Where IS everybody?

[kickingandscreaming]

Hardly any posts for several days.  I'm in a "rehab" faciility and looking for contact.   Where IS everybody?

[Athena]

I'm here! Just been a bit busy last few days. What are they getting you to do in rehab? Hope it's working for you.

[Cupcake]

I'm here too! people musta had a busy weekend.
Hope your stay in rehab is short and sweet. Best of luck.

[SweetyPie]

Sadly school started so been busy with that

[rcjordan]

Here!

[cassandra]

How are you KaS?


Lots of love, luck and strength, Cas


   

[Charlie B53]

Once finished with my Friday treatment I head South 100 miles to Rolla, MO.   I spend the whole weekend with my Wife in the Nursing Home, returning Sunday night after she is asleep in bed.

I rarely take my laptop out of my truck. So my next log-on is during or after Monday's treatment.

[Blake nighsonger]

Hello K+S,
         Thought I left a comment (Yo!!!) yesterday, but I didn't see it today.

         Charlie B53 (A Moderator) once suggested when making a comment please also try to add something Beneficial to others.   
         
           So I hope this does!


                                                                  SPEEDY RECOVERY!!!   

[iolaire]

I'm around and reading the threads.  Recently other members have been struggling with things I have no experience with so I'm mostly quiet.

On the 31st we fly to Boise ID to visit friends and drive around to some of the parks in that area.  There were talks of Sand Dunes and Craters of the Moon but I don't know if that will happen.  Right now I know we have a night in Ketchum which is in the Sun Valley area.  We should get some light hiking in and see some night sights well visiting friends.

[kickingandscreaming]

This is so convoluted that I can barely hold on to the details. 

I told the people here at the "rehab" that I wanted to go home because I wasn’t happy with the “care” I was getting.  Everyone hemmed and hawed and gave me the impression that that wasn’t going to happen. 

I made a million phone calls one of which was to my insurance (tufts medicare).  First I was told that there was no problem about transferring me to a better place (where were they when the case manager at the hospital was trying to find an appropriate rehab with skilled nursing that could and would do PD?).  She said I could go to the better place, but would have to totally self-pay and that my insurance, allowing me to be in skilled nursing, was running out by Wednesday.  Apparently, according to Medicare’s rules, I no longer qualify as someone who needs a skilled nursing facility and that the only option was for me to is to pay out of pocket or be discharged to home with “services.”  Where have I heard that before?

So there’s no place for me to go but home (which is what I want anyway).   And that I would be discharged on Wednesday.  I asked what would happen if I just walked out and was told that if I left against medical advice I would go home with NO services AT ALL.  Then, I talked to the staff here and was told that to be discharged I woulld need to get a letter of discharge from my primary care dr.  Problem is, my primary said he could never sign that because he wasn’t involved in the case.  And actually they said I needed 2 letters.  So I don’t know what happens if no one will write it.  Can they hold me prisoner forever?  So that’s where I’m stuck.  Tomorrow I will call the primary again and his case worker (who also doesn’t really. Know me)  and will talk to the Dr. That works in the rehab to see if he can sign my discharge.  This doctor who knows me best is my Nephrologist, but I don’t think she does this sort of thing.  But I will ask.

This whole thing is such a nightmare and is so stressful I am really at a loss.  In the beginning I could have gone to the better place but was told that it wasn’t in my primary’s network so I didn’t have that choice.  So I was sent to this dump and now I need to get out and there are obstacles to that, too.  If all my “morbidities” don’t kill me the peripheral BS and our really messed up medical (insurance) system will.  The fact that I do PD and that I need any institution that I go to to offer that is a real problem.  I can't fix my knee or my heart because I need to go to a place that can do the dialysis and there are only 2 around here and only one that I'm "allowed" to go to.  This really sucks.

[Charlie B53]

I don't know when, but years ago hospitals decided our Primary wasn't good enough,  some Primary Dr's weren't 'authorized' to practice in hospitals unless 'approved'.  So hospitals decided to appoint a 'Hospitalist Dr' to care for all admitted patients.

These Dr's don't KNOW us, they have a very incomplete record they make decisions from, sometimes causing more problems.

I go to the Columbia MO VA Hospital.  I've been going to the VA for over 45 years.  When I had my peritoneal infection I couldn't breathe and had to go to the nearest.  OK Fine.  But they knew NOTHING about treating a PD Infection and no matter what I told them they insisted on putting the antibiotic in my arm while the infection was raging in my belly.   I squawked long and hard until they transferred me to the VA the very next day where we immediately drained  or tried to but by then it was so thick and clotted it wouldn't come out.  We had to ADD 2 liters and let it soaok an hour to thin out enough to come out, like gravy, so we could begin filling with antibiotic dosed fluid. 

I K&S I hope your Neph has privileges at your current hospital.  If so talk to him first, maybe he has the pull with the Hospitalist to either get you transferred or discharged home.

Good Luck!

[cassandra]

Dear KaS, I’m so sorry to read this, what a ridiculous situation you find yourself in, not even mentioning the pathetic system in the US of A.


I'm in no position to advise nor help you, but really hope your neph can help.


Lots of love, luck and strength, Cas

[Michael Murphy]

Personally I would contact a lawyer and the state insurance commission, plus a call to CMS.   Since you seem to be being held against your will possibly the ACLU would take your case. 

[iolaire]

She said I could go to the better place, but would have to totally self-pay and that my insurance, allowing me to be in skilled nursing, was running out by Wednesday.  Apparently, according to Medicare’s rules, I no longer qualify as someone who needs a skilled nursing facility and that the only option was for me to is to pay out of pocket or be discharged to home with “services.”  Where have I heard that before?

I hope this means you will be out today since the facility will no long be guaranteed payment.

A similar thing happened at the hospital when I started dialysis. I was in the hospital for about three days extra well we were waiting for dialysis placement at the center I knew I would be accepted at but “don’t worry insurance will pay for the hospital room for a week”. My wife was trying to raise hell for me but I don’t think it helped much. Maybe I was released in the first few hours of the third day. 

This was a complete contrast of the patients who they were trying to get into long term care when I arrived just as a storm was about to hit.  They were doing everything to get those Medicare patients out off rooms before they ran over their max stay and the payments stop.   I could overhear the social workers and they were even trying to get someone on a plane as the snow storm hit to get that person into a care facility in Connecticut somewhere near family. 

[MooseMom]

I am here, on holiday, in a vacation condo with very limited internet access, so apologies for not being able to respond before now, K&S.  I am sorry you are going through all of this and wish better things for you.  I am also sorry that I cannot respond further but wifi can cut out at any moment.  I love you and wish I could have a magic wand to make your world much brighter.

[kickingandscreaming]

I left "rehab" yesterday--was discharged as my insurance for a "skilled" nursing facility ran out.  I'm home now.  It's hard but I'm managing.  No food in the house, though. So last night I had eggs and a bagel which didn't appeal to me so I didn't eat.  Then there was nothing for breakfast either so I haven't eaten for awhile.  This afternoon, a friend did a food shop for me so I have some stuff, probably nothing to nibble on.  One silver lining to all this is that  have lost around 4 kg that I needed to lose.  Not a great way to do it so quickly and basically from being starved with inappropriate meals for my "conditions."  I also seem to have lost most of my hair.  It's leaving rapidly.

The thing that bothers me the most is the way that PD makes it nearly impossible to go to rehab.  Almost none of them can do PD.  I have a bad arthritic knee that needs repla but a knee replacement requires quite a bit of rehab and would certainly make it very difficult to live alone and recover.  But if I can't find a rehab place that does PD, then I'd have nowhere to go for rehab.  This is potentially a problem for ALL people who do PD. 

Does make it unconscionable to recommend PD to anyone?

[iolaire]

kickingandscreaming I sent you a PM that hopefully went through.

[Cupcake]

Dear K & S- glad you got some food! many grocery stores will deliver now, so hope that could work for you.

I'm afraid I have another  thing to tell you--somewhat diasppointing--I needed a knee replacement too before I started dialysis but they said no as I was in heart failure due to CRF; I felt better on PD so asked to get that knee taken care of, but my orthopedic dr at Northwestern in Chicago said no joint replacement when on dialysis. I was so mad/sad as I wanted to get it done!

Best of luck-hang in there.

[kickingandscreaming]

no joint replacement when on dialysis.

That is indeed troubling.  I would certain want the option to have it.  I believe that Simon Dog had a replacement while on HD or PD.

[Riki]

My mom was told 10 years ago that she would need both her knees replaced within 5 years.  She started taking omega 3 supplements (seal oil caplets from a company in Newfoundland) and she does better walking than I do.  I asked my dietician about taking them myself for joint issues, and she said it probably wouldn't hurt.  I took them for a few months and didn't see any difference, but then, we all react differently to these things.

Mom swears by them, and she got a couple of the nurses at dialysis taking them too

[Simon Dog]

no joint replacement when on dialysis.

I had a hip done when on hemo, with a great outcome.  But then, my hip was disintegrating and really bad stuff would have happened if I left it untreated. When the surgeon called my wife after the operation he asked "did he really walk into the hospital today?" because it was so far gone.