Renal PatientView Plus a Cheerfull note

[Tony-LakeDistrict]

I see a specialist at the Royal Preston renal dept., I have Microscopic polyangiitis affecting my kidneys, I have found very helpfull the fact that on a Wednesday I see my specialist & have my bloods taken & by friday lunch, I can go onto the internet, log on to Renal PatientView & see all my blood results, I have found over the last 4 years, watching my results coming into line, most reassuring. I believe this service is available from most large hospitals with a renal dept.

You can log onto Renal patientview, for more information.

By the way just a cheerfull note, to anyone alarmed by their low percentage kidney function, at the start of their treatment. I started with only 14% kidney function, & now for the last 7 months have 48%

[Jann]

Hi Tony,

I have WG. I am in Lancaster and also attend the the renal dept at Preston. I would like to ask you some questions about your experinces there if that is alright with you. Would you be OK if I messaged you privately on Facebook or e-mail please?

Jann

[shanat19]

I also use Renal Patient View (RPV). I have thanks to WG, kidney damage, reduced kidney function, stage 3 CKD - not as bad a lot of people, I know, but still something extra to worry about. I have my kidney function regularly monitored by both GP and the Renal Unit at Derriford Hospital here in Plymouth, the results plus any letters being uploaded onto RPV for me to view.

Its very useful. However a word of caution. I feel that this easy to view data could be misinterpreted by those, such as me, who have no experience in how to read such results or noticeable trends. A drop off in kidney function, which could have people clutching their hair in despair, could be due to age or some other occurrence, which someone trained or used to dealing regularly with such data would shrug off as a minor blip.

But any link between patient and doctor must be regarded as a positive.

[Jackie29]

Hello Tony, I too have MPA with stage 4 CKD and see my results on renal patient view too, a fantastic service. I live in Bristol and go to Southmead hospital. I am amazed at how much kidney function you have managed to achieve. When I was rushed to hospital (2009) mine was 10% and I am hoovering around 19%, any ideas on how to improve my kidney function would be most welcome! Good for you and it is indeed great news! My consultant does not expect me to ever achieve better then 19%, think my age may be against me too. I hope your kidneys continue to improve for you!

Jackie

[Essex-jill in reply to Jackie29]

Hello Jackie, I have WG and stage 4 renal failure, and will at some stage need a transplant. My consultant at Addenbrookes helps maintain what little function I have by prescribing, ant hypertensives, diuretics, long term antibiotics such as Trimethoprin to help reduce the frequent infections I experience and Allopurinol to prevent the re occurrence of kidney stones. I also inject myself weekly with Epo to help stimulate the production of red blood cells, ( to improve the anaemia that iron tablets alone do not ) I also take calcium and vitamin D to help reduce loss of bone density.

The way I help myself is not to drink alcohol, but plenty of fluids daily and to try to eat a healthy diet.

I hope this helps you in some way.

Jill

[Jackie29]

Hello Jill many thanks for your message, I do all that you do although I only inject fortnightly now and I don't have the ant hypertensives diuretics, never even heard on them. I never drink alcohol either and always drinks gallons and recently was encouraged to eat more healthily again - I was not able to have any fruit of veg for a long, long time. I have remained at 18 - 20% function for nearly two years so doing ok just wondered if there was anything extra I could do to help increase that percentage. Really appreciate your support and advice and I hope you remain stable, or improve, for a long time! I am very lucky that four people are offering to be tested to be a living donor and I pray that when the day comes one of them will be a good match. Take care and thanks again!

Jackie