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#1
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CMV pneumonia
My mom was admitted to the hospital over a week ago with CMV pneumonia. Her CMV levels were increasing but are lowered now. She has been on a vent for 9 days. We are at day +108 with the transplant. They are treating with ganciclovir and IVIg. I keep getting the news that this is about baby steps. She is not getting worse and her ABC is getting better. I just hate having her on a vent and I'm ready for her to improve.
Are there any good references that you can share to help know what to expect and look for and grill the doctors about? Thanks K
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K, daughter and caregiver of Em - age 64 dx Oct 2012 with RAEB MDS Intermediate risk. BMT on 3/22/13. |
#2
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Sounds like your Mom is absolutely on the correct treatment for the CMV pneumonia. It will take time to wean down the vent settings and take her off completely. I guess if I were you and given your Mom's weakened upon weakened immune and infection-fighting system, I would want to ensure that her team is on top of any new developments such as an opportunistic bacterial (or fungal) lung infection, sepsis, etc. If her vital signs are good without blood pressure support and she is without fever and if her white blood cell count and other blood counts are acceptable, I'd say she's on the right track. She should be on heparin to prevent blood clots from being immobilized also.
Best wishes for your Mom's full recovery.
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Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee. www.caringbridge.org/visit/evanmacneil |
#3
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I just got the news I've been dreading for a few days now - that they dont expect mom to recover. Although her pneumonia has resolved, her kidneys have failed and she has an infection. Things here are pretty grim. I have found a lot of good information on this site. You have been a source of comfort, support, encouragement and information. Keep up the good fight. I hate this disease. I wish you well on your journeys. May you find comfort, wellness and the strength to endure.
K
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K, daughter and caregiver of Em - age 64 dx Oct 2012 with RAEB MDS Intermediate risk. BMT on 3/22/13. |
#4
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K - I'm so sorry about your mom. We wish you the same as you wished for us - comfort and the strength to endure. Take care.
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Liz, wife of Bob (64) dx 11/2012 RAEB II now 15% blasts rare t(1;3)(p36.3q21) Vidaza, Aranesp, Exjade |
#5
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So sorry to learn this, but your mom is still relatively young. The infection could be fought and as a hemodialysis nurse, I can tell you there can be real quality to life, even on chronic dialysis 3 times a week.
Peace and comfort to you both.
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Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee. www.caringbridge.org/visit/evanmacneil |
#6
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Hi, my Mum is 81 and has haemodialysis 3 times a week. She's doing unbelievably well. In fact her appetite is too good now and her doctor is telling her to watch her dry weight......so wonderful because last year she only weighed 94 lb.
She doesn't mind the dialysis at all because she has developed friendships with the other patients and almost sees it as a social outing. Mums doctor told me that also some people regain some kidney function after they have had dialysis for a while because the load gets taken off the kidneys and they have a chance to repair themselves. This didn't happen for Mum because she only has one kidney anyway and she has an autoimmune kidney problem, but it is something to bear in mind for your Mum. All the best to both of you. Regards Chirley |
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