Nearly into Stage 4

[madonbrew]

I have recently had rituximab infusions for my kidney failure. ..it's an autoimmune disease. I'm 38 and my eGFR had been dropping approximately 12% per year over a few years.It then hovered between 38-44% and in 6months has dropped down to 34%. The doctors were hoping the rituximab would help but it appears not to have at the moment. I'm nearly into stage 4 now. It's a bit scary now cos they've tried everything possible to help. Not sure I'll be considered for a transplant as my body keeps attacking itself. Feels a bit weird! Also got to have iron infusion as I've become anemic. Hmmm...

[kithsirid]

im 72 my gfr is 20 but im doing well u need good doctors who will not frighten you,also i had a heart attack few months ago,wish you good health

[madonbrew in reply to kithsirid]

Thank you kithisrid! That sounds hopeful that you are still doing well @ 20! How long have you had kidney failure?

This morning I've woken up covered in bruises on my legs...I guess that my be due to the anemia. Hopefully an iron infusion will sort that out!

I have an amazing consultant in Southampton who has known me since I was 19...now 38. She's actually a gastroenterologist. ...I also have pancreatitis. ...it's all an autoimmune disease,diabetes,osteopenia. But she sorted my rituximab infusions for my kidneys. I see the Dr in Poole for my kidneys but has been a bit hit&miss who i end up seeing. I saw the lovely consultant this time so I'm hoping he might now sort me out.

Have a lovely day &enjoy the weather!

Dee

[kithsirid in reply to madonbrew]

thank u for the long reply,i have this CKD problem over last 5 years , at the start my gfr was 51 but now 20,

SERUM CREATININE LEVEL IS NOT enough to say u have ckd, if lot of proteins are present your kidneys are really damaged,never mind , do not take high potassium foods , do not eat red meat , drink lots of water every day,

Are u diabetic ?

always use less salt .

hope you get well soon

[gilders]

Madonbrew, don't rule out transplant. I'm down to eGFR14 and my kidneys have been "attacked" by an autuimmune disease (Wegener's Granulomatosis).

In my NHS area, yoj can have transplant so long as you have been in remission (from your autoimmune disease) for a minimum of 12 months.

I am currently in the process of a living donor transplant. If I was to go on to deceased donor list, I don't think having an autoimmune disease puts you at a disadvantage on the list. It mainly comes down to who's the best match and how long you've been on the list.

[madonbrew in reply to gilders]

Thanks for that encouagement Gilders! Thats the trouble. ..I'm not sure my autoimmune bit will go into remission 😕 But I am a little way from this yet so will cross these bridges when i need to.

Wow,how far through your transplant process are you? I pray it is a success operation &that you will have many more amazing years of life to live.

[gilders in reply to madonbrew]

It's hard to say how long along I am with transplant. They never gave me an actual list of what tests were required from me and my dad (donor). My dad has had loads of tests. I've not had many organised by transplant team, but they maybe using tests that I've had for other. It was about a year ago when this whole transplant process began. I think it's taking a long time due to all my other medical issues and the fact that my eGFR is relatively good (14).

[madonbrew]

Hi Gliders, sorry I just realised I didn't reply to your message! How are you doing now in regards to the transplant? Had it moved forward at all?

My eGFR has dropped some more...down to 31%. I think the reality is hitting me at the moment of probably ending up on dialisys or possibly getting a transplant. I know it's different for everybody, but know my kidney function is deteriorating at a fairly speedy pace. It's just trying to get my head around it.

Please let me know how you are doing!

Denise