Yikes…if it wasn’t for those, you’d be breezing right through this SCT business! I hope those little bugger’s days are numbered. I do know the eggs can be in rugs/furniture and will pop open with friction or even the beater bar on the vacuum. So treatment with the food grade diatomaceous earth needs to be repeated. That will dry and crack the eggs and also any living fleas. Good luck to you on that business!

And ya to the blood numbers making their march towards normal! I’m glad your RN is back too!
Your positivity has been an important key to your continued success, m’dear! Sending an air hug!! 🤗

dwolden,
Thank you for the update. From COH in Duarte California I found the transplant team different. My Hematologist DR was not my contact once the transplant team setup all the testing. I was surprised, except Lori and others mentioned this fun fact. I got calls from the social worker and others on the official transplant team. As i entered the precondition week I talked with the RN's who gave me my chemo infusions. They updated me on each of the 5 days on what to expect in the transplant unit. Only 1of the five was too self- involved with the nurse she was training. My last day in the day infusion department my chemo took 2 hours to just get going!!!! I was being admitted to the hospital the next day!!! I never spoke to my Doctor this week. Once I was admitted into the hospital day 5 of conditioning, the transplant team fully stepped into action!! I found out about the 8-9 am rotating doctor and his team who checked in.
At Mayo, I have read sometimes you are at your offsite home. I see the reason to be nice and close. What I know is my assigned RN team was there. They have a number of patients, but i did find my overnight staff choose this time. A number of them had the spot for years. The calm in the nights allowed for extra time to help patients as needed.
Caregiverx2 and you both take care of you. Quiet moments of gratitude to start the day and throughout the day. The transplant team wants this process to go well. They facilitate together to make it work.

I hope all has been resolved and your husbands care plan is back on track. I am feeling very much in synch with you.
My husbands allogenic transplant here at Mayo Rochester is scheduled for August 22. Our home is four hours away so we moved here, temporarily, a month ago. Most of his pretransplant testing went fine but there were some issues. It has been a real roller coaster of scheduling changes and medication adjustments. I have struggled with not knowing who is coordinating all this: I am told it is his transplant specialist but of course it is difficult to get messages back and forth with a very busy MD.
We are on track now and managing the changes as they come. His first day of conditioning chemo was yesterday. We’ve had a lot of good patient education and support from peer mentors ( looking at you Lori) and the nurse managers at the transplant center are very good: I would prefer to have just one contact person but the “team model” apparently means several people. The reception folks at the transplant center always seem to know what to do with my questions and we are now with the stem cell transplant team at the hospital so in good hands. And we need them: we’ve been through a lot in life but this takes the cake.
Just want you to know you are not alone, keep advocating, you are his champion and that commitment will help your care team do the best for him.

I got my 2 week check today. I am 129 days from transplant. Besides flea bites, I am still doing very well. The RN nurse came back from pregnancy leave so I just met her. Very nice. I gave her the brief history; she knew about my cat and flea problem and said we are now connected! My red cell numbers are slowly coming up. All others are stable and platelets up to 270.
Think positive, and for every day wake up and say Good Morning. How do I feel today!!

caregiverx2
I truly hope as the first few weeks happen you will connect with those who may help, and more be able to help once they know what is expected in real time. I so agree with Lori, once the first 3 weeks passed, your husband may be in good shape for most of the next weeks to come. Planning is necessary but plans can change.
Faith and courage are needed on this journey.

Thank you for the encouragement. It helps.

If he were coming home to the house, then it would be much easier to find help. The 45–60-minute drive one-way through the Jacksonville traffic is a pretty much a game changer for our local friends. Plus, most are having their own medical issues. I do have a couple of people that may occasionally help. It will work out. I have faith.

Oh my gosh, you have a lot resting on your shoulders right now. The first few weeks will give you a breather. And usually the initial 3 weeks after transplant are the most challenging so he’ll be in the hospital during that time. By challenging, I mean he may have nausea, extreme fatigue and malaise until his new cells engraft sometime after 10-12+ days. The first week is usually ok but with noticeable fatigue and possible gut issues. By week two, the chemo side effects will make their presence known with potential extreme fatigue, mouth sores, nausea…all very common.
But by week three, with the new cells having engrafted in the bone marrow and set up ‘housekeeping’, he should start feeling progressively better with his neutrophils circulating again.

When he returns home, it is necessary to have a caregiver 24/7. But it’s not like bringing home a baby with constant monitoring or diaper changing. He won’t be an invalid unable to care of himself. Your husband will most likely sleep a great deal from fatigue. But he’ll be up, walking around the house, able to grab food from the fridge, able to shower on his own, etc. So the demand on the ‘day sitter’ is more to be there as a companion if he’s feeling weak. Basically, he just shouldn’t be alone for extended periods of time until his stamina and health are a little more predictable. Also, there will be required trips to the clinic for blood work or potential infusions. That falls on the caregiver as well to accompany him to appointments.

Do you have personal friends who might trade off on a daily basis who could come and keep him company while you work? Do you belong to any church groups who may be able to have a member stay with him?

This is the time that it’s ok to call on your friends! The proverbial ‘It takes a village’ doesn’t mean just raising children. It can mean checking in with ‘your village’ of neighbors, your friends, your husband’s friends, relatives to see if they can throw you a much needed life line as you and your husband are going through this challenging time. And it’s not forever!

Wish I could reach through the computer to give you a well needed hug of encouragement. Being a caregiver is an incredibly difficult job. I watched my very capable husband age with the weight of the responsibilities added to his shoulders. As a patient, we’re basically along for the ride, following doctor’s orders to the best of our ability…getting through one day at a time. We can’t worry about anything else but getting to the next day. Our caregivers are the unsung heroes and the pressure is draining! Please don’t hesitate to reach out for help from those around you.
Things do have a way of working out. 🤗

@loribmt
Yesterday, they removed the PICC line from his arm and put a Tri fusion catheter in his chest and he also had the last (#8) lumbar puncture (intrathecal chemo).

All of his pre transplant conditioning will be inpatient. He will have to stay in the hospital from tomorrow until approximately September 11 (day -7 until at least day +18). I'm not so much worried about when he is in the hospital; it is when he is released that is worrying me the most. When he transitions to outpatient he will have to stay within 30 miles of the hospital. We live 45 miles from the hospital. We have a place to stay (thank you Hope Lodge) so that is a non-issue. But, I will be juggling to make sure he has 24-hour care, going to work, and taking care of the pets and house. We do not have family close by and we will have to hire someone to stay with him while I work and do everything else. This is going to cost more than I make but I have to keep my job in order to have health insurance. I have faith that it will all work out somehow. But that doesn't make my worries go away. The whole thing scares me.

Good morning, @caregiverx2 This sounds so trite, but the first thing I want you to do when you read this message is to pause, take a couple of deep, slow breathes…exhale slowly through your lips. It’s a simple but successful way to calm the jitters.

Understandably, tomorrow will be a big day for both you and your husband. It is the start of his countdown to his second chance at life. This opportunity to have a stem cell transplant may give him and you, many more healthy years together. So believe me, I understand the underlying anxiety you’re feeling today as you approach day -7.
I think you’ll find the first couple of days won’t change much in the scheme of things. Pre transplant conditioning will take place daily with an infusion of meds, usually as an outpatient procedure. If I remember correctly at day -4, I as admitted for the last 2 days of chemo, then day of rest/flushing fluids and then Day 0.

The actual infusion of stem cells is very anticlimactic. It generally takes less than 20 minutes or so. You’re at Mayo where SCT’s are outpatient procedures so by the next day after the infusion, your husband most likely will be back with you at your place of lodging.
That can feel daunting but honestly, you're never far from the clinic. You’ll both return daily for blood work and possible infusions of meds or supplements like magnesium.
And, if there is EVER an issue, you have numbers to call the BMT/SCT team at the clinic 24/7 to get guidance. I did have a small issue about 7 days in and was readmitted immediately to the hospital. I promise you, that the teams at Mayo are exemplary with taking care of their transplant patients!! They will do everything in their power to keep your husband safe and comfortable. He’s in the very best of hands!
Has he had his port installation yet? What is worrying you the most?

Tomorrow (8/16/24) starts day -7. I feel unprepared and anxious.