Newly Diagnosed

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  • primekprimek Broken HillMember Posts: 5,032
    How is the healing going?
  • shannshann Member Posts: 68
    Not as I have 3 openings and have 2 pumps.  Asked surgeon why and he looks blankly at me, this happened after getting stitches out.  So have come to the conclusion that this is me for the rest of my life with pumps on either side as no one has any answers and don't seem to want to try for any (as when I do they shut me down).  But I will get by as I do. xx

  • shannshann Member Posts: 68
    Hi all, hope everyone is doing great.  Since my last post, not much has really changed.  I am on 1 pump which is an improvement.  Last friday 13th they thought the pumps had done enough and took them off ...... but as usual 3 days yes only 3 days I was back at the hospital with 5 new openings and the main one had doubled in side so the pump was put back.  Still no answers as to why it happens and no idea how to fix it or if it will ever heal.  I have alot of thoughts that run through my head like I am going to be on this pump for the rest of my life, what have I done in my life that was so bad.  I search myself for an answer daily as my surgeon won't,  Don't know why I do it as he thinks what I find is rubbish and dosen't even read it or listens.  How do you stay positive or think positive when things just keep going backwards.  Now the nurse I had for the last 4 weeks or more has now given me to another one ...... so once again I have been palmed off as no one wants to deal with this !  Not sure about anything anymore.
  • kmakmkmakm MelbourneMember Posts: 7,372
    I'm so sorry @Shann that things haven't improved for you. Absolutely dreadful. Sometimes searching for meaning in a random universe will do your head in, so make sure you give yourself a mental break every now and then. I'm holding out hope that one day things will be better. K xox
  • SisterSister Adelaide Hills, SAMember Posts: 4,189
    @shann I'm so sorry to hear that it's still ongoing for you.
  • arpiearpie Mid North Coast, NSWMember Posts: 2,872
    @shann  - that's a bugger - I hope things settle down soon.

    Hopefully the 'new head' will have a new idea for approaching the situation?  I hope so xx

    Thinking of you  xxx
  • Rosie_BCNARosie_BCNA Administrator, Staff, Member, Moderator Posts: 185
    Hi @shann, I'm sorry to hear you are still experiencing trouble with your wound breaking down and leaking. That sounds exhausting! I'm going to send you a private message.  
  • tigerbethtigerbeth MelbourneMember Posts: 523
    @shann I have been wondering how you were doing 
    sorry to hear that the troubles are still going on . I can't offer an answer but hopefully one is around the corner sooner rather than later 
    best wishes thinking of you 
    hugs xx
  • FinchFinch MelbourneMember Posts: 295
    @shann I have been thinking of you since your last post. Sorry you're still fighting a battle with healing, Sending the hugs xxxx
  • [Deleted User][Deleted User] Posts: 0
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  • primekprimek Broken HillMember Posts: 5,032
    OMG you poor thing how awful.
    I'm going to ask this...and it's probably been looked at...but have they checked you out for diabetes or any other auto immune disease that might be contributing to your delayed healing.?
    Have you considered a naturopath for ideas on anything that may boost your immune system? 
    Whats happening re your other treatment or is it all on hold?
    Have they considered an antihistamine if its fluid not infection causing the issue?
  • shannshann Member Posts: 68
    Hi
    To @primek and @Joannie.  I don't have diabetes and I have also been to a immunologist and had many blood testing for immune diseases as it was one of my first thoughts as well.  Also been to a naturopath and been on added vitimins and minerals for about 6 months now.  I will not be having any treatment especially chemo as I am now completely out of the window.  I have no infection or bacteria this is being tested all the time.  The can't believe how clean the wound is.  They just tell me that they have never seen this before and have no answers.  Need to find a dr outside of australia I think nothing seems to be looked at in this country.  Can't go any higher than the surgeon I see as he is the head man (apparently).  I also don't have any other hospitals near me, the next closest is an hour away and then I would have to find transport etc and I have no private health or money to do anything.  Thank you for your suggestions. xx
  • SisterSister Adelaide Hills, SAMember Posts: 4,189
    Sometimes the answers do come from international sources - we just don't have the population to reflect rarer reactions. Is your doctor willing to canvas specialists?
  • RomlaRomla AdelaideMember Posts: 1,904
    Now this may be a completely wild idea but like to relay a story.Many years ago I attended  a farewell party and one of the guests was a farmer well into his 60s from the Mallee who had had a major tractor accident. He told me he had been hospitalised at our major teaching hospital months because of an open wound that would not heal.

    He had been discharged with a still open wound. He started to his own hw - not easy in those pre internet days - and read about 100% pure aloe Vera and it’s healing properties. He used this product and found his wound healed up - he believed it was because of the aloe Vera.

    Every summer we caravan at the beach for a month - the first really hot day my kids get burnt badly .I apply 100% aloe Vera to their skin and overnight their burn eases substantially.

    I do not advocate using anything without consulting medical staff first.Also there is a mobile phone app many of us use called Herbs - it’s free and created by a NY Cancer hospital.It is recommended by BCNA also.The site reviews all supplements- vitamins , minerals and herbals - might be worth looking up aloe Vera on it. Here is the web address

    www.mskcc.org/cancer-care/patient-education//herbal- remedies-and-treatment

    I only relay this as I have never forgotten how happy an old bush cocky farmer was with 100% pure aloe Vera for his open wound problem.

    Aloe Vera is a type of succulent/ cactus - there are many products around that have the name on the packaging but not all are 100% nor I’d guess pure.If you do decide to try it purchase it from a pharmacy as it is more likely to be pure and make sure it is only 100% aloe Vera - no other ingredients.

    Hope this might help.xo
  • RomlaRomla AdelaideMember Posts: 1,904
    PS I understand it must be  100% pure aloe Vera GEL not the juice - there are a lot of details on the Herbs app which has information for professionals and patients. I have read on here that many doctors also consult this site.
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