My daughter has CKD stage 3

When my daughter was born in 1990 there were complications when she was having a complete blood transfusion which resulted in her having acute renal failure and her left leg amputated just below the knee. Beth doesn't have a 'disease' as such as the damage to her kidneys were caused by the complications. At the time I was more concerned about her renal function, however throughout her childhood it has been her leg that has given her problems, having numerous infections in her stump and 13 operations! She has stage 3 CKD and recently, having hoped that her GP would be allowed to check her annual as well as her 6 monthly check because she has just started the job of her dreams, she got a phone call to say her function had dropped by 10% and would need to be checked in 3 months, and they werren't happy to let her GP co all the checks until her fnction was 'stable'. We are still waiting for a copy of the letter to check the results and to see what their concerns are.

Beth takes enalapril for proteinuria - this is keeping it in check. She also takes a range of other medicines for other problems: CRPS (nerve pain in her left leg) and Raynauds in her hands. She suffers everyday with pain and the pain specialists struggle to medicate due to her CKD and wanting to preserve function for as long as possible.

When Beth transferred to the adult clinic she was told that they were unable to predict the outcome of her CKD as she has had it for so long and it has deteriorated over the past 24 years. She was also told that should she decide to have a family that any function she loses she would not get back. When she was told this she was 18/19 and was advised that the optimum time to have a baby would be in the next 10 years - I remember thinking that she hadn't finished studying and wanted to go to university!

It has been reassuring to read that the eGFR can go up as well as down and I hold onto this while we wait for the next set of blood results.

I do wonder how many other people have had CKD from birth and how long they have managed before requiring intervention?

6 Replies

  • What a lot you & your Daughter have had to deal with My hubby is on dialysis I joined things to help me to get answers i joined also on Facebook the british kidney patients page & NKF page they have a variety of different people on there young & old who offer advice this may be an option? some post stories & pictures of babies they have gone on to have after transplant etc they are both closed groups so other friends etc won't see what you put or ask maybe this might be an option for you or your daughter? There is a gp on the bkp one & she has been through dialysis & transplant herself she gives excellent advice don't know how you feel about things like facebook i'm not a huge fan but i've found some good advice along the way

    Yes the function can go up & down & can stay many years at the same level but at 10% she definately needs to be carefully monitored under nephrologist they are excellent & will do their best for her wishing you both all the best x

  • i can help you

  • i am a doctor, my name is aiden,i want to help you

  • Don't you have better things to do than troll message boards for people wth health problems? Takes all kinds, I guess.

  • Who is aidenhaven seems a bit vague!! Creepy

  • Thank you Margeys and Chin69 for being vigilant and letting Aiden know that he is out of place here.

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