anyone that had a bmt… help

[mamakayz]

I’m scheduled for bmt on 4/12 @ Johns Hopkins. What kind of care is really needed AFTER first month in hospital? Rep from cancer center says 1-2 months of 24/7 caregiving near facility. But I have no family or friends that can help me and need to find professional type assistance. Husband has to be here at home for care of 4 kids Anyone face same problem, let me know what you did please

Nadine

[geebeebee]

Hi Nadine,

It’s great to hear you have a match and are ready to go..best of wishes on the transplant. My Mom had one in November, and is doing very well on numbers and BMB.

This may not be a good comparison, as Mom is 65, and has Parkinson’s so has trouble getting around. She did require pretty intensive help from Dad since then, and only now is starting to be able to do a lot of things for herself.

Marsha would be a better comparison — hopefully she’ll put in her two cents.

Take care,

Greg

[Jimbob]

Nadine,
I has a SCT almost a year ago. I did not feel like I needed care 24/7 but I did need someone to watch over me. I was not as strong as I thought I was. I was back and forth about 3 times a week for transfusions and 3 times in 3 months for pneumonia. I was lucky that my wife was able to stya with me on Family Medical Leave and bothers came in form the Chicago area to be with me.
I suggest you see what the social service folks at your hospital can do for you. Good luck and God be with you.
Jim

[Marsha]

Nadine,

I had a BMT in Nov 04, I got released from hospital Dec 23. But was back in Dec 27 because of vomiting and dehydration. My significant other and my daughter were there. I would not take a shower unless someone was here with me. I usually slept quite abit and then tried to do things for myself to get stronger. I had to have help with my PICC line at first until I got a system where I could do it myself. I had alot of Stouffer’s dinners that I could just put in microwave and eat whenever I wanted instead of waiting for someone to fix me something. I had puddings, fruit cups, etc. on hand. I couldn’t drive until I felt strong enough which was about 4 weeks from release from hosp. the second time. So now I can do errands, etc. but still have someone go to my appts with me as I don’t know what they will do each time. I hope this helps and you can find someone to help you. I know the social worker at my hospital was very helpful in helping me make the adjustment from hosp. to home. Anything you need to ask please do, I didn’t really know what to expect and some of it was hard but some of it was OK too. Take care, good luck and God Bless

[PamyRn]

Nadine
I was given booklets from the Leukemia/lymphoma foundation. One was for the caregiver of a SCT. My Mom will be one of my major care givers after my SCT so she was reading it. It had a article about a man who lived in Cheybogen MI (my mom is from cheybogen..so she thougth that was cool). He had wife and small kids at home and could not be with him in Ann Arbor MI after his transplant…as he had to stay for about a month in an apt….A church in the area all pitched in and signed up for 8hr shifts to help with his care. As you read from Marsha and Jim they did sleep quite a bit and so did this guy. He said sometimes he never even saw the person sitting with him in the night. This may be an option for you…….a agree with Jim..see a social worker. Part of my pre SCT workup was I had to see a social worker. Maybe they will set you up with one………Good Luck. Hope they find my donor soon. Scary but inevetible
Pam

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