Nephrotic Syndrome, worsening 2 years after being diagnosed
Posted , 3 users are following.
Greetings.
I'm currently 19 year old male, who has been diagnosed with nephrotic syndrome 2 years ago. I'm being treated for 2 years now, however, my condition is worsening.
Currently, I'm having open wounds on my legs which leak fluids - water, pus and blood. Those wounds appeared 8 months ago, about at the end of June. My consultant has missed out appointment in September and we will be meeting first time in 8 months in about 2 weeks.
The question is - should I ask for a change of doctors? I've had to drop out from college because of the pain in my legs due to huge open wounds and I'm getting no help whatseover, from both GP or my consultant - he has been contacted a lot of times due to my GP's inability to treat my open wounds.
For those interested, the current medicine I'm taking is:
Advagraf(Tacrolimus) 5mg
Bumetanide 6 mg
Spirolonactone 50mg
Prednisolone 10mg
Ramipril 10mg
Doxoside 8mg
Bisoprolol Fumerate 10mg
Tramadol 50mg caps for pain
Thank you in advance,
Z.
0 likes, 6 replies
eric31962 Zielenica
Posted
No sensible person could blame you for looking for help elsewhere.
Wishing you a solution,
Eric
susan42245 Zielenica
Posted
Zielenica susan42245
Posted
Quality of my life has taken complete downhill, as at first I've had to drop out from a college for a year due to very painful crambs as well as tiredness which stopped me from being functional and now I've been forced to drop college completaly as the wounds on my legs are so big and painful that I spend half of a day moaning in pain, waiting for the painkillers to kick in.
I will go that route then, filing a complaint to the GP and the consultant that takes care of me.
eric31962 Zielenica
Posted
Sorry, I should have been more explanatory.
What I meant was; say you live in London, and you have an Auntie in Cardiff or a friend in Manchester use their address and sign yourself on as a temporary patient, 'I'll be here less than six months' !
Then at least you copuld get a second opinion from a GP .
It's still a National Health Service .
I see the specialist at least every month and usually more often.
Good luck , Eric
Zielenica eric31962
Posted
Will think about doing this, though if it would work, it would only be with nephrology consultants, because the GP's have doctors who barely can recognise nephrotic syndrome. Treating it is whole another story. Today, after I showed my doctor my wounds again, he shouted "Oh Filip", ran out of the office to get hold of a nurse, who came in and they discussed what to do - they've settled on giving my antibiotics - 5th or 6th time in the last 6 months and dress my legs, this time using silver dressings!
Not much hope for me until I meet my consultant who have been avoiding me for last 8 months - got lucky and will meet him next week though.
eric31962 Zielenica
Posted
No one in the hospital knew what the problem was . Kidney unit (different area) soon treated the condition in a couple of days .
Please don't give- up, be positve and try to keep active. It may sound like an empty promise but most people go on to total recovery.
Regards, Eric