Can anyone share their bone marrow transplant caregiver experience?

I have stayed there for a week back in February, as a practice run. It would be hard for me to know if it will work or not, tho, because im not sure how i will be doing thru the transplant. I cant imagine then kicking out a bmt patient just for trying to eat to stay alive. But, really, they are seriously so so strict. they have signs everywhere that say "no eating in the rooms". But this last visit to the GoL transplant house in May, the lady said they sometimes have to makeaccomadations (for feeding tubes?), but she didn't explain that fully. There are no tvs in the rooms, its just two beds (you can have a third visitor for an additional nightly fee) and one bathroom, a dresser, a closet , a recliner or chair and a laptop cubby. It is very quiet tho. Yes, when i finally had my in-person social worker interview/appointment, the social worker said that there is about one month of coming in every single day. The hotel gave me the nightly fee and that came out to 6k a month, and so i felt like that was completely ridiculous. An apartment in town (priced around 900 to 1500/ month. The GoL if only 900 a month (@30 a day for two people). But I agree with you, if im looking really really sick, why on earth would i want to leave my room just to go eat. 🙁

I am all set up with the portal, and live about 40 miles from Mayo. My husband is going to be my primary care giver with a few wonderful friends chipping in along the way. We must have made 100 + trips back and forth so far in this last year. I actually was hospitalized there for 8 days (severe bone pain) in March 2022, and 23 days in Oct-Nov (when my immune system was so low and I had a fever). How long was your stay in the hospital when you had your transplant? Did you have any surprises you didn't expect?

Thanks for your reply, Debbie

I am a Multiple Myeloma cancer patient with high risk factors and had a Bone Marrow Transplant at Mayo Hospital here in Jacksonville, Fl, in September 2020, in the height of Covid.

I was hospitalized for 13 days, during which time my sister stayed with me. She slept nights but would leave during the day to do her personal stuff and shower, change, eat, etc. She slept on a pull out hospital sofa-bed, which she said was comfortable. She didn't use my bathroom but one on the Transplant floor. She wore a mask around me except when she slept.

Having her there was helpful, although the Transplant nurses was right outside my room.
Because of all the drugs during the various phases of treatment, I started to experienced a sense of urgency to go to the bathroom. At night, the nurses put on a bed monitor that locks down the bed and if you try to get up it would set off an alarm.
Because she was there they agreed not to engage the bed alarm.

She also ordered all my hospital meals for me.

There was an exercise bike in my room and others on the floor of the Transplant Ward.

There is also a TV and phone wall jack to charge your phone.

The nurses bonded with her and said that it is evident that I will be released into excellent care at home.
Because I live 15 minutes away from Mayo Hospital and was doing really well, I was released just 13 days after transplant.

Hope your dad's journey is an easy one. I wish him and you all the best.

Do you know if there are other places to procure donors...other databases they can search, even overseas? Right now, my whites are holding out. my hemoglobin is beginning to lower (9's), but bounces in the 9 and 10s, my platelets are the lowest ive ever seen now in my entire life, @ 140 range. the other things in my blood look like a complete disaster, but then i tell myself, that must be the blueprint of PMF. My spleen is at 9 cm, like last month. Its not really shrinking anymore. They have me on half the regular dose of Pacritinib (for a reason). And my transplant doctor up at The Mayo said that they have the new medicine called Momelotinib. That will help reduce the anemia portion driven by the PMF.
My family is slowly coming around (my mom and brother), but not my sister. They reacted so irrationally out of fear. And I cant blame them. really. They want to see a cure, as do I. They rather i wait for a cure and not do the transplant.
Talking about finding cures...we all know these scientists and researchers are working hard at it every single day. And, actually, I think they are close to finding one. If my disease would only hold out until they found the cure, wouldn't that be fantastic!!! Heres to extremely positive and hopeful thinking.... we can dare to dream too. 🌌🌟🌠

Do you know if there are other places to procure donors...other databases they can search, even overseas? Right now, my whites are holding out. my hemoglobin is beginning to lower (9's), but bounces in the 9 and 10s, my platelets are the lowest ive ever seen now in my entire life, @ 140 range. the other things in my blood look like a complete disaster, but then i tell myself, that must be the blueprint of PMF. My spleen is at 9 cm, like last month. Its not really shrinking anymore. They have me on half the regular dose of Pacritinib (for a reason). And my transplant doctor up at The Mayo said that they have the new medicine called Momelotinib. That will help reduce the anemia portion driven by the PMF.
My family is slowly coming around (my mom and brother), but not my sister. They reacted so irrationally out of fear. And I cant blame them. really. They want to see a cure, as do I. They rather i wait for a cure and not do the transplant.
Talking about finding cures...we all know these scientists and researchers are working hard at it every single day. And, actually, I think they are close to finding one. If my disease would only hold out until they found the cure, wouldn't that be fantastic!!! Heres to extremely positive and hopeful thinking.... we can dare to dream too. 🌌🌟🌠

One of the hardest part of this journey (transplant process), is knowing that you have two siblings that could be potential donors. I went into this decision head-on last year, not even thinking twice. Like you said before. And then, as time went on...they started realizing the realities of my survival. The transplant doctor told them it was 50/50 and add another 30 percent on that i live with disabilities afterwards. When my sister heard this, she just broke down and completely severed ties with me. She is 16 months younger and (I bet) would be my 100% match. But my brother, at least is testing. Whether or not he ends up donating is a whole different ball game. We just can't lead a horse to water. You know. Today, my local oncologist was extremely surprised when I mentioned (that the donation team told him there is a possiblity that he gets leukemia from the Filigrastem/Neupogen). When i looked up the side effects of the drug, nothing like that is even mentioned in the fine print. No matter how altruistic the "ACT" of donating blood and bone marrow is.... some people will not go thru in the end. I just have to hope the Mayo can find me some unrelated 100 percent (extremely young) match. I have to continue on my journey with all the hope, strenght and courage i can find. 💓

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!!!