Currently on dialysis awaiting transplant

Hey there,

l'm a bit older (40), but have CKD 4 and been on and off dialysis for some time. I had an accident, lost a leg, had a Crainiotomy and a liver transplant and my kidneys never came back to life afterwards. Dialysis is difficult isn't it, just the getting there, hooked up and doing nothing for a few hours. I can sympathise.

i guess you're in Santa Barbera?I was in CA when I had the accident and lived in Cedar Sinai hospital for 4 months. When I got out my dialysis continued in Irvine. Trust me, the facilities in the US are far nicer than the UK!

Well done on what you are doing and coping with...still going to school is a great achievement, especially the way dialysis makes you feel afterwards. You mom sounds lovely offering to be your live donor. They won't even put me on the list currently as the need for donors here is massive, and the amount of people needing one to stop death means that CKD 4 have a long time on dialysis unless a relative will be OK to and donate.....then you need a team free to do the Tx!

have you maybe tried support groups? Do you have dialysis at a centre or is it a home / portable unit? If you go to your local dialysing centre I'm sure they will have a lot of leaflets or nurses will know of support groups. There were a lot in Irvine when I was there.

if you google "support groups for patients cedar sinai" and choose the 2nd result, the top section is heart Tx, but below is details on other Tx support meetings. It covers post Tx & tx candidates. There's a number for a guy called John Pappas on there...he was my clinical social worker when I was in there and a really top guy. He helped arrange for me to meet my liver donors family, which is quite rare. If you do want to try him, let me know and I'll pm you my name to mention to him.

good luck though....you're being great keeping everything going so far. It can only get better. Hope you get the good news call soon.

Hi,

I have Alports and am in end stage renal failure CKD stage 5 I have not started dialysis yet I have a kidney function of 11% but the drs from the horrible facilities here in the uk like to keep people off dialysis for as long as possible and just try to go for the transplant.  No one in my family can be a doner for me so my best friend has stepped up.  Here is the uk its a bit different from the sounds of things you wouldn't go on the transplant list at stage 4 you have to be at 10% kidney function then you go on the list even if you have a live doner.  I still work full time and look after my family (a husband and two children) its hard work and I get so tired sometimes but I am strong willed and this illness won't beat me.  Well done for continuing with your education it will give you something to focus on.

Hi,my name is Pat... I alot older than...just recently 59. I was devistated this past January to find you I am stage 4...didn't even know about stages one,two or three. I can tell you this...no matter how young or old...hearing the news of CKD will make you stop and take notice...And you feel very alone...even with family to mentally support you.

I just had a fistula put in place ten days ago...I am told it can take up to six months to mature to be used as an access point. I get my stitches out next week and i am frightened now of my future.

I would like to be able to correspond with you

Hi bswaggins, matt has already given you wonderful advice, but having had a kidney removed aged 12 and now in later years being diagnosed with Stage CKD3, I just wanted to write to and say what a wonderful positive sounding young lady you are.  I do hope you can find a support group of younger patients in a similar situation to yourself in the organisation that Matt has mentioned - a worry shared is a worry halved.  Meanwhile, lots of good luck wishes to you and your Mum, also to everyone else on this thread battling kidney disease.

Hi, I'm sorry this might be a little late but I have only been on dialysis for a couple of weeks now. I'm 18 years old too and my kidneys are failing because I have Lupus nephritis. I have been looking for someone my age to talk to also so if you want, here is my email.

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http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

hi i just read ur story quiet similar to mine i was told all of a sudden as well and had to go emergency and then was diagnosed with end stage kidney failure,  reason is unknown. i am a 22 yr old was diagnosed last yr bu had to start periotoneal dialysis straight away so you are not the only one, i feel very depressed at times too, bu like u my mom s gona be a living donor so i am very lucky in that aspect. gud luck for u r transplant. 

Hi bswaggins,

I'm 24, and was recently diagnosed with stage 3 CKD. I know with this disease, everything seems so arbitrary and scary and confusing especially when you're this young. But if you ever want to talk about anything, I wish nothing but to be able to share my experience with you and hear more about yours in return.

I am still in my early stages of grief and cannot get myself to fully wrap my mind around this terrible disease. I hope someone here is able to help me see some positivity in it.

thanks.

Hi I am 22! Only a little bit older but know exactly how you are feeling. I felt very alone the longest. I got diagnosed suddenly and out of no where at the age of 21. I have a catheter also. I know the testing can take some time but don't ever give up because there is hope I promise. I have been on dialysis for almost 10 months now and also the youngest at my center. I will be getting my transplant in a few weeks which I feel so extremely blessed. It does feel like a long a road I know but trust me don't ever give up. I know how much it sucks but as time passed by I started seeing my blessings rather than my misfortunes. Dialysis keeps us alive. And we are so lucky to have it and caught it before it was too late. I know how you feel but you are a very strong person and it will only make you even stronger. Just know you are not alone. We are both lucky to have moms that were willing to get tested for us. So even though they might not be the ones in the chair there are a lot of people going through it with you. I hope I helped a little. And you will be okay! -Kiana

hi bswaggins

i am not better than you. i am 34 years old, my Egfr is about 20%

i am currently with symptoms of fatigue, inchiness and also leg swollen.

i think more of less,i may need to start dialysis soon

I am no where near your age, but I am in So Cal and doing hemodialysis. Sounds like you're doing very well, and most importantly have a great attitude which so important, just to keep doing the things you need to do (because you will get older ) and add dialysis. You have a new family at the center, trust them.

i am 29 and been in kidney failure since i was 14 years old. Ive been trough it all. If there is one thing i can tell you is being in school dont lose your motiviation and dont let  the disease control you take contriol of it and always live life like you dont have kidney failure. At least try to.