Hello! And a request for voting/feedback

[Meinuk]

I am OG IHD, and almost never am able to login, but my heart is still here!  My ESRD Network (New York State) is having a contest between dialysis center to see who has the best Treatment Options "Education Stations" The finals are narrowed the list down to the top 15 (out of 90) and I was hoping that some of you (Patient, family member or Care Partner) could take a few mins and vote and/or comment on the pictures.

Here is a link to the voting: https://www.surveymonkey.com/r/NW2QIAContest

First Vote is now CLOSED, but we had a Tie, so please vote in the tie breaker!: https://www.surveymonkey.com/r/NW2TieBreaker

To learn more about the ESRD Network Program, (A National Quality Improvement and Patient Engagement program, funded by Medicare) see  https://esrdncc.org/

Thanks!

THANK YOU ALL for voting and providing feedback.  I will post the winner in this thread in September.

WE HAVE A WINNER!!!



A Personal Update: On November 2, 2018 it will be my 10 year Transplant anniversary. I am very lucky that I have had very few complications.  I am so grateful to the people of IHD for everything that they shared a long the journey.

[Xplantdad]

I voted....neat idea!

 I also read some of your trials with MOHS. I had my first surgery at 28 years old (daughter is the transplant, not me). I've had a total of 29 MOHS surgeries so far-and more to come. Also going on Oral Chemo ( Erividge https://www.erivedge.com/ ) and chemo creams (2 different ones), blue light therapy and possibly an experimental medication as well.

I also may have a type of Gorlin Syndrome https://ghr.nlm.nih.gov/condition/gorlin-syndrome though different in a lot of ways-as I don't have all of the normal symptoms. This may be the reason for my daughters heart tumor-as I may have passed it onto her-as my dad passed it onto me...

 

[Meinuk]

Xplantdad - 29 MOHS??  wow!  So far I have had 2, and a few cryo surgeries (4 I think) which worked, but left me with many white spots.  I go in tomorrow for a biopsy on my forehead...  We are going to try topical Chemotherapy.  I still could never imagine sitting through 29 surgeries looking for clear margins.  YIKES.

And for an update on the NW2 contest - WE HAVE A TIE so, there is a tie breaker if people would like to choose between two education stations... (Or, if you are curious to see the winner and runner up - you can click on the new link below to vote or just look)  I will post the final winner as soon as we have one!

https://www.surveymonkey.com/r/NW2TieBreaker

[kristina]

Hello Meinuk and thanks for bringing these interesting displays to our attention. I have noticed in the past, how difficult it is to bring medical displays to people's attention and I do hope good results can be achieved with this voting and feedback. I also send you my congratulations to your upcoming 10 year transplant-anniversary on November 2, 2018 !
All the best wishes from Kristina.

[Meinuk]

Kristina!    THANK YOU!  It's so great to be here at IHD - it's been too long.

You are so right - Medical education needs an advertising team!  It is so hard to reach people sometimes - that's why I always want to motivate dialysis staff to TRY to make an effort to think outside of the box - even if it is just a display at first - when you are surrounded by bland walls 3 times a week it is so easy to just be discouraged...

We were hoping to light a little spark with this contest, and hope to hold more like it in the future. Just to change it up a bit..

[MooseMom]

Oh wow!  Looks who has shown up!!!  How great it is to "see" you and to hear of your successful 10 years with a transplant!

Thanks for giving us the opportunity to look at the displays and to vote!  Let us know which is the winner.

[Xplantdad]

Xplantdad - 29 MOHS??  wow!  So far I have had 2, and a few cryo surgeries (4 I think) which worked, but left me with many white spots.  I go in tomorrow for a biopsy on my forehead...  We are going to try topical Chemotherapy.  I still could never imagine sitting through 29 surgeries looking for clear margins.  YIKES.

And for an update on the NW2 contest - WE HAVE A TIE so, there is a tie breaker if people would like to choose between two education stations... (Or, if you are curious to see the winner and runner up - you can click on the new link below to vote or just look)  I will post the final winner as soon as we have one!

https://www.surveymonkey.com/r/NW2TieBreaker

I voted again. Congrats on your upcoming transplant anniversary

My daughters 29th year heart transplant anniversary is coming up on November 15th Here's to another twenty trouble free years for you...

Hope your biopsy turned out okay. My next MOHS will involve cutting below my right eye...so I will have an Otoplastic surgeon close me up...That cancer is squamous cell....most of the rest that I have are basal cells...

[GA_DAWG]

Good displays. In our area, the long time transplant surgeon left a few years ago, a really good guy. When he left, the transplant "team" went to hell in a handbasket.

[Meinuk]

Hi Everyone!  LOL MooseMom - it really is a case of "look what the cat dragged in!"  Thank Xplantdad for voting both times! and GA_DAWG, it is always sad to see a transplant center slip.  Mine actually CLOSED a few years ago - the hospital was bought, and my transplant surgeon is no longer doing transplants - which is a HUGE LOSS to patients - he was GREAT! So, now I am 2 for 2 - my dialysis center closed, and my transplant center was closed.  Hmmm - at least I am healthy (knock wood)  Well, I get to have 2 lesions removed from my forehead next month - I'm calling it a free facelift. But I may have some more scars to add to the old scar thread here on IHD.

Love to all - and especially to those who were in the trenches with me back in the day.  And those special "you know whos" who realized that my profile picture is also my work ID picture....  LOL I'm not really on the DL with my job, but I try not to ruffle too many feathers!

[Meinuk]

And just to make it official:  We have a winner!! (I will add more info as it is written about more)