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Thread: I am new here

  1. #1

    I am new here

    Hello I posted a little introduction on another forum but since I am female I thought I would write here too.
    I am 30, married, from australia no children yet although i would love a family so all the talk of pregnancy and disability is going to come in useful later on. I am waiting to have tests because my geneticist thinks I might have mitochondrial disease (a type of muscular dystrophy) and what chance there is of either being able to become pregnant or passing it on is totally dependent on this info as it dependds what type of mito/if I have mito etc. Unfortunately the testing is just not available here at the moment at least not the testing she wishes me to have so I have to wait another 12 months.
    This forum was originally suggested to me from a person off physical disability australia because I was asking about catheters for my incontinence which has recently worsened. yesterday i went to my urologist who suggested a permanent catheter because she thinks it might help to manage it better than pads/pants are.
    The other thing I thought of while reading posts is that for anyone in Australia looking for modifications to equipment etc (like for eg a crib or baby car seat etc) anything that is not widely available to purchase even outside having children there is a organisation called TAD (technical aids for the disabled) run by retired engineers who volunteer to design and make stuff for people with disabilities that are not available to purchase. They only charge for parts, their time is free. I believe they are in every state of Australia definately in south australia. Ive used them twice so far once to make a stand to hold up my viola and second to modify a microphone for my FM hearing system so i could more easily attach it to my viola.
    from Erin

  2. #2

  3. #3
    Thanks Linda
    you dont know how to post a photo do you?

  4. #4
    Hi Erin,

    The easiest way to post a photo (that I have found) is to upload your photo to some publicly available URL (I use Dropbox for this).

    If you have a Dropbox account, the process is as easy as dragging the picture into the Dropbox folder on your local harddisk. There should be a folder named 'Public' in there, and if your right-click on anything inside that Public folder, you get a contextual menu item named 'get public link'. You can then use that link in the 'Insert Image' widget on this forum, which you will find along the top border of every 'compose message' window.

  5. #5
    Welcome to the forum, Erin.

  6. #6
    welcome erin! i live in australia as well (well half the time, the other half i'm in colorado in the states). i'm also young and in the process of planning my wedding, so i understand your concern about having kids, etc. i'm planning on finally settling down in australia after my fiance and i are done working the ski season in colorado and possibly for me to finish law school in colorado as well (though i might leave after this semester, take time off and apply to melbourne uni). do you mind if i ask where in you're from? i live in perth and that's where i was in hospital so i feel very connected there!

  7. #7
    Moderator jody's Avatar
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    do you mean a supra pubic catheter or a foley?
    Im surprised he would suggest one without trying intermitent cathing first. I would try the supra pubic procedure if IC doesnt work. the supra pubic catheter can easily be reversed.

    there is anothe procedure that is more complicated, and cannot be reversed. it is called mitrofanoff or something like that. they take a piece of small intistine, or your apendix, and augment a passege to your bladder. that leaves an opening out the belly, but you empty differently and dont need a belly or legbag.
    with the SP, you have a bellybag or legbag, and the opening for the catheter comes out just above your pubic bone. a foley is one that goes in your urethra.
    If it is a permantent condition, I would go with the supra pubic because of the simpler less invasive possibly reversable procedure.

    welcome to care cure.
    we have spinal cord injury nurses who will look in and answere your post as well.

  8. #8
    I am sorry I haven't posted for ages and ages. I actually wrote about the catheters and the issues ive been having on the equipment forum today and i was trying to find this post that i started ages ago but couldn't find it then i realised perhaps it was under a different forum and i was right!!!

    To answer your questions first: KeeLee I am living in Adelaide, australia and have done all my life!!! Ive been in same house since 1988 (long story) Great to know there is someone else from australia here.

    Jody: I was meaning a foley catheter - they call it Indwelling here. But its the same as a foley! Ive had unending difficulty with it however it has been very useful. difficult because there are pros AND cons!!!
    I did not want to trial self cathing at all because i have severe dystonia and it causes me to move and i had no clue as to how i would even be physically able to do that and neither did my urologist. I can only assume that this is all part of mitochondrial disease (which is only suspected at this time). The urologist is a bit clueless as to why i have incontinence, i just know i do and its extremely embarrasing wetting my pants several times a day and I cannot physically transfer to ANY public toilet even accessible disabled toilets and could only do this at home and sometimes i wasn't fast enough, in the wheelchair so i wet myself then too. I was using HUGE nappy pants/pull ups but unfortunately they really didn't hold the urine at all!!! So thats why the catheter was suggested by the urologist.

    She wanted me to have a long term although only indwelling (foley) catheter because she did not want to do a procedure involving being admitted to hospital, anesthetic and all of that if i did not like the catheter, she said i was in control of the trial and that I could say to the home nursing service that i wanted it removed at any time.

    So far ive had to go to the emergency dept 3 times because of the catheter, first the balloon was too small and it all escaped around it the second time i was in considerable pain (only 3 days later) because i forgot that the valve (a bard flip flo valve) was closed and i forgot to open it so all the wee escaped and the third time another 4 or 5 days later i went again in considerable pain they told me i had thrush (again) and i was discharged with cream pessary and capsule however they did NOT do a swab test. All of these times involved catheter changes at the ED.

    prior to getting the catheter, months before id had infections sinus and stuff for which i was on antibiotics and because my drs surgery has no height adjustable exam tables there was no way for him to examine me so he said i had thrush and i was off and on the creams for MONTHS!!! and also off and on antibiotics for all the infections.

    Then i finally went to a gynecologist who did do the swab test and it came back negative for everything including STIs and thrush so they are now saying ive got vaginal dermatitis and have sent me to a specialised dermatologist who only deals with genital dermatitis who i see in april. I dont know if the catheter is or isn't affecting this but the cortisone cream does help quite a lot.

    in the other forum (under equipment) i asked several questions about the supra pubic catheters the pros and cons and whether that or the foley is better and why? i was also trying to find out more about the procedure involved because i am sensitive to things like anesthetics and fasting is also a huge problem for me. it sounds like a simple procedure but i tend to get infections somethign ALWAYS goes wrong no matter how simple it is abnd stuff like that so i want to find out as much about this as i can prior to seeing my urologist again on the 19th of january.

    Again i am sorry that i haven't been here for ages but i haven't figured out how this forum or if it would send me an email when someone replies the emails remind me to go to the forum to have a look without the emails i tend to forget that the forum exists (ive kinda got some memory issues!!!)

    hope you all had a lovely christmas and new year and that perhaps i will gain some more info about supra pubic vs foley catheters soon

    thanks so much for welcoming me
    from erin

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