Hi everyone. My son is 23 and only 4 months ago we learned he had CKD and his gfr was 20. Last week we were told it is now just 10. Aside from occasional tiredness however he is feeling totally fine. No other symptoms of kidney failure at all. Is this normal ?
He wants to delay dialysis as long as possible as he is starting his first full time job next week since graduating University in July. He is very worried his new employers may retract the job offer when they learn he has to do dialysis and ultimately need a transplant in the next few months.
The doctors he has seen have all been quite alarmist and negative, but haven’t at any time offered him counselling or support for his age group which I think is appalling. Even when we google stage 5 CKD all we find is info about or stories involving elderly patients. There must be some specialist support and advice out there for young, fit and otherwise healthy young adults in the final stages of kidney failure surely ?
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mrsm1
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Like your son I went from effect of 22 to 12 in a short time.
I started on pd then had to start hd due to infections.
I decided to opt for home hd, after 2 months changed to nocturnal dialysis every other day for 7-8 hours overnight.
Outcomes for this form of dialysis are as good as a transplant, although I will still go for a transplant if one comes along.
Like your son I had no symptoms except for being a little tired at the end of the working day.
I still work full time even though I an nearly 72.
Am employer has to make reasonable adjustments under the disability at work act. My employer had been totally supportive.
Your son needs to speak with your renal team who should be able to give advice to help your son make a decision that is right for him.
Is he on the transplant list yet? This does take a short while after relevant tests are carried out to ensure he is suitable for transplant. Is there a family member that could offer a live transplant, this could be the best way forward.
Your local renal team will be able to help you through all the various options available.
Best wishes for your son and tell him this is a difficult time but can be managed to give him as normal a life as possible.
Hi I'm 23 and my GFR is now below 10. It was 20 last year and at that time I wasn't on dialysis. Peritoneal dialysis sounded horrific to me- the idea of a tube sticking out me all the time was gross and much like your son- I felt fine.
I begged my renal team to hold off on dialysis because I was scared- doctors tend to talk about the worst possible outcomes because theres always that chance that something terrible could happen and it's their job to make sure we're prepared. I wish I didn't wait. My GFR dropped suddenly, I had to be admitted to ICU at my local hospital and eventually was put on emergency haemodialysis. A tunnelled line is genuinely the thing of nightmares and having it put in/taking out were both very traumatic.
I get the concern about his job, but I went back to work 2 weeks ago (I'm on peritoneal dialysis that I do at home 3 times a day) and have had no issues. I do APD (manual) and I hang a bag in the car on my lunch break as it only takes about 30 minutes, or he could do CAPD (on a machine) that happens while he sleeps. As someone else mentioned he's not going to lose his job for dialysis, but the recovery period for transplant may prove an issue is hes on probation. Its tricky, but I would say his health comes first and while he can try for other jobs later (we're still young) he won't have an infinite supply of kidneys/dialysis options.
Does his hospital have any kind of renal centre? I am at the Lister in Stevenage and they have a renal network of 6/7 hospitals in the area. One of their many services is a renal counsellor (I tried that and personally it wasn't for me). She is not there to talk about the CKD but more your sons feelings and general outlook although once again, she's not aimed at young people. Im under 3 different hospitals (i have an underlying condition that causes my CKD) and I've never encountered someone aimed at young people.
I'm also not qualified in any way shape or form, but I don't mind talking to him if that would help? I am on peritoneal dialysis for the third time (first time my GFR came back up and I had no need to dialyse, second flipped up into my liver and this one) and have had heamodialysis for 3 months so although I'm not a qualified counsellor I've been through pretty much all of it and would happily answer any questions.
Yes, it is possible. We were in exact same situation 6 months ago. My wife (28) she was diagnosed with IGA nephropathy and when we found out the gfr was 7. It was too late and I couldn't believe what doctor was saying about her health and after months I had to agree with what they said. The renal team in Cambridge is one of the best I would say and yes it's the wonderful NHS. Till today I still have some hope that she will get well as it was her immune system which damaged her kidneys and hopes it will get reversed. Well, this will be a miracle then. She is now on a transplant waiting list.
You will need to do the following things:
- Stay positive and make your mind up.
- Kidney disease is a silent killer and it affects any age group.
- Talk to renal nurse and get the councilor details. They are the main point of contact for any query.
- As your son is due to start his full-time job that's good news. However, I believe keeping everyone in loop will help a lot. My wife had to inform her employer and they did excellent adjustments to working hours etc. Talk to the line manager.
This disease is getting very common and there is no shame.
- As others have already said, I will ready to guide him where required. But most important you will need to get familiar with this disease, dialysis options and the last The Transplant.
- Expect that your son will be going through a number of appointments in few weeks time so keep some time for that not to make any plans.
- Doctors are not there to say any negative things, they say whatever they see in the reports such as biopsy and other blood reports.
- Dietwise limit the dairy intake and low salt. Whats the current BP of your son? My wifes BP was around 200/180.
Hi mrsm1! Welcome to our Health Unlocked community! I'm sure you'll be able to connect with other younger people going through the same things as your son. I am 66 years young and have been on in center hemodialysis for almost 2 years now. We have had a couple of younger people at our center. There is wonderful support in a group dialysis setting since you have other patients and staff to talk to about all of your experiences and concerns, as well as the nephrologist and social worker and renal dietitian. One young mother was previously working as an EMT and is now still able to work as a dispatcher for the ambulance squad and she does hemodialysis at her home. So that is an option as well as peritoneal dialysis that can be done either during the day or overnight in the comfort of your home. I would also really recommend asking his nephrologist to see if he is a candidate for a kidney transplant. I've been on the transplant list since the same month I started dialysis. I was able to delay dialysis even with a gfr of 5 since I didn't exhibit many of the symptoms, but it is to his advantage to be truthful with his new employer, since he may be able to work at least part-time while carrying on a dialysis schedule. I worked part-time myself as a caregiver for elderly clients until I developed cardiomyopathy last fall, which I have recovered from. I hope I may be able to work again after I get a kidney transplant. Life doesn't stop when you have to start dialysis, but it does change. It helps to think of it as a part-time job to feel healthier. Good luck and take care!
Thank you everyone for your kind and helpful comments. Both my son and I are really grateful for your support.
I am about to start tests along with my husband (who is not Matts biological father) to see if we are suitable donors. We would like him to have a pre-emotive transplant if this is possible and avoid dialysis. He has been told he won’t becable to dialysise at home or overnight because he is moving into rented accom and they won’t allow the plumbing adaptations his doctors told him are necessary. Also - they told him that to do the dialysis while he sleeps he needs to have someone with him overnight which again is not possible as he will be living on his own. Thank you everyone
I got to 7.5% before I started to feel unwell. I managed to delay dialysis for 2 and 1/2 years and kept going with 10% for that long. I'm now sadly at 4% not yet started dialysis but at the moment the doctors are trying one last attempt to sort things out with diuretics.
Your son can keep off dialysis if his other numbers are good and he follows the doctors instructions regarding restrictions etc.
I was born with my condition but didn't get diagnosed until I was 20 and only had 19% and I kept that for 18years so it can be done. Because most people are older they do have other health issues. So static don't look good either. Have you or your sons dad considered being a live donor as this would be tour sons best option.
What hospital does your son go to? Oxford have a young adults group. Counselling is offered you need to ask for it.
Get your son to join the forum or message me privately if he would like to chat as it is hard when your young beubf surrounded by older people
Thank you Charlene - and everybody. I am currently being tested to be a live donor for Matt and actually Oxford is where the transplant will be done. Your comments and offer are very kind
Get your son to be added to the Oxford young adult group or when your there ask to see Daley Cross it runs the the young adult group. Who is your transplant co-orinadtor and renal consultant? It's a hard process being tested for a live donor it has its highs and lows. I wish you all the luck in the world.
No I’m in Brighton and my son is currently living in Reading so we have been told it will all be done at Oxford.
It’s early days in the testing and I’m waiting for a kidney scan. My bloods have all been tested and I’m a type match so we are hopeful that tissue type and cross match will be good too. He’s currently on 8% GFR and will be having his op for the PD catheter fitting shortly
Oh wow I'm surprised he's having a PD fitted as you said he was feeling ok. I know his bloods probably arent that great and thats why they are pisbjng for dialysis to start. But with you having the tests to be a donor it's a shame they can't get him striaght to transplant.
I really do hope it all works out for you all.
Please keep us posted. Oxford is a fantastic hospital
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