Daughter with stage 3 kidney disease

[Bebelam]

My daughter is 21 with stage 3 kidney disease. Blood pressure stared to rise for the first time this summer. She sees her kidney Doctor regularly and is seeing a new rhuematologist in a few weeks, what other specialists should she be seeing?

I feel like no one is looking at the disease and everyone is treating the complications individually. Need direction.

Barb

[Catpuss66]

Hi Barb ,I am 53, I have IGA stage 3 ckd, very little input from nephrologist, I am on 3 antihypertensives, now that BP has settled slightly discharged back to GP for yearly kidney function, just wait until stage 4 !!!! Sorry not much help she is very young, but you might fair better with rheumatologist , they are slightly less likely to rely on blood result numbers more on symptoms. Go prepared with questions and symptoms so you don"t forget.yes you will see different people for different symptoms, I am seeing orthopaedics, rheumatology , respiratory,opthalmics and nephrology, enough I think that is just for SS.

[Hidden in reply to Catpuss66]

I relate to this. I have a whole complex catalogue of things wrong that no doctor seems to pull together as being SS related.

My hypertension is assumed to be essential and I keep having to increase my BP meds as my Creatinine rises - then levels - then rises again so CKD 3a. Presently it’s back down to stage 2.

Then there’s chronic pancreatitis which my gastro doesn’t seem to connect with Sjögren’s. And suddenly now there’s fatty liver - again unrelated to SS supposedly.

Now I’m in great peripheral pain in hands and arms, feet and knees and I’m lying awake fretting about having an IM steroid injection later today in order to try and get the inflammation and resulting pain flare down. I’m worried because I’m also taking antibiotics for simmering dental infections - awaiting endodontist appointments to treat. Will steroid injection make dental infections worse?

Also I have a rare case of actinic cheilitis affecting my lower lip and am using a chemo cream for this once a month to try and burn away the precancerous cells.

My large toenail is very painful now - something going on under the nail bed so shoes and even socks hurt my toe. Fingertips burn all the time now due to advanced small fibre neuropathy.

Yet the last rheumatologist who examined me could find nothing much wrong although he recognised that my inflammation markers are high. All just Sjögren’s related he said - JUST being the operative word because I think most rheumatologists are only beginning to recognise that Sjögren’s is a multisystem disease and equally as destructive as Lupus or RA

[Devon40 in reply to Hidden]

I can relate to how you're feeling. It's all very frustrating. There's a really good Sjogrens site I'd like to recommend - The Smart Patients Team. It won't supply you with a knowledgeable doctor, but the people on it are amazingly supportive and understanding. It's made up of patients and a few patient/doctors and I've learned so much from them. It's based in the US, but so am I and I get HealthUnlocked without any problem. Good luck.

[SusieW2]

Sorry to hear your daughter's story. So anguishing when you can't fix things for your child. Not a doctor but how about trying things that support kidney function from a naturopathic perspective. I'm thinking of other ways to help a body detoxify. I've heard stories from trusted people about herbs, vitamins, probiotics, essential oils and homeopathic remedies that have significantly helped peoples kidney functioning while they waited for insurance to kick-in or the like. Though I'm dealing mostly with Sjogrens symptoms, they have really helped me live more comfortably.

This Dr. Jenna Henderson seems to be big on the internet. She has a kidney disease herself. You need to sign up to read the full articles. She is probably fishing for consultations but there seems to be a lot on her site. holistic-kidney.com/categor... . There are a lot of other sites dealing with nutrition and Kidneys. Make sure the info. comes from a trustworthy organization or doctor. Best wishes.