New diagnosis

[1421Darcey]

Hi

67 year old healthy mum to a daughter with special needs who lives at home Appears to be HSP Booked for a kidney biopsy to confirm what type

Just started Pred at 40mgs and a diuretic to shift

the fluid Kidney function is good but protein and blood present Under a renal consultant who feels I do don’t need a reumatolagist yet

Terrified of this disease

[eh66]

I have was briefly under the care of a rheumatology team transferred me once a diagnosis was confirmed. I am now under a specialist Vasculitis team who work within the renal unit. I have really happy with care I have been getting. I have had 2 kidney biopsies in last 6 months without complications. It is more the lying on your back for 6 hours after op and 2 weeks without any lifting that is the hassle. Hopefully your consultant will have a better idea how to treat the specific of your condition. I am back on my bike and ridden 1800miles this year, and feel really healthy again so there is plenty of hope. Good luck.

[Mooka]

Welcome to the club no one wants to be in. A lot of vasculitis doctors are renal doctors. It’s more important that the are specialists in your disease. As eh66 has said the most uncomfortable but if the kidney biopsy is laying on your back for hours. Good luck and let us know how you get on.

[1421Darcey in reply to Mooka]

Thank you so much for your encouraging kind reply I feel feel I’m on a roller coaster and can’t get off I guess one day at a time Good to hear your biopsy went well Still in my dressing gown at 11am !! Think I will put a face pack on Step 1 onwards and upwards Thank you once again

[Main1234]

Does your daughter have a support worker ? You may like to inform the department before the procedure that your daughter has special needs and that extra time is taken to explain the procedure to her and your self. Look after yourself unfortunately you are in for the long haul.

[1421Darcey in reply to Main1234]

Hi Thank you for replying Yes we do have full support for our daughter Husband works from home and social services are on our side!! Amazing!!

She has pas who are helping so she doesn’t have to come with me

Many thanks for your support