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My son is a renal patient and we are taking part in the pilot for renal patient view (basically I can see his results online as soon as they're available - same time as the doctors)
My son's last appointment was on Tuesday, got his results and he's taken a bit of a downward turn. Urea of 11.6, creatinine of 225 and eGFR of 32% (for those of you that know what those mean, HCP's or kidney patients?) He's 21 years old, weighs about 10stone
Is it ok to bother the consultant to talk about this with me? I know they're very busy doctors and would hate to bother him and take up his time un-neccessarily just to allay my fears (and to stop me googling all kinds of crap) or do I just wait for them to call him in?
I would ring the consultants secretary and he will phone you back when he is free. Or if you gp is knowledgable go and see him. It's so horrible worrying about our children and has at 21he is still your baby xx I hope everything turns out ok dr google is not a mothers friend ;)
Maybe should have said he has aspergers and mild learning difficulties which is why I tend to deal with healthcare for him, he'd forget or wouldn't have a clue what was going on!
Thank you for the replies, I think I might try GP first or wait to see if the consultant contacts me before monday.
We're not due another consultation until end July, but I suspect they'll send for us before then with these results in mind.
I'm not overly concerned with poor busy doctors, but his consultant is such a lovely man and doctor, plus he covers another region as well - I'm just thinking about if all neurotic mothers were to call every 5 minutes with concerns, it would probably keep him from his job somewhat.
And in reality, I know they're keeping a close eye on him, it would be to (selfishly?) put my own mind at rest.
Hi my son is 26 and in renal failure. Like you I do it all for him. With those results I'd not hesitate to call the secretary and get her to flag them up with him or one of the team or ask your gp to look at them and see what he says. Hope he's ok.
Hi ledkr, what stage is your son on? My son is stage 3 currently, but with that eGFR it looks like he's knocking on stage 4's door. Also Hb has fallen a bit, not really low but am worrying that's the endstage anemia starting.
Sorry to hear your son is poorly too, but also nice to hear from someone who understands what we're going through, also hope your son is ok and thanks for the reply
They don't talk about stages that I've heard of. He has 8-10 % function and is on the transplant list. He has just had his first iron infusion which made him feel a bit better. He can start dyalisis at any time but he's ok without it for now. We have the hospital this afternoon. He's just had to stop work so we have been sorting out his benefits. What a faff. It is nice to know I'm not alone though.
DH is a consultant and he's always happy to talk to patients I'm less impressed when the call us at home after 10pm when he isn't on call but that's a different issue Call the secretary and leave a message and I'm sure you'll get a call back when he gets a minute.
Expat - we get very poor mobile reception where we live so the switchboard have our home phone number, as do most of his colleagues. A couple of patients have got through by pretending to be doctors and tricking the switchboard
But some of them have been given our number by other members of staff because they don't want to spend the time with the patients themselves and know DH is a softie!
On very rare occasions DH has given it to relatives of patients going through particularly horrible times, but then it's after a long time and a relationship has built up and they would never abuse that trust.
Well, I have seen my son this evening - I have not told him about the results as last time he had bad results he suffered weeks and weeks of crippling anxiety, to the point of having a heart scan his chest pains (through panic attacks) were that bad.
But today he said, I hope I get my results soon because I'm having trouble peeing.
So now I feel I have a justifiable reason to ring and bother the consultant, I am going to do it first thing in the morning.
I'm really grateful for all the replies, I've worried myself to the point of actually feeling sick today but I feel a bit better now.
Ledkr is there a renal patients/ parents of renal patients thread that I might have missed? if not should we start one?
I've not seen one yes that would be great. Dies your ds live I dependently? Is he working? Mine had to give up because his employers were absolute arses to him. We are awaiting a DLA decision (not holding our breath) in the meantime he is impoverished as has to find about a hundred a month to too up his housing benefit. He only lives in a bedsit. It won't be big enough for his kidney machine. He is very depressed ATM too my h time on his hands and no money to do anything. He's staying with me for a bit. Drs went ok. Function low but the same. Only thing is phosphate very high but it seems he's not talking his meds properly so that should change.
I'll start one Ledkr, sounds like you really need t at the moment too.
Son doesn't live independently no, but he has been living with a friend since January - which hasnt worked out so he'll be back when the contract ends in June, he's here most of the time as it is anyway!!
Surely DLA should apply for your son's situation - if not then appeal, have you got a renal social worker attached to your unit that could maybe help?