I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: lainiepop on May 12, 2012, 05:15:52 AM
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Ive read quite a bit on here mentioning transfusion and antibody levels and transplants ect and don't understand that much of this tbh (i probably sound completely thick!)
Basically are blood transfusions really bad for kidney patients? When i had a c-section last year with my daughter they said unless my hg fell below 8 they wouldnt give me a transfusion, but my nephs then said i mustn't have one unless went under 4. They seemed to think transfusions were not good, and i just wondered if any of u know if you had a transfusion 20/30 years ago (i had one when born and an op when 8) do u keep antibodies from them or do they go in time?
Over the last year my transplant team have been testing my antibody levels but never say anything about them. I initially dealt with transplant team where i live in uk, but have been dealing with the one where i'll be having my op since we got ball rolling (where my parents live) recently. Anyway we met the first transplant nurse up here when my daughter was only a couple mths old (she's 10mths now) and my hubby was wanting to donate. She was pretty abrupt and told me hubby would never be able to donate to me (most likely) as i'd had 2 kids by him so would have antibodies to him, but she took his blood anyway and we discovered were are same blood group. I then discovered my parents were not in fact too old to donate so transferred down to where they live but had my bloods done for matching with them by the same nurse, who told me (in not so many words) not to really get my hopes up as the cross match would probably be positive as it can take 6mths - a year after giving birth for antibody levels to come down, plus id had blood transfusions in the past. She said i may as well go on dialysis cos a pre-emptive one would be unlikely so soon after pregnancy and it would be better to get one from a deceased in the meantime. This confused me as was the complete opposite of what my nephs had said they wanted me to have a live donor pre-emptive but she said with a deceased i wouldnt be putting someone through an unnecessary operation, which made me feel pretty guilty tbh, am just glad the people i loved were keen to donate!
Anyway sorry gone off on a tangent, but anyway my parents transplant team were fab just said my antibody levels seemed fine, whatever that means, i expressed my concerns about the cross match being 6mths after my daughter was born and having previous transfusions but they didn't share the same concerns and said a pre-emptive would be possible! So basically im just wondering do any of u know in theory who is right?! Do transfusions and pregnancies only matter if they are recent or do they change your antibody levels for life?
As for me, my dad passed all the health tests and the cross match came back negative, it was repeated a week ago and obviously still negative so op is happening 2 weeks tuesday. My iron is 10 so they said they don't really do blood transfusions with the kidney transplant anyway unless it goes below 8 but i have said i dont want this and would rather have iron infusions after as i am worrying about more transfusions cos of future transplants (hope this ones will last a little while tho!)
Thanks in advance for any info x
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I don't know much about the pregnancy part. I do know that blood transfusions are bad unless absolutely necessary. They cause you to have too many antibodies. A few years ago I was very sick and had transfusions. Now my antibody levels are 97% which means only 3% of the population can match me. So you want to only get blood if you're sure you need it.
The nurse who made you feel guilty is wrong. No one will give you a kidney unless they want to. I got my first transplant from my mom. She wanted to do it and she has had no problems since. If your dad wants to donate and is able then I say great.
Good luck with your transplant!
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Thanks for your reply jeannea. Should i ask my clinic what my antibody levels are as they've never given me a % just said they are ok, whatever that means!! Tbh im not sure i fully understand the pregnancy thing either, they gave me the impression they go with time but would always have them against my husband but im sure some husbands must've donated to their wives after kids. Nurse made it sound like if u had transfusion or a baby u would never have a transplant.
Will def only get blood if i need it now tho! Glad your mum had no problems after and is ok after donating i do worry bout my dad cos he's not young!! xx
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I don't understand how having kids with your hubby would give you antibodies against him? Just because you carried a baby made by him doesn't mean you gain his antibodies, or antibodies against him. This is especially true if you're the same blood group, because there are some cases where the baby will have a different blood type (the dads) and the mom's body will attack it if you will. I don't know this for sure, but I really can't figure out how having 2 kids with him would give you antibodies against him, and make him ineligible to receive a kidney from him. I donated to my SO (before I got pregnant) and we were a fantastic match. We had been together awhile, shared bodily fluids if you will and nobody ever said a thing. Plus, spouses donate to each other all the time! I think the nurse is not up on her stuff, and is trying to scare you, or just be plain mean and depressing.
I do know that a blood transfusion can mess up your antibodies permanently, which is why they do not do them to kidney patients unless absolutely necessary.
But I can say that getting a kidney from a deceased donor can be better in some cases. My SO had a clotting issue, and that killed off my kidney. When we were discussing this with the transplant team recently, they said a deceased donor kidney would be better for him because they can take more of the tubing and piping if you will. They took just my kidney because I need my blood vessels for other things, but on a deceased person they can take more of the vessels that lead to the kidney, which in my SO"s case will be better for him. But all of that has NOTHING to do with one being better than the other for not putting someone through surgery.
I really think that nurse was being a..... and you should ask to speak with someone else or get a 2nd opinion. I am not sure if you have a transplant head, but I'd suggest talking to them about these things she's brought up, and explain what she told you. I hope she isn't saying this sort of stuff to other patients as well, because it seems to me that it's going against her job description in a way, discouraging patients and families and not trying to save and improve lives.
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How it was explained to me is, your husband and you share bodily fluids together. But that is why a spouse can be a good match even though they aren't a blood relative. That doesn't cause the antibody problem. Along comes pregnancy and your body sees this as a foreign object and builds up more and more antibodies during each pregnancy. Your PRA can be raised significantly by the pregnancies. Mine is 100% -- no transfusions, just 4 kids! That is why my husband would never match me, because of my PRA. Not because my body produced specific antibodies to him. But because my body has really stong antibodies. In a lot of causes, a spouse is a perfect match, but the PRA is what determines if your body will accept his kidney.
I think there has been some confusion through the posts. There are lots of members here who have donated or received a kidney from their spouse. Best thing is to ask the transplant team. I hope some reply with their experiences. :thumbup;
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Paris thank u for your explanation, does that mean your antibody level is 100% to everyone? How does that affect getting a transplant? I will ask my team as i'm curious, cause my transplant team who are now doing the op said pregnancy antibodies would have no affect on my cross match with my dad, but might with hubby until 6mths after birth when the level had come down. All they've said is i have no reaction to dad's blood so transplant can go ahead. I will definitely not be having more than 2 children and am going to turn down any blood transfusions so the only thing that should affect the antibody level in the future is the transplant itself, is that right, will having dad's kidney increase my antibodies if i were to need a future transplant? it's all so confusing and all they've said b4 is your antibody levels are fine but i dunno what they class as fine! How old are your children do you have antibodies against them too or can children be a good match?
smcd23 thanks for your response, thankfully i deal with someone else now and they have been brill pushed all dads health tests through quick then finally did cross match operation is 2 weeks tuesday, but i always have in the back of my mind what the nurse said incase i ever need another transplant, i can remember going in feeling quite optimistic and coming out thinking ive 2 kids and blood transfusions i'll never get a match! How is your SO getting on now is he on the deceased donor list? That must've been upsetting that your kidney clotted off, did they not know prior about the clotting issue, was this his first major surgery? I'm on it but inactivated, just suspended there accumulation time incase the live donor option fell through. Don't know how soon after the op i'll go off it not sure how it works when ur suspended!
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smcd23 thanks for your response, thankfully i deal with someone else now and they have been brill pushed all dads health tests through quick then finally did cross match operation is 2 weeks tuesday, but i always have in the back of my mind what the nurse said incase i ever need another transplant, i can remember going in feeling quite optimistic and coming out thinking ive 2 kids and blood transfusions i'll never get a match! How is your SO getting on now is he on the deceased donor list? That must've been upsetting that your kidney clotted off, did they not know prior about the clotting issue, was this his first major surgery? I'm on it but inactivated, just suspended there accumulation time incase the live donor option fell through. Don't know how soon after the op i'll go off it not sure how it works when ur suspended!
They had no idea about his clotting issue - he had 2 prior fistula surgeries - the first one was in his wrist and when it didn't work they wrote it off as typical, because I guess in that location it has a high rate of not taking. He had the 2nd one done about 2 months before the transplant. That one worked in the hospital but when he went to have his stitches taken out 2 weeks later, it was not working. The hospital that did the transplant I don't think was made aware of that before the surgery because they had originally scheduled the transplant for a few weeks after the fistula operation (and the fistula was done at one hospital, transplant another). During the pre-op testing, they checked his clotting, and he clotted fine on paper. It's something about when he has an arterial cut. They are all aware of it now (the local hospital where he has his minor stuff done, the old transplant facility and the one he is waiting to transfer to) and while they don't know why, the plan of action is the same - he has to be on blood thinners starting in surgery and continuing indefinitely. As far as where he is on the wait list... he's status 7 inactive which mean he is still gaining time, but he can't be called because the facility he is currently listed at doesn't feel that his insurance is adequate. The new facility is in the process of listing him and transferring his time. Once he transfers, they activate him and transfer his time, it will be like he was active the whole time, and he will be at the top of the list at his new facility. So we're hoping 2012 is the year of the new kidney (and 2013 can be the year of the new baby lol)