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August 21, 2019, 10:57:11 PM

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1
I would love to go! I start manual exchanges on 9/4, and am hoping that it will be do-able. Where is everyone staying? Where will the meet-up be?
2
Dialysis: General Discussion / Re: Where IS everybody?
« Last post by MooseMom on Today at 07:06:19 PM »
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.
3
Dialysis: Transplant Discussion / Re: I Got "The Call"
« Last post by Kathymac2 on Today at 03:51:31 PM »
Thank you all for the good wishes.

Kathy
4
Dialysis: Transplant Discussion / Re: I Got "The Call"
« Last post by LorinnPKD on Today at 11:02:19 AM »
Kathy, wishing you and your donor (how wonderful to just walk in to donate!) all the best as you complete your testing.
5
How long have you been on dialysis? Off and on since 2007 (transplant in 2008 and 2013)
What type of dialysis are you on? Currently HHD with NxStage
Graft, fistula or PD? Fistula
Time on dialysis per treatment? ~3.5 hours 5x a week

Have you had low or high blood pressure problems? High - on 3 different BP meds
Do you have problems with your heart? If so what is it? murmur, but no doctor has been concerned
Have you had intestinal problems? Lost 30 lbs in a month due to toxicity from Myfortic
Mobility problems?  Avascular necrosis of the hips from steroids
Muscle aches?  yes
Blood work issues? Phosphorous runs high, PTH is sky high even with 180mg Sensipar.  Parathyroid surgery scheduled for 9/3/19
Depression?  Mood changes? Not usually
Are you on the transplant list? No.  Local surgeon won't approve me.  Working with a long-distance hospital, but need to bring a living donor into their program with me.

How do you feel about dialysis over all after being on it as a long term patient? Dialysis sucks, but it keeps me alive. 
6
Dialysis: General Discussion / Re: Where IS everybody?
« Last post by iolaire on Today at 06:13:40 AM »
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. 
7
Dialysis: General Discussion / Re: Where IS everybody?
« Last post by Michael Murphy on Today at 05:41:29 AM »
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. 
8
Dialysis: Transplant Discussion / Re: I Got "The Call"
« Last post by cassandra on Today at 05:01:09 AM »
Wow fantastic news Kathy!!!!


    :yahoo;    You are in our thoughts, positive and luck vibes on their way.


Lots of love, Cas
9
Dialysis: General Discussion / Re: Where IS everybody?
« Last post by cassandra on Today at 04:57:09 AM »
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
10
Dialysis: General Discussion / Re: Where IS everybody?
« Last post by Charlie B53 on Today at 03:55:24 AM »

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!
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