Hello everyone

[romanyscarlett]

Hi folks,

I'm new here so I thought I'd better introduce myself. My name is Romany, I'm 25 and I live in England. Oh and I'm a girl.

I was diagnosed with PKD when I was 19 and it stems from a gene mutation rather than being hereditary as neither of my parents has PKD and there is no history of it in my family.

I had my right kidney removed at the end of April this year. My left kidney managed to stay strong and hover at around 11% functioning for a couple of weeks after the operation but then it rapidly decreased to 4% which is where I am now. I'm currently waiting for confirmation of the date on which I will have my left kidney removed and I'm assuming it will be some time in August.

I attempted my first dialysis session last Thursday but my fistula blew and I was left with a lovely bruise. We tried again on Saturday and successfully managed 2 hours using one needle. On Monday and Wednesday I had 3 hours with one needle and everything seemed to be going very well and I was feeling quite positive about the whole situation. However last night the nurses tried me on a thicker needle and after 10 minutes I was in agony and it transpired that my fistula had blown again so I was sent home with an ice pack and told to come back on Monday. I know this is very common when people start dialysis for the first time so I'm sure that you'll all have had similar or worse experiences.

I think that's everything. If I've left out any information that I should have included please let me know and I'll update as quickly as possible!

[galvo]

G'day Romany and , You're going through a bloody lousy time and, yet, you are sounding so positive. Good on you! Your fistula will come good. Stick around here. You've joined a great family and you'll learn a lot and contribute a lot. Great to meet you.

[looneytunes]

Hi Romany and welcome to IHD.  I love your name.   

You've found a great place to ask your questions.  I hope you'll keep coming back.   

[RichardMEL]

Welcome Romany! Sorry you have to deal with all of this stuff at such a relative young age. I hope your dialysis can soon settle down int a routine that is positive for you and helps you out.

Look forward to having you here!

 

RichardMEL, Moderator

[lou]

Hey Romany lovely to meet you!!  I am 29 and also live in England! I'm in Exeter in the South West, where are you?

I spent 6 months on dialysis and then was incredibly luckily to get the call. Had transplant in March this year and so far (fingers crossed!) going well. Really hope your doing ok, know how horrible the start of the dreaded d is. It will get easier i promise. Please let us know how its going, there are some great people on here who can answer almost any question you can think of! x x 

[Bajanne]

Welcome to our community!  An a special welcome from one born under the Union Jack (Barbados, now living in the British Virgin Islands)  This is an excellent place for information and support, as you will find.  Please think of us as your family  - you will soon find how genuine that is.  IHD is a group of wonderfully caring and sharing people.  Just keep reading and keep posting, so we will know how you are doing.
Looking forward to hearing from you,



Bajanne, Moderator

[peleroja]

Welcome to the group, Romany.  Sorry to hear about your dialysis not going so well.  Have you considered PD?  After the initial month or so of manual exchanges, you can graduate to the cycler at night, and with Extraneal you will have no midday exchanges.  Best thing I ever did for me!

[romanyscarlett]

Firstly, thank you all for a warm welcome and your kind words.

Secondly, to answer a couple of the questions, in response to lou - I live in Bournemouth.  For those of you not familiar with the town, it's on the south coast of England.

And to answer the question of PD by peleroja, I had considered it but ruled it out. I can't really describe my reasonings without sounding slightly like a bit of a lunatic but the main reason was that I didn't want a tube inserted into my body.  The thought of it makes me go weak at the knees and feel slightly ill.  I have a phobia of needles and routine blood tests would usually involve tears and tantrums so the decision to choose HD wasn't easy (not that I expect it to have been easy for anyone else either!).  I have undergone hypnotherapy to try and get over my fear and it has worked wonders.  I can now be around needles without screaming and getting upset.  I was also told recently that PD may not be possible for me due to having both my polycystic kidneys removed as there may be too much scarring to the area to consider it.

[Des]

Hi, and welcome.

your history is very similar to mine..... I have PKD, had my left kidney removed in Jan2010, starded HD in April because the remaining kidney's function dropped. 

so.... here we are on dialysis.

I am a bit negative at the moment so... I don't have anything nice to say about dialysis but I can say that you have come to the best place in the whole wide world for advise.  

[okarol]

  Hi romanyscarlett,
My daughter started hemo at 18 years old. She had a chest catheter though, and used that while her fistula matured, 6 months later. She actually had been feeling so bad the dialysis helped her overall health improve right away. She had abdominal surgery (bladder augmentation) so they advised against PD, but now that she's rejecting her transplant the doctor says he can view her peritoneum and see if it looks unscarred and able to handle PD.
I hope you share your experiences and let us know if you need any help or info. Welcome!

okarol/admin

[Riki]

Hi romanyscarlett

I'm in the beginnings of HD with a fistula as well.  I've been using my fistula since March.  Before that I had a central line for dialysis.  My fistula blew the first time they took blood from it.  Painful, holy crap, but it's a learning experience, because then you know what it feels like when it's wrong.  It might take a few treatments, but once it gets going, it'll go like gangbusters.  The nurses can get the needles in no problem now