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Post by Blossom/Jackie W. on Jan 9, 2011 10:36:11 GMT -5
Yesterday in an e mail about some other things, I also received the following from Mark (the RRT). He wasn't sure he'd be able to post himself becasue of time constraints but O.K'd my posting, as well as any subsequent updates.....
He said......
I just reviewed the postings and really do appreciate all the kind thoughts and words from everyone. Please let them know how much it means to me/us!.
Kim started two weeks of IV antibiotic therapy for a pseudomonas infection that was discovered when the tissue samples from her bronchoscopy were cultured. She was to finish that course and then return to St Louis for treatment with Thymoglobulin, a powerful immunoglobin that targets Thymocytes, thought to be responsible for GVH ('graft versus host' disease), both on the acute and the chronic levels, but also wipes out the rest of the immune system in the process. It has some severe potential side effects which require one to be in the hospital for quick corrective action, if they occur. She is also to receive high-dose Solu- Medrol with the Thymoglobulin to counteract predictable infusion-related difficulties and to help thwart any acute rejection that may indeed be trying to occur.
Well, as our luck seems to be running, we got a call from St Louis on Thursday telling us that for a number of what seem now, good reasons, the big honcho doctor does not want to wait the full two weeks for the antibiotic therapy to finish, preferring to get her up there after 6 days of the 14 to do the Thymoglobulin infusion 'during' concurrent antibiotic therapy, especially since infection and re-infection are problems encountered in the therapy more than 25 % of the time (according to the literature). SSSOOOOOOOoooooo, Kim and I are driving to St Louis either this afternoon or very early tomorrow, so she can go into the hospital on Monday and start therapy. ......
......like everything else in these past almost 29 years of dealing with Kim's challenges, we take one day at a time and have become quite adept at rolling with the punches! We are always optimistic and have found our optimism well-placed thus far. "
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Post by mary57 on Jan 9, 2011 11:16:47 GMT -5
Thank you for the update Mark/Jackie. She seems to still have a long road ahead of her, so my prayers are going with both her and Mark.
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Post by susanny on Jan 9, 2011 22:53:47 GMT -5
Thank you, Jackie, and thank you, Mark. God bless this child and her family, and all those that come in contact with her care. She surely is a fighter.
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Post by Blossom/Jackie W. on Jan 10, 2011 11:58:57 GMT -5
I don't know if I mentioned Sue, but this is Kim's 2nd transplant. She has CF. She's also recently become an RT herself! Fighter I think is indeed the word. Obviously from good stock!
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Post by susanny on Jan 11, 2011 10:08:54 GMT -5
I don't know if it was you who posted about Kim's other transplant and her working towards becoming an RT, or Mark. I think I read something he'd posted somewhere, maybe on the main site now that I think of it. I would be so proud to have her as a daughter, wouldn't you?
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Post by aero63 on Jan 11, 2011 10:51:56 GMT -5
Jackie, thank you for passing the update that Mark gave along to us.
Mark, I wish you all the best at this time. What a courageous and strong family. Sending healing thoughts out to Kim and family.
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Post by John on Jan 12, 2011 22:07:31 GMT -5
Thank You Jackie! Kim & her family are in my prayers
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Post by Deleted on Jan 14, 2011 5:39:43 GMT -5
All the best to Kim, and her family. I admire her so much, God Love her and protect her, and heal her. I have learned so many lessons from so many people, Kim, Mark and family you have taught me to never give up, to fight and aways have hope. I wish i had a magic wand to make this all go away. Kim you sweetie keep fighting, and I will keep praying and keeping postive thoughts for you and your family. You are all such an awesome team. (((((((((((((((((Linndie))))))))))))))))  |
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Post by Blossom/Jackie W. on Jan 14, 2011 7:40:33 GMT -5
Y V W guys..... I'd say it was my "pleasure" but in reality those words don't seem right or fitting....  Anyway; as of Thur (last night)....... |
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Post by susanny on Jan 14, 2011 11:46:15 GMT -5
Here she is, Kim, sticking by your side. I am so sorry you had such a bad experience and hope it doesn't repeat itself. Doesn't sound like it will, thank God. Be strong, you will get through this. You too, Mark. You are not alone in all of this as most, if not all of us are parents and know how you must feel. Many prayers and angels are surrounding you all.
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Post by mary57 on Jan 14, 2011 19:02:43 GMT -5
Thank heavens she responded OK to the second try, and will be keeping all of you in my prayers for a good outcome and speedy recovery.
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