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She
She Member Posts: 503
edited June 2014 in Lymphedema

I've been dealing with truncal LE for almost 15 years and arm LE for about 4.  It wasn't too bad.  I had a bilat DIEP 16 months ago and my rt arm has been swollen since.  I massage and wear sleeves when necessary (especially when flying).  A week ago I had Stage 2 recon sx.  I had it at a university hosp over an hour away and was discharged early evening.  By 1am I was in local emergency unable to hold down even a sip of water.  After about 14 hrs I was admitted for high WBC.  On day 2 a 'generalist' doc came in, saw the iv in my foot and said 'that's all old school' and proceeded to explain the lymphatic system to me.  I asked if he was a breast specialist, he said no and had no idea what surgery I'd just had; so I said perhaps you should stop talking now.  He proceeded to tell me with the foot IV I'd probably throw a clot and die.  Nice guy.  I ended up with no tx for sinus/throat infection and was discharged within an hour of my 'talk' with this idiot.  I'm afraid if I try to address the lack of knowledge I'll jeopardize any medical tx I may need in the future.  BC, the gift that just keeps on giving.  Thanks for listening.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    She, when you have the energy, if you have the energy--please report this guy! The hospital should be very concerned about risk management (i.e. being sued) here, and all you need to do it send them the NLN guidelines for risk reductions, and tell the hospital that you abide by the national recommendations and that you received no care for an acute infection, which could worsen your lymphedema and put you at risk for cellulitis. As even distant infections can do that.

    I once complained about what went on during my younger daughter's hospitalization for migraines, and got a long defensive letter back from the hospital.

    I also complained about my breast surgeon's lousy LE clinic, and had a 7 am meeting with her boss, her boss's boss and all they did was close ranks and thank me for my thoughtful comments, and it proved and did nothing, but I felt I had to go on record. 

    But, it takes energy and sometimes you just have to pick your battles.

    Here's a link to the NLN guidelines:

    http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

    Hope you're feeling better now.

    This stinks and I'm outraged for you: why do we have to fight so hard against such pervasive ignorance?

    Kira

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  • hymil
    hymil Member Posts: 826
    edited February 2011

    She, do summon your energy and please, report this good fellow before he does any more damage. He works in your local, he could still be there next time you or a loved one needs treatment :( Help him to consider a new career in advertising, real estate or maybe counselling. You were one week post surgery and he couldn't guess what you had done, HALLO?? Let's play "Spot the scar"....God gave most of us two arms and two legs as well as a few other bits and bobs so that four anaesthetists can attack us at once if needed, or get two independent lines of access even during bilateral surgery (useful when you have both arms out at right angles on boards so they can match the boobies) - feet IV's are NO BIG DEAL.I mean okay i wouldn't want to go tap-dancing with a line attached, or swamp-paddling till it healed over, but laid up in bed in a nice (we hope) clean hospital?  even if they are beyond him, and there's no reason they should cause clotting problems!  Well maybe if they lead directly into an already damaged varicose vien, that would be an own goal so who would do that then. See small children, babies needing treatment, they put butterflies into their tiny scalp veins, no big deal. What was his problem? So sorry for his ego and your bad experience, I would  be unhappy letting him stay on at my local if i thought my letter could help him go. Or at least help him learn a bit more, including manners.  Yay, let's rant together!

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  • She
    She Member Posts: 503
    edited February 2011

    Kira and Hymil, thanks so much for your support and feedback.  I will address this with the hospital board as soon as I'm well enough.  I've been fighting the 'system' since the get-go.  You can imagine how infuriated I was when I was refused a bilat mx with the first and then the second primary BC.  When #3 primary reared its' ugly little head I said in no uncertain terms 'I'm driving this bilat mx/Diep bus and if you don't like it get off or I'll throw you off'.  It took 4 months of fighting and threats of topless, breastless protesters to get the bilat mx & Diep in a single surgery with the surgical onc and PS of my choice, but I won.  It was empowering.  It was my choice to wait 16 months for Stage 2 because I knew what my body needed to make it successful.  When I was kicked loose from the cancer clinic with no follow up after not getting a clean margin I followed my surg onc's advice and set up my own program.  I am so fortunate I have a GP who listens and orders the tests I feel I need, when I feel I need them.  Bless him.

    What I will do immediately is print the NLN guidelines and hand deliver them to the ward I was in last week. 

    Thanks for the prod I needed ;) 

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  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    She,

    What great fighting spirit. Here is another document to support your case, the International Best Practices for Lymphoedema Guidelines--it's a huge pdf file, but covers everything.

    http://www.activahealthcare.co.uk/lymph/pdfs/lf_best_practice.pdf

    It's literally a textbook of lymphedema care.

    Let us know how they respond.

    Kira

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