My Daughter

My daughter was diagnosed with kidney disease when she was 16 (one had already ceased and the other was diseased) this was secondary to hypertension. She is now 34 with two young children and her kidney has just failed. Along with this she has a heart condition which could reject a donated kidney. I am trying to find some support for both myself and her with people in similar circumstances. All ideas welcomed.

[millie193]

If your daughter is on dialysis, then you should have been offered help from a social worker, or they're phone number at least.

The renal team where my husband goes, had a group meeting with all the patients, before they started treatment, so that every one had the chance to meet each other,

and air their fears, and worries, and also get information, and dvds on kidney disease, and, treatments .

You should ask to speak to the hospital social worker, who can help you both.

[Hidden in reply to millie193]

Thank you for your prompt reply. I am going to her care plan meeting on Monday. I suppose I am putting feelers out to see how much support is out there. I hope your husband is well.

[Pat9]

I understand so much what your going through my grandson aged 24 is now awaiting his third transplant.. or should I say waiting for a donor.. he was born with a quarter of a kidney and we spent the first 8 years or so of his life in Guys hospital.. then he got my ex husbands kidney after my daughter donating one of hers and it failing due to a missed blood clot which ruined what would have been a perfect match.. but he has been ok up to the last year and has just gone on dialysis again we are now going through the many worried that you are facing to I am not much help but am here if you need to vent.. this is hard and we have no body at the hospital giving us support as the other lady has mentioned.. seems like different areas work differently.. good luck to your daughter and you x

[Hidden in reply to Pat9]

Hi Pat your grandson sounds like a trooper going through so much in his life, I really hope he has another donar soon, he deserves the chance at a quality of life. Thankyou for your offer and I may take you up on that. Take Care

[Pat9 in reply to Hidden]

thank you ..you to nice to know we are not alone in this x

[Sallyrango]

I recently retired from working as a Renal Counsellor in our local unit. We had a great counselling team and offered psychotherapy, counselling, emotional support, hand holding and advocacy. What a shame all units don't have a service like this. I believe BKPA have a telephone counselling service. Maybe you could start by ringing them, but also put pressure on your daughter's unit to provide some counselling and peer support groups. Our consultants all suported the service because it saved them time and money as we cared for patients emotional needs. We saw about 25% of all the patients in the unit. (a huge number).

[Hidden in reply to Sallyrango]

Thank you for that advice. I was floundering and needed to see what support there would be for my daughter and family. I am going to my daughters care plan appointment so I now have an idea of what's on offer. 😌

[millie193]

Thanks. My husband is ok. But one thing I have found, when you are on dialysis, it can be a long day for every one involved.

If your on the early shift, it means 5am onwards, and if your on the twilight shift its from 3pm onwards. Last night my husband got home at gone 11pm.. Since he started dialysis I am constantly knackered!!

[jajaja]

Have you found some good help? How did the care plan meeting go?

[Hidden]

Care meeting was good and informed. They think they may have someone in a similar position to my daughter that is local, so that would be great for her to speak to someone who understands 😌

[Evakiss]

That's good news. My mom was diagnosed a couple months after my birth, and she spent the next 10 years in hospital. She got through these hard times with the support of a fellow patient, they became best friends.

Unfortunately we couldn't afford that hospital's treatment any longer and moved her to a hospital more local. She had a condition which meant a donated kidney would also fail, but she never lost hope. Ironically she passed away from medical negligence when I was 13.

I wish all the best for your family.

[Hidden]

Sorry to hear about your mum Evakiss, like your mum my daughters has a heart condition which means she is unlikely to have a donated kidney. But I am an eternal optimist and live in hope that they can get the heart working better to enable a donation.