rejection by his own fault

[mummtara1988]

I dont know if this will help me and my children but I heard this forum is good and if this dont help I dont know where to turn anymore.
I'm not a kidney pateint myself but a career of one. I'm 27 and have two children 9 and 4 my partner is 30 and he was born with a illness that made his immune system attack his kidneys. I've been with him for 8 years n love him dearly.
And this time on sunday its been 2 years since we got the better life. Transplant donor was his mum and we were all there supporting them both.
It went all to plan and I thank walsgrave for it all. But then 6 months ago our life was ripped apart.
My partner was rushed in very ill his kidney rejected. I broke that day n cant seem to get over it. But when docs came and spoke with us about why it had done it, I was angry and more broken.
My partner had missed not just a few tablets but nearly a months worth.
Now his new kidney is at 12% with creatnine at 522 we have another donor, his dad. But I hate him for it i can't help feeling that he is selfish and doesnt deserve treatment.
The reason i think that is is my dad is a very good man and his life is being taken from another illness he needs all new organs but told he wil die from it even with new. So for me to look at my dad and think he would love to live longer, then to look at my partner who threw a kidney away. Please if anyone is going through this, anyone who knows this feelin, I really need some help and support.
I'm a mum who is so stressed that I dont sleep, hardly eat and have no where to turn now.
I have family and friends but they dont understand they think i should let what's happened go and come to terms with it, but I'm really findin it hard
xxx thanks for your time

[SKM23435]

Mummtara,

I am so sorry to hear what happened. I have not been in your situation but can only imagine how cross I would be if my husband had done a similar thing. His mum has given him a huge gift putting her own health at risk and he has not taken care of it. I'd be upset that my partner wasn't taking care of himself to be around with me and the children in the future. I'd also be very cross that he'd allowed us as a family to return to life on dialysis (as you know dialysis doesn't just affect the patient).

However all this raises the question as to why your partner allowed it to happen.
Did he understand the importance of medication?
Was he depressed?
Was he having side effects from the medication?
Did he have a doctor with whom he had a good relationship and could confide in?

If your partners dad is a good match he is very lucky, however what ever caused him to stop medication last time needs to be addressed to make sure it doesn't happen again. He also needs a medical professional he can talk to and confide in.

I guess you can't change what has happened, but like you I would be very cross. You have no choice but to move forward. I don't know if you are in the UK but if you are it may be worth asking your GP if there is any counselling that would help you.
Do you think your partner has learnt from this experience and will things be different in the future.

Good Luck.
Let us know how things turn out.

Sue


I'm sorry to hear about your dad. It must be so difficult with him being unwell too.

[Grey]

My opinion is to miss a whole month of pills is simply irresponsible, especially after everyone will have told him time and again not to miss even one pill. I cannot say any more on this topic because I will get into trouble, but you are fully justified to be VERY ANGRY.

[mummtara1988]

Thank you both so much
he did know what would happen and now he's laid up in hospital with no immune system and flu
my children are in tatters they are only young and been through enough. I dont no how i can handle going through it again.
I flip out alot Ive called a counciling team hopin to get help because this last 6 months have been the worst. I love him but cant help but hate him more. Sue we have never had dialisis but it is something hospital said we need. I'm so scared as I dont want my kids seein all this.
Today Ive refused to go see him as I can only be angry with him. I've been a mess all day.
I am in UK warwickshire n feel so lost and alone. I have family but with dad ill i cant go to them.
So its just me n the kids against the world. friends help but dont understand, I'm told I'm meant to feel like this but my partners family think its wrong n they are not angry at all. If my son did it to me there would be no more family donors. I dont trust my partner has learnt his lesson and think he wil do it again. Xxx

[Rik]

Hi Tara ...

blimey you have had a crap time and damn well deserve to be angry ...
but unlike some who will post and say its all his fault and shame on him ...
with kidney failure and its surrounding issues I have found things aren't always that black and white ...
I think what needs to be done is take a step back and look at why he didn't take his tablets ...

I admit I'm crap at understanding or even accepting issues of others when the answer seems to be slapping them in the face ...
if its messy ... bloody well tidy it up ...
if its broken ... fix it or chuck it out ...
and health wise ...
if tablets keep it working ... take the bloody tablets!!

if its because your man is a complete arse and just couldn't be bothered to help himself and needs his bum wiping for him too ... then I'll jump up and down and call him a tw@t along with the best of them ... and I'll probably shout loudest too ...

but like Sue has suggested ... is there an underlying reason why he would damage himself and the secondary effect of hurting those around him?? ...
I know from dealing with it myself that steroids have quite an effect ... without realising they are ... 'roid rage' has been mentioned numerous times on here ... and that shows in many ways ... not just getting angry with those around you ...
depression isn't always that obvious ... but there could be other reasons too ...
has there been something happen where he feels he should be punishing himself for some reason??
Sue is right ... you cant change what has happened ... but you can help steer your man ... along with others if need be ... and get him out of his self destructive shell ...

its hard to lift yourself out of being angry with someone who seems so selfish ... but until you know why ... please try ...
so before any further talk of transplants ... find a way of getting the Drs at Walgrave do more that suggest he talk with someone ... to get beneath the obvious?? ...

I realise this is shadowing what Sue has already said ... but I think its worth saying twice ... (personally I think she said it better)
this is a great forum to get help ... support others ... and rant loudly too ...
I'm glad you found us ... I hope you feel you can do all three

[wagolynn]

Hi mummtara1988,

I am very sorry to read about your partners transplant rejection.

Whilst it does appear to be a very thoughtless thing to do, stopping the medication, there are some people, usually male, who have an (irrational?) fear of medication. In my view, transplant support teams should be on the lookout for this, in this case they were not looking or missed the signs. Like many things related to health, missing the medication does not have an immediate effect, this leads to the trap were medication is missed (by accident or on purpose) for one day with no apparent effect. This fuels the temptation to stop it completely, particularly if the consequences are not fully understood.

I think, he needs support at the moment, and discrete supervision in the future.

As to your anger, don't let it take over your life, get it out of your system and then forget it, life is too short.

Best wishes.

[mummtara1988]

The reason he gave was anti rejection can cause cancer he has always been afraid of getting cancer. I know he needs help but he doesnt think this. My children are now going to have counciling through school, my son is too young but they are going to keep eye on him.
My lil girls dad left before she was born and she asked for my partner to be her dad which to me is a fab gift for him n her, they have a bril bond and now its broken.
I know you shouldnt read a childs diary but my lil girl had stopped eating and is makin herself ill. Shes had a eatin didorder since she got bullied at age of 5, but she very smal and under weight. In her diary last nite she put, My daddy is sick mummy is stressed and I cant help them I want to dir or run away but I dont no where to go.
I've shown this to school she thinks its her fault doesnt matter how much i tell her its going to be ok but she wont listen she;s scared of losing another daddy. Its heartbreaking for me.
He was selfish to do this thinking cancer would get him, but now laid up his kidney is now 10% I'm not sure if docs know what to do at the moment, we get no info.
My dad tried to take his life april 1st because of his illness. He wanted to control of his life, thankfully police saved him and he is getting help,
My partner said he wants to live he loves life. After the transplant he found a new lease even wrote his story and he was a better man for it. But now he is in a bad way and doesnt seem to care that he lost his kidney he blames everyone but himself.
I try to control anger but I'm struggling, hoping the trauma team will help me as i cant help myself.
This year has been awful from start to end and now I'm broken. I was strong with everything thats been thrown at me but i cant be strong whilst broken. Im no good for my kids and feel I'm no good for him either
xx thank you all so much but just wish someone can tell me that it will be ok and I'll have my nice lil happy family back
If anyone has a wand please wish for me to go back 8 months so i can stop all this xxx

[rheaybou]

I am very sorry for all involved at this difficult time.

All I can say from experience in an unrelated TX issue is that being told you need help and knowing you need help area million miles apart. I'm a bloke and take the view of getting stuff sorted, but won't admit to needing my own issues fixing!

My issues were fuelled by fear of rejection, with medication and other issues things can soon build up, I hope your husband can reach a point where he is happy and willing to accept help from others, it's not easy

[wagolynn]

Hello mummtara1988,

Quote
"xx thank you all so much but just wish someone can tell me that it will be ok and I'll have my nice lil happy family back
If anyone has a wand please wish for me to go back 8 months so i can stop all this xxx"

It will be OK.

If you could just stand back for a moment, you will see that things are not as black as you think.

He can go onto dialysis until another transplant opportunity comes along, he is not going to die.

You need to understand this, and believe it, this will help your daughter.

He can live a very long time on dialysis providing he understands his treatment, (basically, small changes in diet) and he, you and your family can get on with the rest of your lives.

Many patients are able to continue to work whilst on dialysis.

Your partner appears to have, a reason for his actions, which is somewhere to start from, his medical team will/should help him to understand the cancer risk, it is very low, and transplanted patients are monitored so that quick alterations to treatment can be made, to prevent problems.
They will (they should have in the first place) explain this too him in a way that he can understand.

What went wrong, as I see it, is he did not understand that a transplant is not a 'cure', it is another form of treatment, and the treatment, in most cases, goes on for the rest of the patients life. The transplant can, and in many cases doe's eventually fail, so it is back onto dialysis until another transplant is available and so on.

I would not try to explain this to him yourself, the medical team will do that, from you, he needs support, and help.
I think, if you can do this it will help you because in situations like this the feeling of, 'not being able to do anything', is the worst thing to cope with.

I hope these thoughts help a bit.

Best wishes.

[Grey]

To be honest I would focus on number 1, Your self and your family. He has made his decision and must live with the consequences. Pity though, his mom only had one good kidney to give and he has squandered that let alone the massive cost to an already overstretched NHS.

I honestly feel deeply sad for you, but you now have to rise above all that and get your own good health and wellbeing back. For you everything will get better as you get over this issue, remember you are not accountable for his actions,, start to strengthen yourself and move on. You will succeed!

With problems like this, remember worrying about all the what if's etc., does not help. It has all happened, the sooner you accept that and move beyond, the sooner you will be in a better place.

Lots of good luck !

[sporti]

This is unbelievable. So sorry for your family. All I can say is he needs a shrink not another kidney. Surprised it has even been brought up to be honest. I don't know what to say but this post has given me a b------ headache

[mummtara1988]

Thank you everyone, you have helped me making me feel normal, all our family n friends are too calm on it all.
Its like it doesnt faze them how ruined everything is. My partner is now creat at 590 but potasuim is stable and looking at transplant in jan think docs got a pair.
He is waiting for an appointment for councilling through the hospital. i just hope we dont go through it all again. I also think me n the kids would have coped with it if it was natural rejection but as he caused it I cant help but to be angry.
I am now gettin help to control my feelings because I'm not brill at the moment with being upset and angry as usually I'm calm happy and outgoing. This has knocked me off the trust wagon. I will stress to anyone who has had transplant your pills are the most important thing in your life now, if not taken it can break families and kill your kidney.
Thank you all for your support all of it has broke me as a person and just wish i could do more to save my partner for my babies sake.
I am takin a step back a liittle for doctors to do what they want, but good job I'm not a doc i wouldnt let the op go ahead. I'd b angry with the paient.
Big thanks to you all xxxx

[sporti]

Think Docs got a pair of what?

[Rik]

I think Tara means they have a pairing ... live donor that matches Sporti :0)

[bigbuzzard]

Hi Tara

Something you said up there jumped out at me – about your partner being afraid of cancer – and "anti-rejection drugs can cause cancer".

It's really important to know that the drugs don't CAUSE cancer, but they do reduce the body's immune system, like they're designed to, to stop reject. This might increase the risk of getting some cancers – but that's all it is, a larger risk. In the same way, as we've probably all heard in the news this week, that eating lots of processed and red meat CAN increase the risk of cancer. It's all about weighing up the different risks. As he now knows, not taking the drugs as a HUGE risk of leading to rejection of the transplanted kidney.

There are loads of things we can do to reduce the chances of getting serious cancer, like not smoking, having our skin checked regularly by a dermatologist, eating well (get him to see a dietitian and take you and your kids along, so you can all learn about the healthy good things to eat). So, even though we have to take immunosuppressant drugs to keep our transplants healthy, there's loads we can do to maximise the chances of not getting other things.

As Rik said, there's all sorts of stuff that can be going on in our heads. Perhaps try and find a way to talk about it all together – in a positive way, looking for the good things – not making it a blame thing, and make it a family project.

Does your partner know other people with transplants that might help inspire him to want it to really work next time? When I was first diagnosed with kidney failure and started dialysis, finding this forum helped me loads, just seeing that other people were out there having a full amazing life, despite dialysis and transplants.

Sending you best wishes, and really hope you can all find a way to deal with this together, with dads and daughters being there for each other, and for the rest of the family.