Hi, I'm Indajen.

[Indajen]

Hi all. I've been reading the site for a few months now and thought I'd better introduce myself:

I live in West London , the UK. I was diagnosed with PKD in 2010, at the age of 56, subsequent to a routine blood test. I guess that's lucky and unlucky at the same time. I wasn't overly surprised, my younger sister has PKD and we inherited it from our mother.

eGFR had dropped to ~10 by last Christmas (2016), so in agreement with my renal nurse, I was booked in to have a PD catheter installed early January 2017. After healing and 1-on-1 training I began CAPD on 8th Feb 2017.

Apart from a period of getting used to the regime and some initial trouble with drain-pain, things are now proceeding well. I am on 1 x Yellow, 1 x Blue and 1 x Purple bags daily and for the most part feel fine and eat and drink whatever I feel like, although my appetite is somewhat depressed. Luckily, I am recently retired, so I do not have the burden of juggling the schedule with work.

My biggest vice is a large latte and a plain croissant for breakfast at the Italian cafe around the corner. Wild man!

All my treatment is provided by the NHS, about which I only have good things to say. I am being treated at one of London's principle renal departments. I have been on the transplant list for ~650 days. As my transplant consultant says, "we hope to see you here very soon...".

All the best to the other members of the board, let's keep our fingers crossed for each other.

[iolaire]

Welcome to the group. How long is the normal wait?  Here in the US I waited almost six years but I was able to get listed early so only three and a half years on dialysis.

[Charlie B53]

Welcome to the IHD 'Family'!

I' glad you had a relatively gentle transition into Dialysis without too much trouble.  I myself started on PD very early and again most of my minor problems were learning to get used to the regimen.

I have to admit that I am not familiar with the solution colors blue.  Here in the USA we use Yellow, Green, Red, and my Purple was the 'Ico'. The solutions are 1 1/2%, 2 1//2%, 4%, not sure what the Ico% is as it is a different type of sugar.  Worked well for me.

Sadly, after 3 1/2 years I must have failed to exercise enough caution one night during my set-up and 'touched' a fitting making a connection.  The resulting infection over the next 3 months caused me to lose my PD Cath and have a Hemo neck cath installed.  That was early last Dec.  My fistula was done and we are still waiting for it to fully mature.

I've considered returning to PD, the diet and fluid freedoms are great, but I am finding I rather like the 4 hours three times a week and having all the rest of the day, off days, and ALL Evenings, weekends FREE!!

Dialysis is a trade off.  What works Best for you is what is Right for you.  Don't be too quick to let your Dr make all the decisions for you.

We are all here for each other.  Any questions or problems feel free to ask any time.

Looking forward to hearing more from you.

Take Care,

Charlie B53

[cassandra]

Welcome to the site Indajen

   


Take care, Cas

[Indajen]

Welcome to the group. How long is the normal wait?  Here in the US I waited almost six years but I was able to get listed early so only three and a half years on dialysis.

Hi and thanks, iolaire. I'm told that the average wait is approximately 1000 days...we shall see 

Welcome to the IHD 'Family'!

I' glad you had a relatively gentle transition into Dialysis without too much trouble.  I myself started on PD very early and again most of my minor problems were learning to get used to the regimen.

I have to admit that I am not familiar with the solution colors blue.  Here in the USA we use Yellow, Green, Red, and my Purple was the 'Ico'. The solutions are 1 1/2%, 2 1//2%, 4%, not sure what the Ico% is as it is a different type of sugar.  Worked well for me.

Sadly, after 3 1/2 years I must have failed to exercise enough caution one night during my set-up and 'touched' a fitting making a connection.  The resulting infection over the next 3 months caused me to lose my PD Cath and have a Hemo neck cath installed.  That was early last Dec.  My fistula was done and we are still waiting for it to fully mature.

I've considered returning to PD, the diet and fluid freedoms are great, but I am finding I rather like the 4 hours three times a week and having all the rest of the day, off days, and ALL Evenings, weekends FREE!!

Dialysis is a trade off.  What works Best for you is what is Right for you.  Don't be too quick to let your Dr make all the decisions for you.

We are all here for each other.  Any questions or problems feel free to ask any time.

Looking forward to hearing more from you.

Take Care,

Charlie B53

Hi and thanks to you too Charlie. The blue is Nutrineal, which contains amino acids to facilitate protein manufacture in the body (I think). Sorry to hear about your mishap, it's good that you've come to an accommodation with haemo.

[kristina]

Hi all. I've been reading the site for a few months now and thought I'd better introduce myself:

I live in West London , the UK. I was diagnosed with PKD in 2010, at the age of 56, subsequent to a routine blood test. I guess that's lucky and unlucky at the same time. I wasn't overly surprised, my younger sister has PKD and we inherited it from our mother.

eGFR had dropped to ~10 by last Christmas (2016), so in agreement with my renal nurse, I was booked in to have a PD catheter installed early January 2017. After healing and 1-on-1 training I began CAPD on 8th Feb 2017.

Apart from a period of getting used to the regime and some initial trouble with drain-pain, things are now proceeding well. I am on 1 x Yellow, 1 x Blue and 1 x Purple bags daily and for the most part feel fine and eat and drink whatever I feel like, although my appetite is somewhat depressed. Luckily, I am recently retired, so I do not have the burden of juggling the schedule with work.

My biggest vice is a large latte and a plain croissant for breakfast at the Italian cafe around the corner. Wild man!

All my treatment is provided by the NHS, about which I only have good things to say. I am being treated at one of London's principle renal departments. I have been on the transplant list for ~650 days. As my transplant consultant says, "we hope to see you here very soon...".

All the best to the other members of the board, let's keep our fingers crossed for each other.

Hello Indajen and welcome to IHD,
I am also a Londoner and like you, I am also on the transplant waiting-list. My consultant also told me that he hopes to see me soon in the transplant-section. Perhaps we both have seen the same consultant? I am on hemo and use a dialysis-center.
Welcome again and best wishes from Kristina.