Boxes boxes everywhere!!!

[MandyV]

@Kipper- I started on CAPD, 3 exchanges a day; when my clearance deteriorated I was given the option of 4 exchanges or APD, so I changed to the latter. Then things got gradually worse so I upped the APD cycles and finally was told to add a 'tea time' bag (which I could swap for an extra hour on my machine if necessary). Remember that I was on PD for nearly 6 years and also had 2 failed fistula attempts and was clear that I wanted to stay on PD as long as possible ...

[IgAn1976]

Hi Devils Advocate,

Thanks for your input but to be perfectly honest I hope it was tongue in cheek as it was not at all helpful. I shouldn't have to go begging round my neighbours for space in their bins and telling them my personal medical business just because the council have a knee jerk policy that and I quote them here "recent trials have shown that there is sufficient capacity throughout the year in a 240 litre brown bin'. That of course is for a 'regular' household- I'm asking my council to treat me as an exception.

Maybe if your house was full to the gunnels with cardboard you can't get rid of, you might be a little more sympathetic too.

Denise

I think she was talking tongue in cheek?

(edited by Moderator)

[IgAn1976]

Hi Mandy,
I'm going to sound thick now but how is it you are on apd & capd, also do you do the overnight on apd and 4 exchanges a day on capd? it's just I've never heard of both before, either one or the other.

It's fair to say I did have it easy, we have a large utility room with excellent storage, all on the ground floor.
The clinical waste guys were happy to take my crushed boxes so I didn't have to worry about disposal, Denise have you tried asking for this?

While I firmly beleive PD offers a much better solution to the need for dialysis it's not without it's issues.
IgAn1976 sorry I assumed you were on dialysis, no need to amend your signature to say "not on dialysis or had a transplant". Everyone's different but when I was diagnosed but wasn't yet at the point where I needed dialysis I barely gave it a thought. My neph thought I was in denial, I just took the view that I would worry about it when I had to and live to the max in the meantime.

I chose to make it my signature because of the amount of presumptions.
I've never been to Egypt, but I do worry about 'it' often, though I do like to take a break from the worry as with many illnesses, the worst part can be the worry/not knowing.

[Kipper]

Wow Mandy that's lousy, I'm guessing that you are now transplanted, I know PD has a limited lifespan although this varies from person to person. You must have been getting to the point where PD was becoming no longer viable.

If transplanted I hope all is going well, personally I've all but forgotten what life on dialysis was like, then again maybe my neph was right and I just like ignoring things unless I have to face them.

Best wishes - Keith.

(edited by Moderator)

[Rik]

Hi Denise ...
I just rang Hull council and asked about the removal of cardboard boxes due to my medical condition ...
I explained I was on dialysis and that because of this I had LOTS of cardboard boxes that is far far more than normal for a general household ...
I asked if this could be removed under their 'Clinical waste collection service' ... I made it quite clear that it was not needles etc ... just lots and lots and LOTS of cardboard boxes ...
she went away and came back to the phone in less than a minute and said yes this can easily be done under their clinical waste collection ... and wanted my details ... she was very helpful
I got the number from here ... http://www.hullcc.gov.uk/portal/page?_p ... ema=PORTAL I rang the number on that page ...

you may want to try the same route ... clearly one hand in the waste and recycling centre doent know what the other hand does eh!!

[Fabrette]

Hi Keith,

You and I have been on a journey these past few years (as have many of the posters on here, regular or otherwise) - I've followed your posts through your days on PD and your transplant even though I don't always post I do read most of the stuff on here. The people who post on this site come here looking for support and advice from those affected by renal failure and there are those of us who feel they can get things off their chests here where they don't want to keep burdening their loved ones, who also have enough to cope with as it is. Only those who have experienced some of the treatments that are available to us to keep us alive and well can truly speak from experience and in my book that is worth more than gold to me.

I only started CAPD yesterday and all the preparation in the world wasn't enough to stop me feeling like a bombshell had dropped on us and completed blasted our way of life out of existence. I'm tired and in pain. I come on here as it brings me comfort I can't get anywhere else. Without posters on this site who have been 100% supportive and sympathetic I'm sure I would not have coped at all well.

I am aware of the thread that had to be deleted after it had got 'out of hand' although I didn't join in as I didn't have anything constructive to add. I guess a degree of self control is a virtue. If the two posters you allude to want to reply to any of my threads/posts they are , of course, welcome to, but I shan't reply if it's obvious that the intention is create a 'debate' or to pass off sarcasm as humour.

Thanks for your suggestions re the cardboard everyone- if I have to bite the bullet and take it to the tip I will do, but not until I've at least tried to get the council to recycle it for me. You don't get anywhere if you don't try. They were prepared to take it two years ago- my request hasn't changed, its their policy that has changed.

Take care all

Denise xx

[Fabrette]

Hi Rik,

Thanks for that, I don't live within the Hull boundary though, I'm with East Riding Council but they are coming every week to take the clinical waste bags so I'll ask them and see what they say.

many thanks

Denise xx

[Fabrette]

Hi DevilsAdvocate,

Yes I did look this up before I rang customer services and ER of Yorks Council is collecting my clinical waste every Monday, however, they did call me back this afternoon and advised that they do not consider the cardboard boxes the supplies arrive in to be clinical waste so its not an option for them to take them away. They did endeavour to remind me that removing my cinical waste for free was 'at a tremendous cost to the council'. Best make sure I don't assume anymore that the cost is offset against my council tax bill then.

They said their policy across the board is that no-one, with no exceptions, can have an extra brown bin as it would set a precedent. Fair do's but they can make exceptions. My neighbour (as I've mentioned) has a 360 litre general waste bin as they have medical waste which is not strictly speaking clinical waste but there is too much of it to go in a regular 240 litre bin. I was offered one of these bins two years ago when I first enquired about disposal of the extra cardboard as in those days ER of Yorks Council didn't let you put it in the brown bin- it was for garden waste only- they didn't have the facilities then to heat treat it enough to make compost from it. Now I can't have one.

They did ask why I can't just get someone else to get rid of it for me but agreed that leaving it out next to the bin and asking the bin men to take it when they come wasn't an option as on a windy day it would be all over the street and on a wet day it would turn to mush.

Having said that the lady I spoke with was sympahetic to a degree and to be fair to her said she had never come across a CAPD patient before asking for help like this. She said she will look into it further and call me back.

You know I'm not going to make a huge issue out of this box business really- I'm sounding off about it because I feel its unfair to say you can have help one year and not the next when all that's changed is policy. I do my bit to recycle as much of my waste as I can and I can't avoid having all this cardboard at my house but neither do I want to be responsible for it all going to landfill if I have to cram a load of it into my general waste bin. They may well still say no go but at least I'll know I tried.

Denise

[MandyV]

hi Fabrette / Denise

I didn't realised that you are new, this week, to PD so I can imagine that everything feels a bit weird, uncomfortable and just plain hard work. I can remember my first few days and know that it definitely is the hardest time because nothing is yet 'normal'; rest assured that it does become 'normal' remarkably quickly and the feelings will pass sooner than you can imagine right now.

The best advice that I can give you is to start as you mean to go on, so if you want to go to a friends house and be able to do an exchange there then at least plan it now ... I had planned a work trip that should have been after a month of starting PD, my start date was delayed and, because I didn't want everyone knowing my business, I went away in week 2. i was terrified at the time (it was to Moscow in winter and I was worried about hygiene, bag warming etc etc) but it was the best thing because I didn't have time to fret about it. So whilst I am not suggesting anything that drastic, small steps to normalise your life will be well worth it.

That being said, don't create unnecessary stress, so save the boxes until you feel up to tackling that! I still have a few as they are really strong and useful so offering them to friends for moving, storage and the like might also be a way to dispose of them. Finally your PD nurses will not be suprised to hear from you a lot in the beginning and I made full use of them and asked some really dumb questions but they are used to that and never made me feel a nuisance!
Best of luck!
Mandy

[yachtman]

here in staffordshire we get another blue bin for the cardboard. Perhaps suggest to council it is a disaibility issue. you will probablyget a betterresult. dont forget there is a council tax reduction for the space taken for the boxes, but there are certain restrictions, such as you have to have 2 bathrooms.

I have put my ankle out crushing them, so now put them outside to get wet, so become foldable, with out damaging me.

[jenjen]

Hi Fabrette

Nothing to add about boxes, but I know that starting dialysis is tough and is like having a bombshell dropped onto your life. The first 3-4 months will be really tough physcologically, but I agree with Mandy that a positive mental attitude from the start is crucial (even if you feel like crawling into a dark corner). One of the first things I did (within about a week) was to go stay overnight at a friends, bags and exchanges and all just to challenge myself. Once I'd done that it gave me huge confidence that I would adapt and things would be ok.

This forum was the thing that pulled me through those dark early days, especially people like Mandy, Big Buzzard and all the others who were living on PD pretty much normally in spite of it all. I'll never forget Big Buzzard's post of a picture of him dialyzing by a tree in a park, with the bag hooked over a branch I bought myself a nappy changing bag for such occasions!

Finally, the best thing my PD nurse ever said to me was: "fit PD around your life, not your life around PD" and it really helped me to stick two fingers up to the PD and not let it beat me

Jen

[Fabrette]

Hi everyone,

Thanks for your replies. Yachtman I like the idea of letting the boxes get damp first- I did tell the council they are heavy duty cardboard- I haven't had one to rip up yet as my PD nurse took the two I had for her friend who is moving!!

Mandy and JenJen- thanks so much for your advice. I just did my first exchange totally alone and I did quite well- the only thing I forgot to do was to put the clamp shell on the end of the tubes so that when I pulled the lines out to connect to my dangly I looked at it for a second in utter confusion thinking- "Now what's this?? That's never going to fit on there????"...I reckon I'll get there tho!!

I feel like I've had a massive Christmas dinner- I'm only small and I'm not even doing a full bag yet- will my tummy stretch??

I love the idea of Big Buzzard doing PD in the park!! I'm going to aim for things like that!!! I'll remember what you said- to make it fit round my life and not the other way round!!

Denise xx

[MandyV]

Glad to be of help Denise! Yes you do get used to it, I suppose it stretches, but you may still find if you have done a 'heavy' bag - i.e. one with greater glucose of extraneal and you have 'taken off' a bit more fluid than usual, you will feel it, but will know that it is time to do an exchange and as you drain it will feel better immediately.

I also only did 1.5l during the day because of abdominal surgery and that is another reason APD worked better for me as I could tolerate 2l at night because I was in bed.

You have probably been told this but you can also use room temperature bags if we get very warm weather as it helps you cool down I did that mainly if I was on holiday abroad in a warm climate, but hope springs eternal!!

[Fabrette]

Hi Mandy,

I'm so glad you said you only did 1.5l. I'm only doing that (if that) myself tho the nurse said eventually I'll have to put in in the full 2l but I'm like- no way- there's just nowhere for it to go!! My belly was so taut and distended last night that I looked 5 months pregnant and my scar was so stretched across the middle my hubby said it looked like it could burst!! I actually couldn't take a deep breath and couldn't get comfy anywhere- it was just like being pregnant again- I almost felt the need to waddle like I did carrying the girls!!! I put my hands over it without thinking and I'm 45- I'm a tad old to be having another one!!!! I put 1.5l of extraneal in last night and like you found it was okay once I was laid out in bed- but I can't live my life laid out so I hope I can get away with using a little less during the daytime exchanges!!! I guess when I have my first test I'll know if its working okay not using the full 2l- I do have fairly good residual function so I hope I can get away with it!!

On another note everyone- good news!! The council rang me back today with a solution to my boxes dilemma!!! Thanks to Michelle at Waste Management she's arranged to have me two heavy duty sacks delivered that I can fill with cardboard and if I leave them next to my brown bin the team that do my street have been told to empty them and let me have them back to use again! Tremendous news I think and all thanks to the council for coming up with that. You know rules can be got round if you try hard enough.

So ends this saga!!!

love Denise xxx

[Andy]

So glad the council came up with a solution for you, hope it works out. Good luck with dialysis.

Andy x x x