Kidney Patient Guide

Thanks Mandy. Any knowledge you have would be great. You can PM if you want. Will be helpfull for my sister as she will travel up and down when she can. Thanks.

Congratulations Mandy.

It is at Cambridge Addenbrookes. Only Cambridge and Manchester can do the surgery for EPS in the UK.

Going into hospital next week for an operation for my EPS. Will try to avoid the juniors where possible.

I was having problems with my HB over the last past year or so and needing regular transfusions. Mine is fairly stable now but if my iron goes down the HB will drop and I will notice immediately. My situation is different though, low iron level, ferritin level is very high (more than your highest) b...

There are people who have been dialysing a much longer time so averages dont mean much plus alot of these statistics include data from years back when dialysis was not as advanced as today. You can do dialysis a long time, most patients actual die from other problems. http://www.ncbi.nlm.nih.gov/pub...

A thought i had about this is ususally the kidneys of people with long term renal failure are atrophic so how well can a kidney in this state be rebuilt? They have already found the rebuilt kidneys dont work as well so really anyway. This treatment may be limited to people who have had renal failure...

I think for us Alports Patients the best bet is the wearable artifical kidney being developed by Blood Purification Technologies or even better the UCSF implantable artificial kidney being developed by Dr Shuv Roy and his team. I would think and hope both these devices will be available long before ...

There isnt AFAIK.

I do however remember reading in the paper quite recently that something similar has been launched for heart surgery patients. http://www.independent.co.uk/life-style ... 38327.html

First time I have ever seen EPS mentioned in a newspaper. 'The condition, which is a complication of kidney dialysis, has baffled doctors for years and treatment is still evolving. The syndrome leaves patients unable to digest their food, leading to severe ­malnutrition and inevitable death. Manches...

Sorry for delay - late one last night... Right, the waterproof dressings James Cook UH use are Smith & Nephew IV3000 Frame Delivery (10cmx20cm) Hope that helps. These are the dressings used to cover the exit site. Still wise to use a waterproof cover like tegaderm on top of the exit site dressi...

I used to find I didnt drain completely unless I stood up so I used to make sure I was awake before the final drain ended so I could make sure it fully drained.

I have used the one from Countrywide Supplies and it works well.

I currently use the http://www.centrallineholder.com/ cover and tegaderm to cover the exit site.

Some good info on the types here: http://www.kidneyresearchuk.org/health/ ... ndrome.php

Would have liked to attend this but had dialysis on Saturday. It is a shame they didnt do this on a Sunday when more people would have a chance of attending. Sounds like an interesting day was had. I was most interested in finding out if I could pass this on in the future. Second was how it would ef...

At least your on the list and have a chance of having one .... plenty of us who arent on the list and will never have one.