Can anyone share their bone marrow transplant caregiver experience?

Hi, @ryanman0, I wasn’t aware that living in a hospital room with a transplant patient for that length of time was an option. Most major hospitals, that I know of, have the patient staying in the room and the caregiver living nearby, returning for frequent daily visits until the patient is well enough to leave for temporary housing. The hospital may limit visitation to one designated person, the caregiver.

From my experience at Mayo for my bone marrow transplant, it was a rather unique situation where we were actually outpatients. Once we receive the transplant we then return to our ‘home away from home’ whether it’s a suite at a hotel like my husband and I used, or Gift of Life Transplant house, a rental home, etc. We have to remain near the campus for 100 days.

Staying in a hospital room with the patient is really unusual from my experience. As a caregiver you don’t to need to be there every minute. The role of the caregiver begins after the patient is released. While in the hospital all the care is given by the transplant staff.
For what it’s worth in my mind, it makes more sense to find yourself a room in a hotel with a kitchenette so that you have a place to go, shower, rest…

In the hospital, keeping the room a sterile environment is crucial and there are protocols for safety of the patient. You will have to wear a mask 24/7 in the room and anywhere in the hospital. There can be no hugging or close contact, no fresh flowers, and no outside visitors. You can’t use the bathroom facilities in the room. You and your dad will most likely be having educational classes before transplant for food and living safety guides.

May I ask where your father is having his transplant? If you wish to stay in his room with him, then I’d suggest speaking with the transplant coordinator or the transplant social worker because they will be able to guide you through the logistics of staying in a room full time.

I’m here to assist you in any way I can but this is a new proposition for me as I’ve never heard of any clinic offering this option for a caregiver. Maybe some other members have experienced this and we can wait for their reply.

I’m happy to help you and your dad with whatever questions you might have regarding the actual transplant and what to expect. What led your father to needing a transplant?

Thank you for the reply. The hospital is MD anderson in Houston. He has MLA bone cancer

AML lukemia. I had a typo above.

Hi @ryanman0, I’m wondering if by MLA, did you mean your father has AML (Acute Myeloid Leukemia which is a blood cancer that originates in the bone marrow? It’s sometimes an aggressive form of leukemia that can be a tricky cancer to treat. I’m sure your dad has gone through several rounds of chemo and now, to keep him in remission,
he’ll need a bone marrow transplant.

I had the same cancer and a transplant almost 3.5 years ago and happy to say, I’m in a durable remission from AML. The transplant journey isn’t an easy road but it is well worth the effort. Your father is fortunate to have you as a caregiver. That’s not an easy task but together you’ll make a great team 😉
There will be days when he’s going to be exhausted, possibly nauseated and not feeling well. He’ll need encouragement to eat, get liquids and his medications down. That can be a challenge sometimes. Just to let you, there will be days he may just want to be left alone to sleep or have ‘me’ time. So don’t get discouraged if that happens.

MD Anderson is one of the leading transplant centers in the US, along with Mayo Clinic. He’ll be in very good hands.
Has he gotten a transplant date yet? How’s he feeling about what lies ahead?

My dad is super optimistic about the chance to get the transplant. He has had several rounds of chemo and so far in remission. After your info above, I called my dad. He gave me the number to the patient and caregiver coordinator I will call them and ask all of these questions on Monday. I'm glad to hear you are in remission and were able to get the transplant. Thanks again for the quick reply.

Hello. I have a friend who has vaginal cancer, kindly recommend the best doctor to save her. Thank you

Hi @cecymo, I’m so sorry to hear that your friend has vaginal cancer. Though she is fortunate to have you as good friend looking out for her welfare.

The doctor who diagnosed her cancer would most likely recommend her to a Gynecologist, who specializes in women’s reproductive health, or to an Oncologist who specializes in cancer. They would be the best doctors to take over her treatment to make sure the cancer is treated.

Was she just recently diagnosed?

We are in a different continent and would like to try treatment in Europe or USA

@cecymo I am a cancer survivor so I know how devastating it is to hear that your friend has cancer.

Are you and your friend interested in getting an appointment at Mayo Clinic in the USA? If yes, then here is the link you (or your friend) can use to request an appointment.

Here is the link that provides more information on International Patients. Please scroll down until you see this information. You will notice that Mayo Clinic does have care available in London in the UK if this is of interest.

-- https://www.mayoclinic.org/appointments

Thank you sooooo much.