Sticky Blood-Hughes Syndrome Support
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Kidney failure

Hey everyone,

Hope ye are all well. Just a quick question really and it is about those famous kidneys that I have been chatting about in the past. I have aps which is my understanding is the cause of my ckd. Now I feel the time maybe near when the kidneys are going to fail.

My question is does anyone know what the chances are of having a successful transplant with aps. My research suggests that there maybe a problem of bleeding. Also has anyone ever had the problem of not wanting a life saving organ. Basically I have chatted and chatted and I really don't want someone else's kidney inside of me. I keep having visions of wanting to rip it out.

I know it is probably rare that most ppl would want a kidney but I genuinley don't. My question is getting to the point now are kidneys transplants successful with aps and has anyone ever refused one. Have a good day. Catherine x

22 Replies

Hi there, it sounds like you have a real personal dilemma on your hands. I am sorry that things are so difficult for you, the first thing I would as is if there, were any people attached to the various teams who had offered you any real two way dialogue about the way you feel. I mean skilled people who understand the actual personal dynamics of transplant patients and their lot. There are other people on here who have gone through the transplant process. I wish you well with your decision. Mary F x


I do believe that counselling comes as part of the basic package with transplants. The need for these organs is so high that they have to be sure they go to the people that really want them and where there is the greatest hope of successes.

It sounds as if you need to have a session with a councillor to see what the underlying issue is for you and why you have these feelings. Clearly you understand what the consequences would be if you need one and dont have it. Its no good everyone spelling that out to you unless you can't get to the cause of why you are so adamant you dont want a replacement.

The people attached to these teams are expert in these things. Give them a chance before a final decision is made. You may well find that the reasons you are feeling this way is not why you think it is. Good Luck x


My mother was on a liver transplant list for over a year. One day we got the call and she calmly said, "Give it to a younger woman, one who has a family to raise. I'm 72 and I have had a wonderful life. Give it to a someone who has a long way to go." Counseling is part of the very complicated procedure. Along with immunosuppressant drugs while you are waiting for your organ. Another case: My nephew is a severe diabetic and just received his 2nd double kidney+ pancreas transplant. We are all praying this one holds. But you always live with the chance of rejection. He is back at work as an "At home Nurse". Chris is only 45 and gives thanks every day for his donors. Transplantation is a long, complicated, serious business with so many aspects to it. The psychological care is a large portion because nobody can take any decisions back and there are no do -over's. Trained professionals do everything possible to make sure you are secure in every aspect of your decision, what ever it may be, for whatever reason one may have. They do not judge. They just make sure you are able to live with your decision the rest of your life. So begin the process if you think your kidneys are failing. You should educate yourself at minimum. Make a list of every question you have. They are trained, non-jugemental helpers. Call your MD and have him begin the education process. It takes some time. Best of luck.




Thanks everyone for all your kind words: it means alot, and thanks for sharing your stories. I have to some degree educated myself about this process and really therapy isn't for me. I have made my decision: I just don't want someones' kidney inside me.

Really why I posted here was to see if there was anyone on here who has been in a similiar position. I realise the seriousness of not accepting a kidney if/when I nees it: equally I realise the seriousness of accepting a kidney just because it is what others want me to do and then ask for it to be removed.

I am not discarding your answerw it ia just not how I feel. Have a good day:-) Catherine.



Catherine, have you considered one fact. Depression and the long struggles we seem to have all had with the medical professionals not all having any knowledge of our conditions ?

Maybe a counselling session would be a way of showing your gratitude to those that have taken time to help you in the past. By talking to a councilor you will actually be helping them with another viewpoint they may not have encountered & what you say may well help others ?

You can not be forced into anything but you can become a valuable teacher/ educator to those who you discuss this with.

.Good luck.


Hey there,

I am not depressed and don't have any desire to share/educate those on how I feel. I value your suggestion but don't agree with you.

Have a good day...:-)



Fiona I am sorry I may of misinterpreted your meaning in your message. I am not a therapy hater, I am friends with a therapist but I am not her patient. I have had problems in the past with therapy. I don't mean to paint them all with the one brush but in my experience they are manipulative, controlling and try to tell you how to feel a certain way and if you don't feel a certain way then you are classified unstable, irrational the list is endless. Yes I agree to some extent that they may learn from me but reallistically they don't really like realisim in my experience.

Take Care,



Hi Catherine

It sounds to me as if you have had a bad experience with therapy because what you have described is most certainly NOT what you should be made to feel or how they should behave.

In fact if that is what happened you should think about reporting that person because in the most part the whole point of therapy is to allow the person to work through situations in their own time in a secure environment so that the person feels safe to be gently guided in the right direction to do that. They should never feel manipulated into any situation that is uncomfortable and should always feel in control.

I dont know what type of "therapy" it was that you had but Im sure that the councillors that would be part of any transplant team would be far from the description that you paint and would respect any decision that you came to. No one is going to force you to do anything you dont want to do.

I suppose that Im thinking that if you have asked these questions on here about a kidney transplant that is, I feel that there is still just a little doubt in your mind. If that is the case, I just feel it would be worth your while when the time comes, if it does and I hope it doesn't, that you just have that conversation with somebody very experienced in these things.

Again so sorry you have had that experience but it was really not normal in my opinion. Big Hug x



Yes you are right I did have a bad experience with a few therapists over the years so I know that it doesn't work for me. I am used to figuring things out myself and I don't like the idea of dependancy. There is a smigen of doubt not really doubt but uncertainty as to what to do next. I have moreorless made the decison but I would be interested in speaking with someone who is in a similiar position I guess who knows about aps and kidney failure. Alot of people think they know what I want but very few are listening to me on how I feel but it will be ok. Thanks for the nice mail. Take Care x


Sending you best wishes, and hoping that you have a peaceful day with whatever decision you arrive at. Mary F x


Catherine, please, no offense taken

It does seem that we have all had very negative experiences at some point.

Thank goodness for sites like this.

I do think that AP from ADMIN may have a point.

Why did you initially reach out ?

I wish I could be there to give you a hug, have a punch bag for you to hit & let you scream out all of your ftustrations at me. Ofcourse that is if you had the energy. I am not being flipant but many a time I have wanted to scream at Dr's and tell them that OK they win. Its all my imagination. I have no say or opinion in my treatment I will make your life so much easier and just forget about me. Leaving instead silent until out of site

& sobbing.

As I said I am not offended at all by your reply.

I am the one who needs to say sorry.

One last thing ( ducking now for future response)






Hi Fiona,

I have had some issues with a mish mash of psychotherapies in the past enough to put me off it for life. I posted here in the hope of finding someone who has aps and is experiencing kidney failure. It is my understanding that people with aps and transplants don't do that well. I guess what I am looking for here is someone to help me with ideas and tips on how to maintain the kidney function that I have left and maybe not have have to face this possibity of complete failure/dialysis. I am a big believe in natural remedies and I have tried some but I am not educated on all that there is out there so I guess if anyone knew some that would be great. Really that is what I want.

I know that the kidneys can suddenly fail too and I think of this everyday, actually I have this image of a kidney now in my mind as I type this to you It is crazy I know. I wish I could just bury my head and forget it but the mountain of drugs that I have to take each morning reminds me in that split second that yes I have kidney failure and maybe my kidneys could stop working today but then I get on with my day and push this thought to the back of my mind. The bruises on my legs from the asprin remind me that I have aps a constant reminder of the kidney failure.

I hear what you are saying about helping others and paving the way for other people in the same position as myself I do agree with you;some may say that I may help myself in doing so but at the minute I just don't want to do this. I feel that I need to processes my own emotions.

Anyhow thanks for the mail and I hope this explains to you as to why I did post here initally. I was only diagnoised in Janurary of this year and until now really I had no major health issues so this is all very new to me:I am trying to educate myself so I can possibly help myself. I know it is long and apologies for that but hey there you go.

Take care,



Hi there, we do have some on here who have done very well with transplant and APS, hopefully they will give their perspective soon. Mary F x



It is so good to see that you are getting so much off your chest, especially as evrything suddenly happens at light speed.

Wishing you all the best. As you will have noticed I can go on a lot too !!!

fiona (HUG)


Thanks Mary I appreciate your kind words,you too. x


And here is a big gentle hug to help those pesky pills along their way! ((((O)))) x


Thanks a million need all those hugs..x


Catherine, forgive the possible cheek here, but . . . All of us Hughies are very aware of the implication advanced by so many in the med profession that we autoimmune patients are really " nuts.". You see, as this thinking goes --we are sick because we somehow make ourselves sick with our neurotic obsessions.

In fact, most of us welcome our diagnosis as we have proof that our symptoms are "real.".

So many of us can sympathize with a previous bad experience with medical types pushing accusatory psychological assessments.

We're with you and we hope you get all the info you need to make peace with your decision.

Hugs, and take care,



Hi Gina,

Thanks hearing those words have made me feel better. I don't think I will ever be at peace with this and yes they all think I am crazy because I don't think their way and I don't want to do what they want me to do. I am just going to get on with my life and forget this.

Anyways chat soon,



Hi Fiona,

It is helping me to chat here and everyone is so nice and helpful. The fact that I will probably die without a transplant is scary. My choices are limited with dialysis probably not feasible. What I really want is to forget about it all and just try and get on with my life.

Anyways chat soon,



Catherine, having this horrible illness is hard for us all and even harder when it starts attacking major organs. We all want our lives back and to be able to get on with them as if nothing was happening but the sad fact is that we can't.

One of the things about bereavement is going through the different stages until you get to acceptance, you are actually still in those stages. Unfortunately as with any bereavement everyone is different about how they go through it, some will go through stages one to five in that order and others will jump about from one to five and back and the four to two etc and then get stuck. You are mourning the life you want and once new and we all have to go through that. Until you are ready to accept (the final stage) life is going to be more difficult for you. Its also going to make decision making more difficult.

This may sound like an odd suggestion given what you have said above but have you thought about seeing a bereavement counsellor? You need to come to terms with two things, the loss of your old life and previous good health and the loss of part of your body.


Thanks AP,

Maybe yr right maybe I do a counsellor but I am not going to one. I am happier when I am not thinking about all of this and I keep having this vision of asking my doc to take out the donated kidney so what does that tell you. Thanks for the cha and I do value what you say.

Chat soon,



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