How I got ESRF for the second time PLEASE READ THIS XX

[KATIEJAYNE2003]

Hi everyone, I thought i would take this oppurtunity to tell my story of how my kidneys failed for the second time when I reached Adult hood, and hopefully give advice to anybody who is struggling with dialysis and life after transplantation. When i first got diagnosed with ESRF I was 10 years old, cheeky, but naive. I didnt know anything about the world, and only knew a little about kidney failure (as my dads friend had recently been diagnosed) when i was diagnosed at 1st i was a little upset, but to be honest so gravely ill by that point, i didnt know my left arm from my right and literally spent the next 3 months drugged up and in and out of hospital.that was the one time where my life literally flashed before my eyes, and luckily for me to this date the closest i have ever come to dying. the doctors have said that if i hadnt have gone to them that day, i probably wouldnt have lasted much longer my body was that toxic, thankfully my wonderful mother did take me and the even more wonderful doctor realised that as cheeky as i usually was (this day i was so pale, drawn and tired) that something was seriously wrong, and in a whirlwind i  was in a childrens renal unit preparing for my first operation - like i said memories of this time are pretty sketchy but i remember the panic, and the look of helpnessness on my poor parents faces. to this day its a memory that is with me. that though is one reason why i struggle to understand why i abused my future transplant to the point where i knew it would fail and cause me to lose one of the most important things in my life at the time.
 After my transplant 6 months after diagnosis things kinda went down hill, i was in hospital for 3 months after due to acute rejection, and had to start at a new comprehensive school (which i was bullied at because the steroids made me all puffy) kids at that age can be so cruel - so i stopped taking my medication, not altogether at this point, just enough so the puffiness went down, but not so much the medics would notice in my trice weekly blood tests. things were ok for a few years i gained control back over my body, and started behaving and actually looking after myself and enjoying my new kidney. when i turned 16 though after 6 long years i suddenly just had enough, and something in me said that i didnt want to live my life by a routine of hospital appointments and taking meds, so i didnt,i would pretend i had taken meds when i hadnt and then i would make excuses not to attend clinic so that they couldnt see the changes in blood tests. parents being who they are, ie loving supportive and concerned could see that i obviously wasnt taking them and made me go to clinic.i managed to lie for a few visits that i had taken them late, or changed the time etc, and even started beliveing it my self, in the end i broke down, honestly the reason why, is that i didnt want to lie anymore, and i knew the stress i was causing my parents. and it hurt me to know i was hurting them. anyway to cut a long story short this carried on for the next 5 or so years, cycle of me refusing meds, recieving steroid therapy to counteract rejection, also reciving counselling to see why i did it, but to be honest i defied the doctors for so long i started to believe that i was invincible, and that this kidney whatever i did to it was not going to fail. however little did i know that just over a year later i would find myself in a position that i had no idea how i was going to deal with.

I know ive gone on a bit by this point but i think if you know the circumstnces surrounding the ESRF then it may help understand why ive behaved the way i have but also show you that this is definately not the way to deal with it.

when i found out my kidney was failing again, it was about 6 months before i actually went on dialysis, as there was still a 'good enough' funtion on the transplant to keep me going. and i will say now, that even though i enjoyed my teenage years, but going out all night drinking every weekend, eating what i want,there isnt a day that i dont regret my behaviour, and wish that i had done things a hell of a lot differently. it doesnt help that i havent exactly had an easy time on dialysis. having to cope with differnt ops for differnt types of treatment to see which one will work better, after each one failed. Now at 25 I am relativley settled, i home dialyse 3 times a week, work 2 jobs 1 48 hour week and a bar job in my spare time, using a hickman line at the moment as my 7 month old fistula has decided that it doesnt want to work very wel at the moment, ive just had a fistulagram so we'll see how that goes.
Basically this is just to say to anybody out there, who resents their illness (as most of us do) after or before transplant, feels like the meds arent working so you dont need them,doesnt dialyse properly for whatever reason then please dont make the same mistake i did, it hurts like hell now when i see my friends all settled with children (when i know its unlikely at this stage) or when i see my ex boyfriend with his new girlfriend (when i know before my 2nd ESRF we had plans to marry and have children) or when i see the hurt on my parents face, when they have to sit and hold me as i cry and feel desperatly sorry for myself, when things just arent going my way. A kidney as with anyother organ really is a Gift Of Life, dont waste - I for one when/if i ever get another chance at 'my life' will (when im recovered) by shouting from the rooftops, and ensure i do all I can to make sure nobody makes the same mistake as me - its only now i realise that life and the people in it, are way to precious to throw away

anyway guys thanks for reading, and taking this in - i hope it helps anybody those just starting on the ESRF journey or those who have been travelling for a very long time  look forward to your responses

[okarol]

Thanks for sharing your story. The best lessons in life come from experience. Very few of us learn any other way, even when there are other examples to follow.
Teenagers and young adults feel invincible. That's normal. They do all sorts of risky behaviors, it's part of growing up.
Don't knock yourself too much. You sound like a wonderful person and I hope things get better for you in the future.
 

[peleroja]

Teenagers and young adults feel invincible.

Oh, yeah, I'm living proof of that statement.  Back in my 20s they told me I had high blood pressure.  I figured ok, fine, I'll just have a heart attack and die, no big deal, right?  They never once mentioned kidney failure!  Wonder if I would have been so blase if they had mentioned kidney failure.

[Sunny]

Thank you for telling your story. Hopefully others might learn from it.
Don't beat yourself up too badly, though. Being a teenager with kidney disease is obviously very difficult and you have been through a lot in your young life. It sounds like you have grown into a wonderful adult and all of our life experiences make us who we are.

[monrein]

Thanks for your honesty in describing your journey to this point.  Very helpful post and I enjoyed reading it.

[paris]

Thank you for sharing your story.  Your post will help others who are in your situation.   I have a friend at church who got a liver and then a kidney transplant and decided he knew better than the doctors.  He is cutting his anti-rejection meds in half.  He is 70, got the transplants 4 and 5 years ago and brags to everyone about not taking his meds.  I want to scream at him. So, it isn't only youth who think they know better.  You have learned a great lesson and have matured.   You can't change the past.  We all live and learn.   

[prospector]

Thanks for sharing your journey. As a new member of the dialysis club I share some of your thoughts. I sat down and really thought about what is important to me. I have to do this now for those 5 beautiful grandkids, wife, son, and daughter.

[florida.flyer]

thanks for your story, I've been on PD for 14 months, and to tell you the truth, I was starting to get alittle lazy about taking my meds, especially the Lasix....after a week, my ankles started swelling...(duh) and I read your story, I have since decided to get back on track and behave myself, I have a 10 year old granddaughter who lives with me during the school year and a 2 year old grandson living in PA that I visit mabe every other month or so.  I need to stay as healthy as possible for them. sometimes, you just get tired of all the "stuff" and would like to give up. now it doesn't seem like a good idea!!
again, thanks!

[lruffner]

KatieJayne-

You should be applauding yourself at this point, instead of beating yourself up. The first step in fixing anything, is owning up to the responsibility on your part. I find you quite admirable and brave for sayingit like it is. You just keep on, keepin on and be patient for that second chance.

You should consider joining up with some sort of kidney foundation in your area, because I believe you would be a great motivational speaker to those facing kidney disease!

[TynyWonder]

KatieJayne,

First of all, I LOVE your name!      I also want to say that I thoroughly enjoyed reading your story and it could not have come at a better time because just yesterday, I was on my "pity pot".  It seems when I have doctor's appointments regarding my kidneys it REALLY depresses me.  Your story is very uplifting and I KNOW without a doubt that had I been so young & having to go through all you have as a teen, I would have not taken care of my body like I should have either.   You are also very lucky to have had such loving & understanding parents.    Thanks for sharing your story, keep sharing your story!!!   

[pelagia]

KJ - thank you for sharing your experiences with us. 

[RichardMEL]

Katie (yes I love your name too ),

Thank you so much for taking the time and effort to post this - and being so honest about yourself and where you were at. That must have taken a lot of guts for you to admit this to yourself and then to others. A very difficult lesson to learn, but I don't think anyone would really blame you given where you were in your life. It's hard enough being a teenager let alone having to deal with ESRD, dialysis, meds, etc etc...

I really apprieciate that you posted this. Thank you so much.

 

[Lucinda]

OK Kid, you can just stop beating yourself up right now!!!  You were a baby and by your account here, a really nice normal teenager just wanting to have fun.  Don't have regrets about enjoying those years and certainly don't beat yourself up about losing that kidney. I am not advocating doing the wrong thing but when it comes to enjoying your youth, you did what most of us, especially me, would have done in your position. Don't have regrets.  You could have behaved like a saint over that time and still lost the kidney.....then you would have had regrets that you had lived the pure, good life for nothing.  You are a very brave girl to open up and tell your story but in your shoes, I would have done the same.  This period of dialysis I am sure is just a hiccup for you and hopefully another transplant won't be too far away.  So Miss KatieJayne.....I am loving your name as well....if I take out the crystal ball there will be a transplant, a gorgeous man and children - but not necessarily in that order.  Man first, then transplant, then kids.  Why do I think that?  Let me tell you about a man I met through my work.  His name is John.  John was at the doctor's surgery one day and he got chatting to a young lady.  The doctor was running late with his appointments so they spoke for about one hour.  John told me he was in love with her from the second she opened her mouth.  He asked her out for a coffee after their appointments, and she went although a little reluctant.  She had had a transplant when she was 15 and it had lasted six years and she had just started back on dialysis.  By all accounts during that six-year period she had done everything by the book....but she still lost the kidney.  She told him about her ESRF....and he could not have cared less.  They were married about a year later and then she unexpectedly fell pregnant. Her doctors suggested she have a termination and she refused.  She  continued with the pregnancy, which admittedly was difficult.  She spent the last few months in hospital and then they prematurely induced the birth.  After the birth of the baby, who is now a big healthy six year old, her husband gave her one of his kidneys.  When I told him it was wonderful to hear a story with such a happy ending he said it was too early to say that because they still had a lot of living to do.  He said he cannot describe how grateful he is to Casey that her ESRF has been such a gift to him.  He said that meeting her and becoming familiar with the disease has made him live every single moment of his life and he has done things and taken risks that he wouldn't have if it hadn't been for Casey.  In short KatieJayne......I think there is one of those out there for you. You sound like a terrific lady and I look forward to reading more posts from you. Don't give up on your dreams Darling.  xxxx       

[RichardMEL]

Hey now Lucinda makes a very important point here!! As she said, you (Katie) may have been a saint and done everything "right" and still lost that kidney after that time, or earlier... For sure, not taking your meds, and lying about it no doubt probably contributed to it going, but hey.. it's in the past. We all have regrets from our pasts.. and the important thing is that WHEN you get that next transplant you will know what to do (and not to do) and hopefully it will last that much longer and give you your life back again!!

There's nothing you can do about what's happened... you just have to accept it, and move on with the future - which you can have some (sometime small) influence over...

So hang in there, and hang with us - because we're the cool kids... even if we don't have sexy names like "KatieJayne"!! (gee, I could really fall for a woman with that name.... LOL)

[Lucinda]

Hey KatieJayne.  If you haven't realised yet, the gorgeous RichardM is the romeo on this site.....and he loves each and everyone of his Juliets!!!   

[RichardMEL]

Hey KatieJayne.  If you haven't realised yet, the gorgeous RichardM is the romeo on this site.....and he loves each and everyone of his Juliets!!!   

Hey now I *was* being serious!!!!

[KATIEJAYNE2003]

Hey all, just wanted to say a big massive and WELSH thank you - ive had a few tears in my eyes reading your replies, as its nice to commmunicate with people who actually understand 1st hand what im going through, and as fellow renal patients can understand whay that period of my life was so difficult (although the support recieved off my parents and friends is great they are very critical of the way i chose to live my life then because they couldnt see inside my mind to know the mental pain i felt. You all sound like a fabulous bunch of people with extrodianary stories, and i look forward to hearing more of your stories and keeping you updated with whats going on in my life.
Thanks again
lots of love and hugs xxxxx