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#1
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Bmt s
Please keep my husband Ronald Porter in your prayers. He will be having aBMT soon. Any advise is appreciated
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim |
#2
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I think it is vital for patients to go into transplant as fit as possible. Then when in the room for all those days to stay as active as possible, and to try, try try to get out of bed, onto your feet every day. Hospitals are not healthy places, but a good attitude, and not letting yourself slip into sedentariness will go a long way. Also, I'm not sure about his pre-conditioning regiment, but many patients end up getting their calories through their veins for a few days. Try to get off of this as soon as possible by keeping up the good oral hygiene (do what the staff tells you even if it taste bad) to limit mucositis. Also, in my experience, meds can be great. But, anti-nausea meds cause headaches and pain relievers cause nausea. Try to stay away from these as much as possible, but use when necessary.
I think those were the biggest things for me. Prayers will be prayed, Brian
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26m Mystery liver failure 6/11 treated with prednisone. Falling counts, Rituxan attempted for Evans syndrome 11/11. Tx dependent and SAA dx 12/11. hATG 2/12, no response. MUD BMT 5/6/12. Living life! |
#3
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I agree with all of Brian's suggestions. From what I understand, during the BMT the patient burns many more calories than usual, so it's important to get in as many calories as possible. My husband drank ensure on the days he couldn't stomach solid food. Packing on some healthy weight now might be helpful as his appetite might change during and after chemo. Also, if you're planning on having children look in to banking. As a caregiver, make sure you take care of yourself. Believe me, it's easy to forget, but it's so important to keep you healthy. My prayers are with you guys.
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Samantha, wife of Joe age 34; diagnosed vsaa 2012; MUD BMT February 2013 |
#4
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Thank you both so much for the information!
Did/do either of you have a method of keeping everything organized? I'm unfortunately an unorganized person. I know that sounds very broad but any tips would be appreciated Brian that is a good tip about the dental. I was shocked and disappointed that a quick glance in my husbands mouth wasn't part of the pre transplant testing/physical. It seems a bit reckless to completely restart someone's immune system w/o considering the potential bacteria, infection, abcesed tooth etc possibilities. I will look up mucositis thank you and I really appreciate the calorie, getting on your feet and banking advise! When do they discuss and what is pre transplant conditioning? I hope y'all are well and thank y'all again!
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim |
#5
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Good luck with your husband’s upcoming transplant. All of the above advice is great. I’m surprised they didn’t have your husband go to his dentist for a check-up. I know it was one of the first things that was required for my husband.
As far as being organized – my husband took care of as many things around the house as he could before he was admitted for his transplant (April 2013). He arranged for someone to mow the lawn, had his car looked at, made sure I had all the banking information, etc. As for me – I bought myself one of those expanding files and labeled each slot – receipts, test results, health insurance information, etc. Then when we received any paperwork or anything that seemed important – I would just throw it one of those slots so when I had the time to sit and go through things – or needed something – at least it was all in one place. Try to get as organized around the house as you can – get rid of clutter that you don’t really need, believe me, you won’t have time for very much when he’s in the hospital. I cleaned out the lower shelves of 2 kitchen cabinets just for his medication – and both shelves are brimming with bottles, etc. Upon release, the hospital should provide you with emergency numbers to call – I printed labels with the phone numbers and put one on each phone in the house – no scrambling for the number when you need it. Hope this helps. Good luck with the transplant and let us know how he’s doing.
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Kathy, wife of Dennis (58 yrs old) diagnosed October 2012 w/MDS; bone marrow biopsy confirmed significant fibrosis;blast cells of 5%-10% of total cells, high risk refractory anemia w/ excess blasts (RAEB1); 3 cytogenetic markers; +1, -7, and +21 http://www.caringbridge.org/visit/dennismolyneaux |
#6
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Conditioning is the chemo combination to prepare for transplant. I believe we got the schedule a week before, but my husband was already in the hospital. He got 4 days of ATG, 4 days of cytoxin and 3 days of fludarabin (spelling). Cytoxin was the toughest because he needed a catheter to to constantly irrigate the bladder. It came out one day after his last cytoxin.
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Samantha, wife of Joe age 34; diagnosed vsaa 2012; MUD BMT February 2013 |
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