Can anyone share their bone marrow transplant caregiver experience?

Posted by ryanman0 @ryanman0, Nov 19, 2022

I will be the caregiver when my dad gets a bone marrow transplant since we were lucky enough to find a 100% match. Can anyone share their experience regarding being a caregiver for a bone marrow transplant? I will be moving from Dallas, TX into to his Hospital room for 2 months followed by some months in the patient housing or a hotel. I'm trying to plan for what to bring and what to expect while living in the hospital room and then the housing. I was told that due to his lack of sufficient immune system, it will be like a lock down type of environment.

Can anyone describe living in the hospital room such as:

the sleeping arrangements such as a couch. Chair, or bed. Is there a plug nearby for a cpap machine. Can I bring extra pillows?

how large are the rooms?

is there somewhere to store 3 luggage bags?

what did you eat and where, did you mostly stay in the room. How often did you leave the room?

is there a TV to hook up streaming or Xbox?

Is there anywhere to do any type of workout?

Did you stay in the room the whole time without leaving and if so is this only during the patients most vulnerable times.?

Did you wear a mask all the time all day long?

Did you leave the area to refill medicines or buy supplies and groceries??

What was the most challenging part of living there

Any other details that you think would help me so I know what to expect.

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

Lori, Volunteer Mentor | @loribmt | Dec 18, 2023

In reply to @cupofsunshine "Good Morning @loribmt. Thank you for checking back in with me! But first, may i take..." + (show)

@cupofsunshine

Good Morning @loribmt. Thank you for checking back in with me! But first, may i take this moment to wish you the very best holiday season and merry christmas to your and your family! I've made a couple more trips up since our last communication. And I'm heading up next week. Overall, the team and I have decided to hold off on the transplant (or diving straight in). The reasons being is that I'm responding really well with the Pacritinib treatment. My spleen was shrinking most of the year. But then about a month ago, i noticed it starting to enlarge again (because of my eating habits). I was preparing, fully, for heading into the bmt. I gained 20lbs (im also on Mertazapine for anxiety and sleep). Along with weekly therapy sessions, i have to say. I have fully thought this through. And i do fully understand, that my body might dictate the timing, not my brain. They had a 90/100 mismatch and couldn't do it because my brother never did his test. Without my brothers test, they wouldnt have even had a back-up. If my 48-49 yr old brother (in perfect health) tested at 100, then the mismatch 90/100 would be the back-up. The doctors were trying to explain some things to me about Myelofibrosis very early on. And because i was so so very sick in Feb/March/April, I didn't understand what they were trying to tell me. Which is why i had other people "sit-in" some of those video appts. My sister completely backed out of helping me because of what the doctors said. My brother backed out just recently because they scared him when they were explaining the "possible" side effects of the Neulasta injections. First of all, Myeofibrosis does not have a good reputation for transplant. Meaning, it doesn't transplant very well, EVEN WITH a 100% donor!!! Out of the 10,000 transplants the Mayo has done....they werent all for Myelofibrosis...they were for every type of Leukemia. One day the doctor said that we would have to find a 100% young donor...in order to have any hope. And so that just stuck in the back of my mind. The GOOD news is that the new drub Momelotinib just got approved and released to the pharmacy forumularies in September. Now they haven't put me on that yet. I have to still see Dr. T and discuss this. Our last discussion went well. He said they also have other drugs they can put me on until i really absolutely have no other choices. The things working in my favor right now.... my hemoglobin levels are on the rise (and if they drop again i can take the new drug he has to compliment the Pacritinib), so im not transfusion dependent yet. And my blood levels (the main four things) are staying pretty consistent with the Pacritinib. My bone pain is near to none. And im active. I can go walk a few blocks. I'm not wheelchair bound. I'm still living!!!! and busy taking care of my teenage son. While i have lots of moments where i want my old farming life back (my herd of goats), Im ok with my quality of life now. And i installed a new air system in the house and am still working towards things with the bmt in mind. Hope u r getting plenty of sunshine!!!

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Wow, @cupofsunshine! So much is going on for you it’s making my head spin! 😲 I’ve read through all three of your responses several times to make sure I got everything! First, I’m happy to hear that you’re doing well on the new meds and able to delay the transplant. There have been some health improvements too with the rising hemoglobin and no bone pain! It’s awesome to hear you’re able to be active again. I am very sorry about having to step back from your enjoyable life with the goats on the farm. But maybe in the future that life will return to you…baby steps in getting back to good health.
It sounds like your brother is maybe stepping up to the plate to be a donor if he matches? It’s very safe for the donor to do this so I hope, if he’s a match, that he does go through this for you. Be The Match is a wonderful organization to help with this process. It would be good to get all your little duckies in a row in order…just in case.

Being able to find a caregiver was fantastic! I’m happy you were able to get this woman on board if you need the transplant. It’s imperative to have a caregiver! There’s not really a great deal of personal/physical care you’ll need but just to have someone with you if you’re feeling weak, to help with meals, to chauffeur and accompany you to appointments at the clinic. I’ve heard of some people tag-teaming family members if they can’t have one dedicated person for the entire length of time. Keep me posted on what transpires!
Have you looked into lodging options for transplant?

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