Introducing an English Patient

[albiecl]

Hi and thanks for reading my story. I am a 35 years old lady with a husband and 4 year old daughter living in London, England. 

I have been on Dialysis for just over 1 year.  My kidneys started to fail as a result of Lupus.  I had my daughter in August 2006 and all the way through my pregnancy I had protein in my urine. All the doctors told me that it was a common thing for women of an Afro Caribbean ethnicity and that it would probably just go away once the baby came out.  Unfortunately it didn't and all indicators pointed to there being a kidney issue.  I remember when the GP told me, I of course was alarmed as up to that point it had not crossed my mind that anything serious could be wrong, but the words that stick in my mind are "its not like its cancer" - what a thing to say!  anyway I was referred to the Nephrologist and he seemed to think it was related to Phenytoin induced Lupus and that when I came off the Phenytoin it would go away.  Unfortunately I came off the Phenytoin in June 2007 but it was didn't go away and I was beginning to feel sicker and sicker to the point that I would come home from work in the summer freezing and go straight to bed.  To cut a long story short I went to see the Nephrologist again and later on that day he called me back and said that I would need to go into hospital.
 
They put me on 60 MG Intravenous Methylpredisolone to really hit the lupus and I was on that for 3 days and then my 2.5 year steroid life began.
Initially my kidney functhion started to get better and we all through that they had caught it before the lupus attacked me too much but unfortunately the next year my creatinine started to rise again and it was downhill from there.  Less than 1 year later (August 2009) I began Haemodialysis. 

I am now a Twilight patient and I hate it.  The staff do not care that I work and ned to be up after 7 the following morning and generally turn around very slowly, meaning that I get home nearly 11pm or after 11pm.  So that s my story and that is why I hate dialysis! 

[Razman]

   It's great that you joined.  Lots of people to share with and get support from others who understand.   Please stay in touch.   

[galvo]

G'day albied and  . You've come to a great spot where you'll find both empathy and friendship.

[albiecl]

Thanks so much, it looks like a great site 

[Sax-O-Trix]

  

[billybags]

albiecl, Welcome to the site, I live in Nottingham and there are lots of Brits on here.You will find loads of information and help.

[lou]

Lovely to meet you  I am in exeter, devon!
I am 30yrs old and after 6 months on dialysis last year was lucky enough to get the phonecall and a transplant in march. Really hope you are doing ok, there are so many lovely people on this site - it has really helped me over the last year. Where about in london are you?

[albiecl]

Thank you, not doing so bad but desperate to get out of dialysis and feel like I can start living my life again. My sister is being worked up to be my kidney donor but its all going abit slow due to me having had lots of weight to lose.  Not too far off my weight now but these last kgs are very hard.
I live in Wapping, East London.  Congrats on your transplant, that is fantastic, how are you feeling?

[peleroja]

Welcome to the group.  Lots of good information and friends here.  Come on back and post often.

[RichardMEL]

Welcome to our little part of the internet!!

Sorry the staff are slow with you - one would have thought they'd want to get you off as quick as they could so they could go home earlier! (that's what my nurses do - specially on Saturdays!).

 

RichardMEL, Moderator

[Poppylicious]

 

I'm in England too (East Anglia)!  My Blokey (husband) is on dialysis and he too does the twilight shift, often not getting home till 11pm and also working full-time, so I understand your annoyance! 

[monrein]

 

[lou]

Everything seems to take a long time but hopefully things will happen soon for you, its great you have you sister being worked up. I feel great since the  transplant (fingers crossed it continues!) and it has been amazing getting back to normal life again - it will happen for you soon just try and keep positive. sending lots of love 

[albiecl]

Thanks Lou! So how have things been this week? Things still going well I hope. What have you found to be the best thing since you had your transplant?
Anyway, one more day of Dialysis this week then a couple of days of normality - 
Toodles