| Author |
Message |
Paul
Member
Username: Paul_palmer1963
Post Number: 3
Registered: 01-2014
| | Posted on Thursday, January 02, 2014 - 08:12 am: | 
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Hi im Paul, ive got chronic rejection. Lost 25% of lung capacity over a 12 month period... change of tablets did not work so they are now arranging radiation treatment in February.
i just would like to know if anyone has any advice to offer on radiation treatment.
also should i carry on with my job as a plasterer? Regards |
Raquel
Member
Username: Rcasas
Post Number: 2
Registered: 01-2014
| | Posted on Monday, January 06, 2014 - 01:03 pm: |
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Hi my name is Raquel and my husband has had 2 single lung transplants, neither of which have gone well. Now after his second he too is in chronic rejection, since March 2013. He is on rapamune, prograf, azithromycin and double strength septra. He was also recently put on a statin, pravachol, which they say helps reduce inflammation. Last April, my husband was offered photopherisis treatment, which is a "dialysis like" treatment of the blood. It is done during a 3 month period, every other week over 2 days as an outpatient. What was explained to us is that the white blood cells are separated and exposed to UV rays to kill them and then placed back into the body.
I'm not really sure how much of a benefit he got from it but he was declining rapidly and this appears to have put him in what the docs call a "plateau". This doesn't mean he is well...he just has not continued his rapid decline. Apparently, there are some studies that suggest this treatment helps reverse rejection in some people. Our center has done it to several patients but I don't know if anyone has had good results.
It isn't offered more frequently because most insuraances don't want to pay for it. We were lucky in that ours did. Right now my husband's FEV1 is 1.44, so as you can imagine he is quite winded and fatigued. He is not on oxygen yet because his SATs are in the mid 90s. However, he feels pretty sick most of the time.
Tim, I have never heard of radiation treatment for rejection. Pls keep us posted on your results. Good luck and God bless..... |
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