Kidney Transplant

[BellMcEnd]

Please could you share with me any positive stories you have of kidney transplants? My lovely cousin-in-law (is there such a thing?) has just been told that in all likelihood he's going to need long term dialysis and a transplant. This is all following meningococcal meningitis and septicaemia in May.

It's been an emotional rollercoaster for all of us and especially his wife who's been utterly amazing through all of it. The news today that his kidneys are unlikely to recover has hit her very hard as it obviously means long term treatment and medication. They've already had to come to terms with profound hearing loss and the amputation of several of his fingers and toes. He's only 30 and they've been married less than 2 years . They're a wonderful couple and I'd love to be able to share this thread with her so she can see some positive first hand stories. We'll definitely be looking into the possibility of live related donation as well as the transplant list.

Thanks everyone

I'm sorry I can't help you at all but am just posting to bump this up the list.

This is a quiet time of day - bath/supper/bed time etc.

You might want to 'bump' the thread yourself a bit later this evening.

for your cousin in law - far too young to be facing this.

My dad had a kidney transplant 25 years ago. He is now 80 years old, and still plays golf four times a week. Yes, the op was major (esp then) and he has to have regular check ups and takes quite a bit of medication, but compared to how ill he was beforehand and the gruelling dialysis, it literally changed his life.

Good luck to your cousin, by the way, op.

My dad had a live donor transplant just over 4 years ago and is doing really well. I was the donor and he was up and about after the op quicker than I was! As Science says, a transplant is life changing. Dialysis is horrible, my dad said it was a bit like the worst hangover ever but with out any of the fun beforehand. He is closely monitored now and will always have to take various medications but he is fit and well. I'm happy to talk to you or anyone else about what it's like to be a donor if you want to message me.

Should add that my dad was very lucky to get a donor kidney as he is an unusual blood group. Live donation wasn't the done thing those days.

The anti rejection medication is so much better now than it was when my dad had his transplant. Having said that, he is still on the "old" stuff, and is fighting fit. He collapsed with pneumonia last year and nearly died, and they thought that if he did recover, his kidney would be knackered. But it was the first thing to come back!

The things that can be done nowadays are truly amazing. Your cousin has every chance of finding a donor (now that live donation is supported) and the surgery has a very high chance of success.

Mama, amazing thing you did in being a donor. Have you suffered any ill effects?

I've had no side effects at all. I've had two normal, easy pregnancies since. I do have annual blood tests to check my kidney function but there is no reason to think it will ever be anything other than normal.

Hi Bell, I'm so sorry to hear about your relative. What a terrible thing to go through and what an awful shock this must all be :(

I had a double organ transplant 7 years ago when I was 26. One of those organs was a kidney. I have a rare blood type and was very fortunate to only have to wait 6 months for my transplant. It changed my life and I am without a doubt the most blessed and luckiest person I know :) I had no life before my transplant, I worked full time but it was such a struggle. I just really wanted to have some aspect of normality in my life so I kept working. My kidneys were failing, I was told I would be blind within a year without a transplant, my heart had been affected and basically every part of my body was starting to pack up. Since my transplant I have got married, travelled to Hong Kong, Thailand, USA, around Europe etc. best of all I have had 2 very healthy pregnancies and now have 2 wonderful little DS's :). I am also in the process of setting up my own business.

I am tired, very tired - this has nothing to do with my immunosuppressants but more to do with the fact that I have a 3 year old and 9 month old who do not sleep ... I wouldn't change it for the world!

The drugs can be a pain in the way that you become more susceptible to other illnesses. In the past 5 weeks I've had urine infection, sinus infection and stomach bug but you just have to get on with it. These illnesses are partly due to having the kids anyway.

I am just so grateful to my amazing donor whose life was cut far too short. I am in contact with his mum and I want to honour his memory by living my life to the absolute fullest and I will and do do that. I never take anything in life for granted and I often stop to think about how lucky I am and appreciate all of the moments in my bloody amazing life!

I wish your relative all of the luck in the world. This isn't the way he planned his life and it must be even more of a shock when you have previously been healthy, but he will be fine and will be healthy once again.

Sorry for the epic post, feel free to PM me if you like. There are lots of great transplant groups on Facebook too if they are on it x

Sorry me again! Live donor kidneys are proven to be more successful than deceased donor (because of the need for 2 organs and the type of transplant, I had to have a deceased donor). I have never had any issues or episodes of rejection in the 7 years x

DH had a Kidney transplant 30 years ago, years before I met him. He's fit and well. Our DCs wouldn't exist if it hadn't been for his transplant.

Thank you THANK YOU all of you for your wonderful stories. You have made me feel a bazillion times better. I can't wait to share these with my fab cousin in law and his wife who have been through so much. His wife rang me earlier today in tears to tell me about the strong possibility of a kidney transplant - he's currently on a specialist renal ward at a major teaching hospital. She had done a bit of googling and thought that a graft would only last about ten years. I'm a HCP but not in a renal unit plus it's the human side she needs, not just the clinical, iyswim. Your posts have all been amazing. I knew MN would be the right place!

At some point a lot of us in the family will be tested to see if we're a potential match (my DH would cut one of his out right now if he thought it would help ). Unfortunately, because of my cousin in law's ethnicity he's at a reduced chance of receiving a donor organ. I'm not of the same ethnic origin so I think it's unlikely I'll be a match.

I'm so appreciative to each and everyone of you for sharing your stories - especially the ones where you've gone on to have children post transplant. He's also going to need cochlear implants at some point (probably a whole other thread!) as he's now profoundly deaf either due to the meningitis or the antibiotics.

But! He's alive and he's incredibly strong both mentally and physically so I have no doubt he'll do well. He's also testament to our fabulous NHS and an excellent ICU.

to all of you

Bell, there is a lot of pessimism around the lifetime of transplants, but there are some positive stories here. Organs are most likely to reject in the early days after transplantation, so this skews the statistics (I'm a hcp too).

I'm from an ethnic minority, as is my dad, and he did get a donor within a year. We never expected it to happen -and he fainted when he got the call-- but it can and it does, and the move towards more live donors means that he has a really good chance of finding a match.

There is a strong history in my family of kidney disease but everyone who has needed one has managed to have a transplant. All have been successful. None have rejected. The care is so good these days. Tell your cousin and his family to be optimistic!

My friend had a kidney transplant about 25 years ago. This kidney eventually failed two years ago and needed a second transplant, this was a live donor (partner). She's in her 60s, is back to riding her motorcycle after making a full recovery and has never looked so well!

Her partner was not an ideal match as a live donor but they can do so much more these days to prevent rejection. Good luck to your cousin in law x

Thank you all so much. I'm so grateful for your lovely, positive stories which I'm going to show to my CIL's wife. It's been such a traumatic time for them but they're an amazing couple and they'll come through this even stronger than before. We'll definitely be looking at live - related donation, we're a big family so fingers crossed one of us is a match! .

Sorry for the delay in replying - we've just moved house and no broadband yet . Have been going cold turkey with no MN fix! Hope I've not missed too much!

My DH had a kidney transplant 2.5 years ago.
He was diagnosed with advanced kidney failure completely out of the blue age 27. He did a year on peritoneal dialysis and then had a live donor transplant from a relative.

Dialysis was tough, for all of us, but we managed. Peritoneal dialysis means he had fluid pumped in and out of his abdomen rather than needles in his harm. He hooked up to the machine every night and then it pumped fluid in and out for 9 hours while we slept. It's a great option for younger people as you get more regular dialysis (every night) and it's done by yourself at home rather than having to go to hospital 3 times a week for haemodialysis.

We were also able to go on holiday by taking all the kit with us - hotels etc were always very understanding and helpful.

The transplant went really smoothly - DH is now fit and healthy and running 10k races.

Happy to PM or email your cousin if you like. Being the supportive wife/partner is a hard road too, she'll need your support

Just re read about being a big family. Practically, the best thing you can all do is find out your blood type as that's the first step. After that, contact the transplant specialist nurse at the hospital to find out next steps.

It's important for you to remember that all the donor assessment process is completely driven by the donor. Nothing your CIL does will affect the process - the donor has to be volunteering of his own free will and willing to drive the process forward by making appointments for all the tests, chasing results etc.

Hope all goes well OP.

I had a liver transplant 10 years ago and because of the way transplant medicine has moved on the life of the graft is extended. Better drugs, improved care. As someone said up thread some patients suffer rejection early on.

I'm moved to hear of an 80year old transplant patient. What an inspiration.