Nephrotic Syndrome Minimal Change

Dear Linzi,

                   Sorry to hear you have this problem and it is undoubtedly a load of worry.Please delete this note as I should not wish your daughter to read it.

However in developed countries people don't usually die from this condition but lead normal useful lives. Have families and jobs etc. If you are advised to accept dialysis, from your Nephrologist then please, do not hesitate. Accept it,as it is a good treatment and will remove any strain and pressure on your daughter's kidney's.The machines;frightening as it may be, really have a great effect on the health.  Have a really healthy diet, lots of info on internet. Don't be conned into herb or chemical treatments, they will only empty your pockets and do nothing to help. Ask if you can go into the hospital and visit the unit, so your daughter knows what to expect. She is an adult but with your help can get through this with a sense of humour and come out the other side better and more experienced. The medical services are really very good and do the best for their patients.

I won't bore you with the details, but I also carry this condition and was on dialysis for 5, months. I volunteer for a local charity and have seen this illness from several sides.

                                        Thinking of you, good luck both, E 

Dear Linzi,

                 Please do not allow your daughter to see this please, I cannot guarantee that your child's outcome will be the same.

                   I'm no chicken I have a daughter who is 50, almost ! As a child I was a very poor runner and swimmer but apart from a few matters I had a fairly normal childhood and teenage years. The only problem I had was with colds and influenza I had something or several at almost every week. I made myself go to work just by sheer will power.

When I retired in 2013, I had almost constant diarrhea and vomiting for no apparent reason. I took to washing -up with disinfectant and scrubbing the kitchen every day. By 2014 it got much worse and the G.P.'s were utterly useless. My blood pressure was really silly with almost unbelievable results like 350+ / 250 ! A young locum sent me to the local hospital for tests. They refused to let me leave, I got worse, until I was confined to a hospital bed.

Eventually I was sent to a large teaching hospital, first of all they checked out my heart which was supposed to be enlarged according to the G.P's. Their verdict, throw the rest keep the heart ! Kidneys functioning at less than 12% so I was on emergency dialysis. They did not know why my kidneys had failed but there was no treatment but dialysis, my only question, how the hell do I get out of this ? There was no way out but I just got used to the hospital life and I was there for 4, months, so I was in the hospitals from July until October 2014. In November I was travelling to the hospital every other day by minibus, ten mile journey taking 4,hours, not great fun. The machine kept breaking down and an alarm and lights going off. The main sister who knew me well said, 'I'm going to have a doctor speak to you . After about an hour a doctor came into the unit and he asked me 'could you do something for me , could you go around every dialysis ward, I need to ask you some questions ? (there are three, looking after about 150 - 200 patients) So I did as I was asked and went back to my bed and machine. The doctor and Sister came back and pulled the curtains around us. The doctor then asked me, 'Thinking strictly about the word patient, who do you think the most healthy patient is on these wards' 'Obviously I had to say, "me" because most of the patents were obviously really ill. ? At this point I bit through my left hand to prevent myself from sobbing out loud. The sister then added, 'I've known for some weeks that your kidneys were functioning but I dare not say anything because I'm not a doctor and I didn't want to give you any false hope.'! 'That's why the machines stopped working because your kidneys were doing it all.'

I can tell you that spontaneous recovery is known to happen amongst some Nephrotic Syndrome victims  

As I said to you, please take the dialysis don't be afraid, one can have a fitting into the arm easier than using the neck which I had. There is much else I could write, so please get to your appointments, have the best diet you can and trust in the science of medicine. It's not perfect and is in its infancy but people are doing what they can and they deserve our respect and support. Please don't give up hope, they call me, 'the man who stood up and walked away',

                                                                 God bless, Eric F.

Hi linzi I'm sorry to hear what your daughter is going threw but I'm actually a perfect example for you to turn to I was diagnosed with nephrotic syndrome a week before my 9th birthday.. It first began I couldn't wee and was throwing up blood.. I was rushed to hospital and it was very touch and go .. for the next 5 years I would relapse at least twice a week I was put on loads of different medication and different types.of steroids but the outcome is I'm now 28 I have 2 beautiful children and have not relapsed or had any issues since.. I was put on a strict diet by my parents of healthy eating plenty of cranbury and graph fruit to flush out the kidneys.. stay positive all will work out in the end