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

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@caregiverx2

@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.

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Replies to "@loribmt Yesterday, they removed the PICC line from his arm and put a Tri fusion catheter..."

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. 🤗