Ugh,,,the devestation!!!

[goofynina]

I have a friend, Frances, who has been on dialysis just about the same amount of time that i have, she is an older lady and she is as sweet as can be.  She has been doing all her work-up for the big Transplant and it was scheduled for mid June over in San Francisco.   They were going to do a swap, where her and her nephew were compatible with someone else somewhere and their relative, they have been sending her to San Fran for so many tests and the family was so excited cuz the time was finally here.  Well, i got a call today from her daughter, it seems back in January, Frances got sick and needed 2 blood transfusions.  This apparently raised the antibodies in her blood and she found out yesterday that they she is no longer compatible so the transplant is off. 
I am posting this to make all those aware that are on the list that if they have a blood transfusion that may bring some things to a halt so just check things over and out with all the docs.  Couldnt they have found this out before she did all the extensive testing?  I know she would have to do them anyways but that is so heartbreaking to be so close and then be told you cant do it.   

[Sluff]

bummer..

[bolta72]

Yes, this is cruel, you would think they would tell her from the start

[okarol]

This happens all the time. Living donor transplants have been cancelled at the last minute because they antibodies developed due to a transfusion. Every time I see someone post that they are getting or have had a transfusion I cringe. You cannot refuse it, of course, if it's an urgent matter, but ASK the doctors what it means in terms of your future eligibility for a transplant. Jenna's donor was scheduled to donate to a man in Pennsylvania, but 4 days before their surgery they found a positive crossmatch due to a transfusion he had unknowingly been given during a heart surgery a couple months earlier. Since it was a heart doctor at a different hospital, the transplant team was unaware.
Fortunately there is the option of doing plasmapheresis, depending on the severity on the antibody crossmatch and if the hospital offers it. Has she asked about that? I hope she can make this work or find another donor!

[livecam]

I know of some people who are in that boat right now.  Transfusions affect people differently.  Some can be transfused and suffer no increase in antibodies that would cause problems with a future transplant.  I was given two units of blood the first time I was dialyzed and it had no affect on my ability to receive a transplant.  It is always good to avoid a transfusion if at all possible but sometimes it just can't be.

[KT0930]

I know this thread is kind of old, but I just found it and needed to add this ~ When I was put on the list in January, my coordinator told me that if I HAD to have a transfusion at anytime while I was on the list, I needed to have blood that had been specially treated. I'm sorry, I can't remember the name of what he called it, but I've been meaning to check with him about it anyway in order to put on my med alert info. I will post it when I find out so more people can be aware. Apparently this treatment takes out whatever part raises your antibodies (white blood cells, maybe?)

[goofynina]

I know this thread is kind of old, but I just found it and needed to add this ~ When I was put on the list in January, my coordinator told me that if I HAD to have a transfusion at anytime while I was on the list, I needed to have blood that had been specially treated. I'm sorry, I can't remember the name of what he called it, but I've been meaning to check with him about it anyway in order to put on my med alert info. I will post it when I find out so more people can be aware. Apparently this treatment takes out whatever part raises your antibodies (white blood cells, maybe?)

That would be great info for all of us to know KT0930, and i will be sure to pass it on to Frances just in case she needs another transfusion.  Thank you in advance

[KT0930]

I have called my coordinator and left a message asking him about this. Don't hold your breath, though...he travels a lot and sometimes takes up to a week to call back (even though his voicemail says within 24 hours).

[BigSky]

I know this thread is kind of old, but I just found it and needed to add this ~ When I was put on the list in January, my coordinator told me that if I HAD to have a transfusion at anytime while I was on the list, I needed to have blood that had been specially treated. I'm sorry, I can't remember the name of what he called it, but I've been meaning to check with him about it anyway in order to put on my med alert info. I will post it when I find out so more people can be aware. Apparently this treatment takes out whatever part raises your antibodies (white blood cells, maybe?)

I was advised only to take blood if necessary and then only leukodepleted blood products.

[angela515]

So sad.... this is why I did not allow my doctors to give my transfusion while I waited on the list.....

[goofynina]

So sad.... this is why I did not allow my doctors to give my transfusion while I waited on the list.....

Really?  I didnt think we had an option.  Did you ever have a problem with your blood count being low? 

[angela515]

Well I'm sure if I needed the transfusion or death was coming, I would have to.. but I always told my Dr's the few times they did want to do one, that they need to find another solution as that would be a last resort... I only was asked twice the whole 2 1/2 yrs on dialysis... but, still I said no, b/c I knew about it affecting the antibody levels...  but yeah, if it's a situation you have no choice, then you have no choice... but, for someone on the transplant list they should always let the doctor know, hey, is there anything else that can be done here? Ya know?

[KT0930]

I heard back from my coordinator, and he said just be sure the white blood cells are filtered out. They can either do this by putting a filter on when they give it to you or sometimes it comes already filtered from the Red Cross or blood bank. Just be sure to tell the doctor ordering the transfusion that you are on the transplant list and need to have your blood filtered.

After telling my husband about this thread, he is "absolutely amazed" at the lack of uniformity in the information that is given from one transplant center/doctor's office to another. I think he's beginning to understand why I spend so much time on this site!

[goofynina]

Thank you so much, great info    I will be sure to pass it on