Hmm, it takes me 5 minutes to do what they can't accomplish in a week!

[Sara]

Joe has a toe that's bothering me.  With him being diabetic, you can't be too careful.  He was already told at one dialysis clinic that it was nothing.  Hello, it's pus-y and swollen and it's been that way for 3 weeks now.  It is past the nothing stage.  So we call up his nephrologist's office, ask if that doctor wants to see it, or if he can recommend a podiatrist.  They (the office peeps) tell me to call the dialysis center where he was at that moment and tell them to look at it and call them and tell them what it looks like.     Did they not understand when I said there's pus and it's swollen and been like that for a while?  Was that a difficult concept?  Anyway, they look at it and tell Joe, it's nothing, just have it looked at next time you see a doctor (which, as far as they know, could be 2 months from then).  The doctor's office tells me they are working on getting Joe to see a diabetic foot specialist.  (I thought it was nothing?  )  That was last Tuesday.  No word on Wednesday, Thursday or Friday.  I call up today (almost a week later).  "Oh, we've been really busy.  We're still working on that."  OK, well what doctor are you sending him to?  "Oh, we were just going to call across the street to get him in."  And this takes a week to do?  I get the number, have a nice 5 minute conversation with the receptionist at the foot clinic, and he has an appt for Wednesday.  Was not difficult at all!  If it were up to them, his foot would probably have rotted off before they got it taken care of.  Idiots.

[Rerun]

You are absolutely right Sara.  You might need to exaggerate a little to get their attention.  Use words like.... "streaks going up his leg" and "is it normal for it to be green"?   What is with these people??

[Epoman]

Good for you. I am so glad to see that Joe has someone as supporting as you. Sometimes patients need to take matters into their own hands.

[Sara]

You are absolutely right Sara. You might need to exaggerate a little to get their attention. Use words like.... "streaks going up his leg" and "is it normal for it to be green"? What is with these people??

LOL 

Good for you. I am so glad to see that Joe has someone as supporting as you. Sometimes patients need to take matters into their own hands.

If by supporting you mean bossy and a pain in the doctor's butt, that's me.  It's actually kind of fun to call them on their BS. 

[kevno]

I know what you mean about doctors.  I am always questioning then.  You never take for granted what a doctor says are even does.  That is if you get to see a doctor, the doctor comes down our unit faster than road runner. BEEP! BEEP!

Kevno
(Doctors wanted, hopefully alive when caught!)

[Oldtech]

Diabetic foot checks should be an on going daily task.  Reading all of your post, I am having a very hard time wrapping my mind around what I'm hearing you guys are having to go through.  I would love to be able to walk into these facilities and do a survey.

I would be having their provider number pulled and a long list of deficiencies that would have to be corrected before their reimbursements began again.  Sometimes, that's the only way to get their attention.

That's what I do for a living now.  I go to facilities that need help and assist them on being compliant and current with all regs.
But as you can imagine, very few facilities are willing to say they need help until they're facing being shut down.  I wish I knew how to change that, but I don't. 

Every facility should have a patients grievance committee.  It's actually a regulation from CMS (Centers for Medicaid Medicare Services).  If your facility does not have one, request that one be established.  Don't go through the nurse manager, go through the administrator of the facility.  You or your family members have the right to request a meeting with any administrator to address your problems or complaints.  That's part of their job and they get paid well for it.

Remember, what out the patients, there is NO facility.  You guys have a lot more say so than you are being lead to believe.  It's your treatment and your quality of life that we're talking about. 

I will post the CMS site for those that do not have it.  Most important!  Your facilities are required to inform you (the patient) on how to contact the CMS if you have a grievance or complaint.  IT IS A REQUIREMENT.  You have the right to request a facility be surveyed by the state if you truly believe it is not providing adequate and safe patient care.

[Rerun]

Sara - how did that foot appointment go.  I know it was a long time ago.

[angieskidney]

Ya I am curious about the foot too because there are 2 people on my shift in dialysis that have lost toes (one lady lost ALL her toes on her left foot now because the nurses and doctors wouldn't listen when she became worried over just a small black spot that showed up suddenly. The next day it was a huge black spot and 2 days later it was too late for her foot).

[sandman]

Just goes to show that sometimes you have to take matters in your own hands because quite frankly, no one else is looking out for your better interests.

[Sara]

It was definitely infected (so much for it being "nothing" huh?).  The diabetic foot doctor used a scalpel to cut through the skin (it was dead skin I guess) to 2 different little pus pockets (sorry if TMI, but this stuff fascinates me), wrapped it up, had him wear a special boot thingy instead of a regular shoe for almost 2 weeks, and was on antibiotics for a while.  It cleared up, and I check his feet when I remember, but we're not doing it every day like we should.  Also at that visit they did xrays and saw he has some calcified blood vessels in his feet.  They started him on 2 different types of therapy for his legs to get the blood flowing better - 1 is sort of an electro-shock to the muscles in his legs and is covered by Medicare, the other is a special boot that squeezes the blood back up to get it circulating - that is not covered and we have to pay out of pocket for that to the tune of 800.00 per month!  He's supposed to do this 2 days a week (his off-days from dialysis) for 3 months and then re-evaluate, but he hasn't been going twice a week like he should because stuff happens.  I'm hoping this month he will go regularly.

Anyway, that's the long answer you probably didn't want or need.   

[angieskidney]

good thing you pushed. It could have been a lot worse as I have heard how it goes if it goes untreated!

[Bajanne]

This is scary.  I have a dark spot about the size of two quarters that appeared on one of my feet.  I showed the doctor and he didn't seem to think it was anything to worry about.  Now I am worried.

[angieskidney]

This is scary.  I have a dark spot about the size of two quarters that appeared on one of my feet.  I showed the doctor and he didn't seem to think it was anything to worry about.  Now I am worried.

Crap! Are you serious?? If you are diabetic I would get that checked right away by another doctor who takes it seriously!

[sandman]

This is scary.  I have a dark spot about the size of two quarters that appeared on one of my feet.  I showed the doctor and he didn't seem to think it was anything to worry about.  Now I am worried.

Crap! Are you serious?? If you are diabetic I would get that checked right away by another doctor who takes it seriously!

Or at least get a 2nd opinion.

[Sara]

Bajanne, definitely get it checked out by a FOOT dr.

[Bajanne]

I showed him today again and he said it is just some hyperpigmentation something or the other.  There aren't any foot doctors here.  I would have to wait until I visit my home country.

[Rerun]

Could be a sign of kidney failure.....oh wait you already have that!   

[angieskidney]

I showed him today again and he said it is just some hyperpigmentation something or the other.  There aren't any foot doctors here.  I would have to wait until I visit my home country.

If the black spot grows in size .. take it VERY seriously!

[cev]

Any sore on the foot of a diabetic is SERIOUS.  I would do it if I knew how but can someone send the "OLDTECH" message to the caregivers page and maybe the general page - I think it has a lot of information we should all know

[allison]

i can't believe that dialysis staff or doctors wouldn't take any kind of foot sore on a diabetic seriously! they should know that diabetes is the leading cause of below-knee amputations. Please, anyone wanting to know more about diabetic foot care, look at the following info.

this website has a good list for standard foot care for diabetics:
http://familydoctor.org/352.xml

and there's even a book about it!:
http://www.amazon.com/gp/product/1580402496/sr=1-29/qid=1155328269/ref=sr_1_29/103-5879159-3263853?ie=UTF8&s=books

also, I know books John Senneff has written on peripheral neuropathy deal a lot with this subject:
http://www.amazon.com/gp/product/0967110726/sr=1-1/qid=1155329476/ref=pd_bbs_1/103-5879159-3263853?ie=UTF8&s=books

[Bajanne]

Any sore on the foot of a diabetic is SERIOUS. 

The thing is, it isn't a sore, just a an area of darker skin.

[Epoman]

Any sore on the foot of a diabetic is SERIOUS.  I would do it if I knew how but can someone send the "OLDTECH" message to the caregivers page and maybe the general page - I think it has a lot of information we should all know

Link?

[needlebearer]

First of all Sara...let me say I am sorry about your husbands foot.  I hope everything goes okay.  I am a tech in a not for profit unit and we address these issues quickly when they come up.  We get pt's appointments and follow up for problems as we see them or they are brought to our attention.  I am sorry your unit does not do this.  HOWEVER.  Dialysis units are just that.  Units for dialysis.  If a patient is diabetic, I am quite sure they have an internal medicine doctor who follows their care regarding insulin changes, blood sugar levels, etc.  This is the person who should be notified of these events.  Dialysis nurses, techs, etc may notify these offices when we notice something, but as a family member, why did you not call the physician yourself when you first noticed a problem?

Dialysis units become catchalls for all of our patients problems and as for our unit...we try to accomodate people.  But there are only so many hours in a day and we can't possibly deal with every health problem of every patient.  This is why you should have a primary care physician.  We actually had a patient with severe cardiac chest pain come to the unit instead of the E.R.  They were actually having a heart attack and chose us over 911.  Scary. 

Yes, we are here for the patient.  That is understood.  But patients need to take more control over their own health.  If you are the bosses...which you are...call your own doctor, report to the ER...do whatever it takes to help yourselves.  This is a partnership...which means patients and health care workers should work together...each taking some responsibility in the care of the patient...YOU.

[goofynina]

Hi Needlebearer and welcome to our website,  I am sure you have alot of important info to share with us.  Can you please go to the Introduce Yourself section and tell us a little more about YOURself.  We'd love to hear what you have to say and please feel free to post any additional questions, comments or concerns.  We also have a special section for workers in the dialysis field that you may wish to post in as well.  Looking forward to hearing more from you...

[needlebearer]

Oooops....thanks nina.  intro is posted now.  and thanks for the welcome.