Hi, from New Zealand! :)

[AntNZ]

Hi all

I am Antoinette and I am from New Zealand.
I had a transplant when I was 3 years old which failed when I was 17. I have been on dialysis since then I am now 23.

Just thought I would say hi

Cheers,
Ant

[renalwife]

 :beer1;Nice to meet you, Antoinette.  Since you are are on D, (and I'm not), I will have your beer of welcome.   Were you in the earthquake? 

Since you are an "old-timer" with the kidney issue, you can share with us, and we with you.  This is a very helpful and friendly forum.  You will be happy here.  Welcome.

[RichardMEL]

G'day Ant from "across the ditch" and welcome to IHD!

(no I won't make any jokes regarding sheep or the number 6!!)

It's a real bummer to read you have basically had to deal with kidney issues since a very young age, and while 14 years with a transplant is wonderful, to be stuck on D as a teenager and young adult is something nobody wants to see!!!

Not only is it great to have another kiwi on board (We so miss dear Hanify-RIP) but I am sure you have a lot of input to give, specially for some of our younger members and it would be great to have you as part of our community!

Again, welcome!

RichardMEL, Moderator

[AntNZ]

Hi RenalWife & RichardMEL,

RenalWife; Thank you! You can gladly have my welcome beer as I don't drink I find it hard enough with the 1litre fluid limit that, I figure, I don't need another challenge with drinking alcohol
Yes, I am an 'old-timer' as you say in regards to Renal things, but I've only been on dialysis for the last few years. Which earthquake are you referring to? The ones in Christchurch or the ones in Marlborough and Wellington? Haha, it's getting very annoying here in NZ with these quakes, that's for sure! In answer to your question though, no, I wasn't in any of them. I am from Christchurch but have been in Auckland since 2008. Judging by your username I take it you're married to a dialysis patient? What is that like for you? I've been with my partner for 2.5 years and I know it's difficult for him, especially as within the first 3 weeks of us dating I had a surgery (attempted, but that's another story!) to put a graft in my arm - he was thrown in the deep end a bit :/ Thanks for your warm welcome

RichardMEL; Thank you, too! No worries about the jokes, lol. I can handle them! :)Haha, in reply to your comment about dealing with Renal issues from a young age; I actually count myself lucky. Purely because I had the chance to go to school (right from primary to highschool) without any issues. I had a small rejection when I was 14 when my meds basically stopped working and were making my body toxic. I left school when I was 15 so that wasn't an issue. I even got some work in there to help fill out my CV before I ended up on dialysis - so it wasn't so bad. I know of worse As for being on dialysis as a teen and young adult; I'm a bit meh on that sometimes. I hate it sometimes, and others I just feel like 'well, there's nothing that can be done right now, so just stop moaning and deal with it'. I'm lucky I've had such a support base. Otherwise, I wouldn't be here. Sad to say, but it's true. When I first went on dialysis I didn't deal with it that well. Another 'Kidney Kid' friend of mine had just passed away after his kidney failed. He was 19 and had decided that he didn't want to go on dialysis again. He had had 3 transplants throughout his life and the rest of the time was dialysis. This is why I don't see my situation as bad. Sure, it's hard. Especially failed surgeries and fluid limits, but aside from that, I'm breathing so I'm okay.
Sorry about that rant! I have a little bit of a history and reasoning as to why I am here and why I feel the way I do, as I'm sure everyone does.

Thanks again, guys, for your warm welcomes They are much appreciated.

Cheers,
Ant

[RichardMEL]

No worries Ant - you write well and what you say makes perfect sense to me so no apologies or anything needed. We each have different experiences, backgrounds and beliefs and how we feel about life based on all of these things and at the end of the day I personally feel it should be what works for YOU that is important, or what you are comfortable with. For example, some years ago I was actually on D and I somewhat randomly met a lady online and it only emerged after we met that she had had a kidney tx for 13 years or something. Anyway that was her first tx (or only I should say) and at that time (I am thinking this was maybe 2008 or something) she declared if the tx failed she would refuse to go back on D. At the time I was  pretty stable on hemo. Dying for "the call" (poor use of the word "dying" there - oops ) and life, and was so impressed with her having this kidney for 13 years and was doing well however part of me couldn't understand her attitude at the time. I then thought about it a bit and thought yeah, after the freedom of D, I can understand totally not wanting to go back to dealing with all that, and while I think if/when that time comes for me I probably WOULD go back, it's about respecting everyone's choices-their body, their lives, their decision I think. Everyone's different.

Anyway I guess my original comment about you being a teen/young adult dealing with all this crap was more along the lines of that from my perspective as an old fart (well middle aged anyway) it always used to upset me to see new patients coming into D, but more so when they were young... mostly because I think wow, in school (or starting work etc for you) you miss out, or potentially, so much at that stage like the experiences of that "freedom" of youth, dating and all that, choices and the world opening up as you mature etc. By the way when I write "you" I don't mean YOU in particular Ant, just younger people in general. Me, I started in my mid-30's and well I'd had a lot of experiences and all that already so I sort of felt well it totally sucked to be here, but I got time to do stuff, travel the world and get my heart broken heaps already.

It's absolutely vital you have a wonderful support system around you and that's fantastic !! i think one of the reasons the lady I mentioned earlier had made her decision was because she had no real family around her or friends that I knew of (and she decided against my friendship too for her own reasons) and I think that had a great deal to do with how she felt.

You're in Auckland huh? Nice city. It was actually the first place I flew internationally after my transplant. I spent a weekend there. Stayed down at the wharf which was cool and walked about the city and up to that big park they have there.. maybe the botanic gardens lol I can't remember it's been a few years, but anyway it was quite nice. Probably less shaky than points south!


Anyway enough of that rambling Just glad you found our forum and hope we can be a good place for you!!

[Sugarlump]

Hello AntNZ
Welcome from a long way away in sunny England 
I am a fellow dialysis patient and i like to have the odd rant or two!!!!
I have after 8 years of trying had a complicated fistula op so waiting to see if it is going to work. My line has been playing up this week grrrrrrr

This is a good place to hang out, for both dialysis chat and non-dialysis chat. And for not having to explain....

[AntNZ]

RichardMEL;
No probs on the rant - we all have our opinions and everyone has feelings and that's okay I'm not worried, or wasn't when I started, about being young on dialysis. But that was almost 6 years agao and I've had 5 tunnel/neck lines, and 3 failed fistula creation surgeries and now have a graft. The surgeons say that my next option when the graft fails (which it will) is to have another neck line, which don't work properly, and then they would look at my legs. Everyone knows leg surgeries are very risky and a last resort because of that fact. It really upsets me because despite all that, there is nothing the doctors can do about my place in the list, AND have actually taken me off the list altogether until my ovaries get sorted out.
I've cried many times. I told the docs that I wouldn't mind so much if I'd had kids, travelled, lived my life etc. I'm only 23. I've got all that ahead of me and I just feel like I can't do it. Ahh well. When I get like this I just remind myself that I'm still breathing and each day is a new chance

Sugarlump;
Hello Thanks for the welcome! Wow - you're in England - I've always wanted to go there! (I've even looked into it with dialysis - although, I think the 2 week swap thing is not enough time to see a different country for the first time!) Have you had your line for 8 years? I couldn't handle that. I enjoy swimming and having baths too much! I know all about the lines playing up. Do you know of a thing called TPA? They used it many times on me when my line wouldn't work. (No movement, at all). Downside was it took an hour to work after it had warmed up enough and that meant an hour less on dialysis.
I agree on the good place to chat and not having to explain. That's the biggest thing I find difficult. Explaining. I'm looking for a job at the moment but because I've only done two minor jobs whilest being on dialysis, there is quite a gap in my CV and the prospective employers quiz me on why - but you say 'dialysis' and they don't understand. Especially when I say I have to have a 'procedure' (fistulogram) every 8 - 12 weeks lol. Ignorance is bliss, isn't it?
What did your op entail? Was it the two-stage surgery?

[Sugarlump]

Hi AntNZ
I have been on dialysis on and off for 8 years. I have had two transplants, one lasted 3 months the other 11 months.
I have had neck lines and femoral groin lines, maiinly because every fistula  attempt failed.
About three weeks ago my line packed up completely (Yes I was costing them a fortune in TPA dwells) and i had got to to the point of no return...
So they put me in an ambulance with flashing blue lights and sent me to Addenbrookes (Major Hospital) I went straight into surgery, had a venogram, a new temporary line
and then they created a fistula in my left ellbow by moving the veins. So far so good. We have to leave it another 5 weeks to mature.
Just need my temporary tunneled femoral line (the worst thing ever) to survive until then...
I hate it when it plays up. I hate it even more when I have to waste time with a TPA dwell. If I dont get good clearance I get breathless. And tired.

If and when this fistula works and they take my line out, the first thing I'm going do is have a bath (forever) with candles and music and champagne 
I so miss my bath....

It's a tough life being on dialysis, a lot of ups and downs but don't let them get you down.  
I too am very fortunate in having a supportive carer/partner... who takes everything in his stride 

[AntNZ]

Hey Sugarlump;

Wow - that sounds so tedious and heartbreaking! I only know what it was like to have a transplant last for a long time - it was my Mums kidney so I'm guessing that's why it worked.
Far out, being sent off to hospital and enduring surgery that way sounds so scary! I bet your partner was right by your side. What's a venogram? Just where they do a scan of your veins?
What's it like having the groin lines? I've seen them and they don't look comfortable at all! I'm hoping, for you, that this fistula works! They leave it for 8 weeks to mature here also They sometimes do have to bring the veins up to the surface. I don't even have that option because my veins are far too small - hence the graft.
Is a tunnelled femoral line a neck or chest line (I'd assume it's chest?)? There are slight differences in the two.
I know all about bad clearance = heavy chest feeling. It sucks. Makes me feel overloaded The breathlessness is due to the fluid overload. Unfortunately hospitals don't have the capacity to dialyse a patient their full hours after a TPA lock. Sucks.

Ohhh, that bath sounds lovely! Have the champagne for me I don't drink alcohol.

I used to sneak baths, and swims and also hot pool 'dates' when I had my line in. I told the doctors I was doing it too. They just told me to make sure I wore enough Tegaderm So naughty of me, but in Summer you can't help yourself. I self managed the cleaning of my line anyway so I just did that straight after

I think I scared my partner the first time I met him. I had a tunnelled line (chest) at that point and I couldn't wear a bra because of it being too uncomfortable. He told me, a few months after, that when he saw the points of the line he reckoned it looked like I had an extra, hard, nipple on that side LOL!

Ohh, also, be careful of the elbow fistula - I don't know if it's the same as with grafts, but I'm not allowed to have my arm bent too long or else it narrows quicker. As it is, I have to have 8-12weekly Fistulograms. Cause that's so fun    Actually, I don't mind them so much - I just make sure I demand lots of pain relief (Fentanyl as I'm allergic to Morphine) when they're going over the risks etc lol. They end up giving my 100mg of Fent and 50mg of Cyclizene on top as the 100mg makes me feel nautious.

I know how to get what I know I need.


How long have you been with your partner? How does he react to all the surgeries etc?

[RichardMEL]

Dear Ant,

Oh my gosh - 8-12 fistulagrams A WEEK and you have all these neck line issues and they have to search high and low (no pun intended) for access place? yeah no wonder yu're over it and all... I offer virtual hugs (your partner can dispense them for me ). that's really rough... I'm so sorry it's become so difficult for you and heavens I'm glad you got the "naughty" time - I mean the hot pool dates, swims etc because you know I think when you're in situations like this it's as much about quality and enjoyment of life as quantity. I kind of felt that way about the renal diet that I was very careful and used common sense, but I never saw the diet as NEVER have this or NEVER have that, but ti have in moderation and so on. To me what's the point if you can't have enjoyment in life (even if that's an extra hard, yet not real, nipple haha *hide*).. so yeah if you were good and managed it well(and you were) then why the hell not? and being honest with the doc is the best policy so go you Ant!

I really so much hope things improve for you somehow from this current messy state.. at least you do have some real loving support around you and  that's so important and makes it all a lot easier.

 

you can be sure I'll raise a glass of french champagne when on my flight to Vegas to celebrate with some other of our kidney friends, and think of you and send well wishes (and I will sort of fly well kind of near to Auckland on my way!! lol)

[Chris]

A quick hello from my hospital bed.

[AntNZ]

Hey RichardMEL,
Ohhh I confused you - I'm so sorry. No I meant every 3-12 weeks I have a Fistulogram. If not sooner if pressures be stupid. I'm actually having one tomorrow morning, which I didn't have to chase up with the hospital (for once) and my pressures have been great - TYPICAL! I'm going to getll them to do it anyway because I'd rather have whatever narrowing has occurred to be 'blown up' rather than to leave it and have it get worse and then I have to work from the bottom (nurses) to try and force them to book another Fistulogram for me through the Head Nurse. And then they get me into the unit first cause, I guess, they want proof. Waste of time but hey.
There was a time in December when, no matter how I took my meds, with or without Anti-Nausea, morning or night, they would make me vomit. I stopped taking them. I told the doctor to his face that I didn't see a point when they would just be puked up more or less straightaway anyway. He wasn't happy but knew I had a point. I'm taking them now though
Hmm - improving life? I'm not sure how that will happen. I'm 23, had plenty of failed surgeries, I'm quickly running out of access options, and now I've been taken off the list. Just feel like shit, to be honest. I feel like it was okay, as long as I was on the list. They won't investigate further into my ovary issues because of all the scar tissue, blood pressure lowering during GA and the fact that it could stuff my graft. So while the Renal surgeon says they have to do that before I get put on, I already know it won't happen. So I'm screwed. But I have no option other than just keeping on

Hey Chris
Aww, why are you in a hospital bed? What's happened? I read your little 'blurb' (I call them) at the bottom of your message - you've had a bit of a turbulent life, haven't you? I hope whatever you're in hospital for is getting better

[Chris]

Hi AntNZ,
The doctors do not know, but heard nurses talking (shif change) stress test was stopped early due to something starting with an h and doctor was still reading report. So probably cardio doc coming in later or tomorrow ( not like I'm going anywhere with an IV pole at my side)

[AntNZ]

Hey Chris,

Of course you can go places! You just have to take the poll with you
Keep us posted on what is going on

Hope it's nothing too serious!

[RichardMEL]

Ms Ant - do not worry I'm male so easily confused.. all good but makes more sense now of course and yes I totally see your point and agree to insist on regular checks - better to find out ASAP than wait for something nasty (nastier I guess in your case) to happen given your situation.. so I'm sure it matters so much to you that I support what you're saying, but I do

just on the list situation.. when you say "taken off" do you mean "inactive" - your D time would still count if you can get "active" again on the list I think.. it's not like, as far as I know, and NZ is covered by our system too I believe, you're off and none of this counts fo ryou.. though of course I am (unhappy for you) to be corrected on that aspect.

It does sound like you're between a rock and a hard place with where you are at. I'm sorry.. so I guess when I say I hope things can improve, it is a real wish that somehow.. something positive can turn for you!!!

Hang in there!!

[AntNZ]

Hey Richard,

I don't mean to make it about me but, as I said earlier, there are reasons and history behind everything and everyone (I would love to hear yours!).
Thank you for your support It helps.

As for the list, yes, when I said 'taken off' I meant temporarily and I would (hopefully) be put back on in the same place I was in when I got taken off. Yeah, we work the same where it's basically a 'points' system where the longer you're on the more priority you are (minus being a very young child who are, of course, top priority).

It just sucks that in the mean time, there is all this shit to go through first. *sigh*
Sometimes I just wanna not go to dialysis, or not obey the restrictions. But while I'm a bit less 'strict' on the fluid and probably the diet too, I could never miss a session.
I'm too scared what it would do to me!

[Sugarlump]

Hey Sugarlump;

Wow - that sounds so tedious and heartbreaking! I only know what it was like to have a transplant last for a long time - it was my Mums kidney so I'm guessing that's why it worked.
Far out, being sent off to hospital and enduring surgery that way sounds so scary! I bet your partner was right by your side. What's a venogram? Just where they do a scan of your veins?
What's it like having the groin lines? I've seen them and they don't look comfortable at all! I'm hoping, for you, that this fistula works! They leave it for 8 weeks to mature here also They sometimes do have to bring the veins up to the surface. I don't even have that option because my veins are far too small - hence the graft.
Is a tunnelled femoral line a neck or chest line (I'd assume it's chest?)? There are slight differences in the two.
I know all about bad clearance = heavy chest feeling. It sucks. Makes me feel overloaded The breathlessness is due to the fluid overload. Unfortunately hospitals don't have the capacity to dialyse a patient their full hours after a TPA lock. Sucks.

Ohhh, that bath sounds lovely! Have the champagne for me I don't drink alcohol.


I used to sneak baths, and swims and also hot pool 'dates' when I had my line in. I told the doctors I was doing it too. They just told me to make sure I wore enough Tegaderm So naughty of me, but in Summer you can't help yourself. I self managed the cleaning of my line anyway so I just did that straight after

I think I scared my partner the first time I met him. I had a tunnelled line (chest) at that point and I couldn't wear a bra because of it being too uncomfortable. He told me, a few months after, that when he saw the points of the line he reckoned it looked like I had an extra, hard, nipple on that side LOL!

Ohh, also, be careful of the elbow fistula - I don't know if it's the same as with grafts, but I'm not allowed to have my arm bent too long or else it narrows quicker. As it is, I have to have 8-12weekly Fistulograms. Cause that's so fun    Actually, I don't mind them so much - I just make sure I demand lots of pain relief (Fentanyl as I'm allergic to Morphine) when they're going over the risks etc lol. They end up giving my 100mg of Fent and 50mg of Cyclizene on top as the 100mg makes me feel nautious.

I know how to get what I know I need.


How long have you been with your partner? How does he react to all the surgeries etc?

A venogram is when they put dye in your veins and then thread a wire through with a camera and have a good look on a big screen...doesn't hurt and once you get past the yuck factor is quite compelling to watch.
I hate having a femoral line. It is difficult to look after, to find clothes to wear comfortably with and to get easy access at dialysis. Not to mention the privacy issues! I like to dress up and wear quite tight clothes, as well as go to lots of fancy dress parties, and the line is a real downer on thiis. It's in the wrong place to wear tight jeans or little skirts or even corset tops... I will not miss it one little bit if and when it goes. It sits about  three inches below the waist a little to the left side, Ugh Ugh Ugh!
For eight years they had tried three fistula attempts and told me my veins too small and too deep and too branchy!!! But this particular surgeon found a suitable vein and bought it to surface (It was a long, tricky op under general) but it is maturing nicely at the moment.... so fingers crossed.
I have been with my partner for two years. When I first met him, he used to not even like watching bloodtests! Then I got sick, and he stepped up to the plate and was there for me every step of the way, even holding my hand during a biopsy, learning to change dressings and help me. He has trained to operate the dialysis machine as well. He is a star. My illness, instead of rocking our world, brought us together even stronger. What started off as fairly casual became solid. He has helped me cope with the really difficult moments ... the black times and when I felt I had had enough ... as well as shared the small but minor triumphs.
I think this kind of illness either makes or breaks a relationship. I got lucky. I hope you do too...   

[AntNZ]

Hey Sugarlump

Oh... I know what a Venogram is Similar to a Fistulogram, by the sounds of it.
The line sounds really difficult to get around. From what you've said it sits around the same place as a Tenkhoff Cathetar (for PD). Am I right? My God, I could take a photo and create a map of all my scars etc lol.

Your partner sounds so supportive, and game I've been with my partner for two and a half years and he's amazing too. I've trained him to set up the machine etc but he won't watch me needle, he hates it. I've said to him I understand because at the end of the day, I wouldn't watch if I didn't have to either lol.

Our partners sound similar with how much they are supportive It's so good to have such support so close to you. Craig, my partner, enjoys me having a fluid limit because if I get a drink I can't have all of, he's the one who gets the rest - more or less for free hahaha.

May I ask how old you are, Sugarlump?

[Lexxtech18]

Hi AntNZ! Nice to meet you! Wow, another youngin... we seem to be flocking in lately. lol 

[AntNZ]

Hey Lexxtech18

Nice to meet you, too Yep, I'm only 23! How old are you? Haha, must be the (unfortunate) time of year for us young ones to find support

[Lexxtech18]

I'm 25! I feel so old!! lol I've been having kidney problems since 2 years old (most likely congenital), 2 transplants and going on 9 years of dialysis now. It's been quite an adventure. I feel like I have more life experience than most 60 year olds!

[AntNZ]

Hey Lexxtech18,

Oh my god, I feel the exact same way in regards to experience! I was diagnosed with Congenital Nephrotic Syndrome - the Finnish type, when I was about two. Had 7 weeks of PD when I was 3, and then had a transplant on 23rd June 1993 (also when I was 3 ) from my Mum.
That went fine until it completely rejected (my own fault - I had a rough year and wanted nothing more to do with medication - of course, I didn't understand the implications) in 2007 (17-years of age). Since then I've had surgeries, tunnelled lines, neck lines, nephrectomies, an appendisectomy and now have a narrowing my by heart which will one day need treatment, a clot around my jugular on my right side and a graft in my left arm as well as many more scars
Deffinitely a lot more experience in life, and a lot wiser, now from it than some other people lol.

What's your story like? I bet it's just as, if not more, colourful

[Chris]

60?, i feel like saying 90 most times! I'd take feeling 60 right now if we are talking a healthy 60 that is!

[Sugarlump]

May I ask how old you are, Sugarlump?

    

49 going on 6!!!!!

Fixed Quote - RichardMEL, Moderator

[AntNZ]

Hey Chris and Sugarlump,

Haha 90?? Really? Aww.

Sugarlump, you're still young