Update On Meet with the Doc

[The Noob]

good news! met with doc at clinic today. he was precious, we covered everything i could fit in, i had my laptop there to remind me. he talked to me with intelligence and respect and has the best bedside manner.

he was not happy about lack of precautions for ems or any other transport and this is changed immediately to minimum gloves and mask and clean cot. he even added that he doesn't want transport personnel in the unit with muddy shoes..LOL..i had a pdf on cdc regs and their company policy, but didn't need it.

discussion on communication with nurses/techs: resolved issue.
vaccine issue resolved, no not mandatory. though he did tell me it would only raise PRA levels about 3-4 points?

much more but i can say it was a great meeting! he said was impressed with knowledge and advocacy.
also, no more than 3 kilos at a time to be taken off, and no prob rob on the tegaderm. (i bought more online, 20 for $8.50).

even better, he is in the mix with transplant team and will conference with them to get going, we aren't the only ones having issues with them.

i began discussion with much praise of him and everyone. felt we could resolve issues quickly.

note: no, at least here, you do not need to be on the list for a month to receive a transplant with a living donor.  its offered but is two separate areas. there are many at the clinic on their second transplant, some from other states, and report this is not the case where they had theirs either. if you have a living donor you can opt out of list. its the patients choice. (we opted to be on list as well just in case).

one of the best things about today was that it was clinic day, every patient and family member sat with us at one time or another in the lobby and we had a mini support meet. what a ruckus! laughing, sharing, everyone opening up, talk about family! DH sat with us 30 mins before he went back and then afterward.

my buddy there whos worked with me to start support group and advocate for others, has gotten the wifi up and running. we both brought our laptops in. we were able to do some research and so on for who wanted it.

there is still ongoing discussion of privacy curtains. and though they can't provide a coffee pot, we are allowed to bring in our own from the convenience store. and! new furniture is being ordered!

i think thats all of it. it was a good day! i am cooking dinner and want to say that i planted rutabagas from seed and they are huge. was told these can be used instead of potatoes. we like them, thought i'd plant and see.

so, while i rarely "freak out", today i am because i am so pleased! i do thank God for giving me the backbone for the task. when we leave there, i want to feel i have done something to improve whatever i can, even if its something small. 

[MooseMom]

Sounds like you had a wonderful, fruitful day!  Good for you.

I'm interested in the coffee pot.  Are you all wanting a coffee pot for the reception area or for the treatment area?  Do you mean something like a Mr. Coffee?  I just thought that maybe you all can start a collection and buy one.  Any small nicety is very helpful!

So glad you were able to discuss some issues with a doc who seemed to be very engaging.  Well done!

[The Noob]

good point Mom! well, every clinic we've been to had a coffee pot. herein lies the dilemma. renal patients are on restricted fluid. and the issue of liability of someone got burnt. i was so happy to all the other changes i figured we'd let the coffee pot slide and just bring our own. i usually bring in hot cocoa for others and coffee for me.
thank you Mom, your a peach 

[MooseMom]

Oh, yes, I can see where having a coffee pot sitting out in full view of patients who have to restrict their fluid intake might border on the cruel.  The liability issue, though, seem a bit over the top.  Still, there is something nice about having someone (notably, you!) be considerate enough to bring in hot drinks for others.  It fosters a feeling of support.

[Poppylicious]

Wow, what a constructive meeting/day!  You've done really well Noob - you must be so proud of yourself.  Keep it up!

 

[The Noob]

thank you all for your support, i think that me being willing to pry those doors of communication open, helped others to step up too. i was most impressed with the Doc and his willingness to keep the door wide. he was tickled as he had seen the big positive review i wrote for him online.

LOL we got nasty looks from the nurses all day who seemed annoyed with us for our little party. everyone else was laughing and feeling a unity, even those in wheelchairs who often sit in the corner waiting for their ride, we brought them over to the circle and included them. this might be all they get in between and dang it i will see a smile and feel like a burden has been lifted even just for a short while.

Mom, we have a patient at our clinic who had his first tx about 7 yrs ago at chicago. he had many good things to say, also that the criteria was not quite as stringent as ohio. his advocate at the time lectured him constantly about vigilance with his care, and she worked at the hospital. his tx failed after a year because he has a rare blood type but they have come a long way in 7-8 years. he now has a new donor but has some of the same issues as we do with trudging feet and no return calls.

oh, we also set up a phone chain/prayer chain last week and have used it once so far. it worked flawlessly. we have email and website for the group too. i set that up and manage it, will need to find someone else to take over when DH has tx.

last but not least, i had the morning off for good behavior and went to thrift shop, got great deals!
  to you all..

[MooseMom]

You know, Noob, I think it's great that you have taken the time, effort and care to DO something to lift the spirits of people at the clinic.  We can't always just wait around for someone ELSE to help.  ESRD, like many chronic illnesses, can lead to such loneliness; I think this is one of the hardest things about being ill.  Anything that makes you feel that some other human being on the face of this earth gives a crap about you can make all the difference in the world.  It would have been so easy for you to just throw up your hands in despair and frustration, but no...instead you worked hard to make OTHER people feel better.  You are a true wonder, and anyone who comes into contact with you and your support group is damned lucky.

I think if we show a desire and a willingness to be open and communicative, more people than you think will respond.  Sometimes you just have to give someone the chance to show their true good nature.

[The Noob]

  MOM

"Like me, you could...be unfortunate enough to stumble upon a silent war. The trouble is that once you see it, you can't unsee it. And once you've seen it, keeping quiet, saying nothing, becomes as political an act as speaking out. Either way, you're accountable."

Arundhati Roy