Forced to Stop Dialysis. Now What?

[Hemodoc]

Nephrologists in dialysis centers walk by completely different rules than the rest of medicine. It was quite shock to see that in person when I started on in-center hemo. It is time that they adhere to the same rules and regulations as the rest of medicine. Unfortunately, it appears that the rest of medicine is becoming more like the dialysis centers instead of the other.

[Cowdog]

I go to a FMC center but majority owned by Neph. After 5 years of sitting and watching I've determined that dialysis isn't as much medicine as it is a one size fits all "BUSINESS".

[BattleScars]

Thank you for that info to all people here on the whole legal /abandoment issue. Everyone here has to KNOW thier rights.
I have had so many written and oral(seminars) discussions with my medical malpractice company about this whole issue. We as physicians actually are in some ways at the whims of patients . The problem is the patients dont actually KNOW this and what their rights are. As doctor and patient and patient care giver I see both sides.
My malpractice company actually told us in writing that if a patient misses a visit it is MY responsibility as a doctor to try to contact the patient and try to get them back to follow up on care. In effect the burdon is on me as a doc. If I dont try to follow up and they have a negative outcome, it is MY resposibility. I am constantly getting info from them on abandonment of patients. I could lose my license and be sued.
Bottom line is that as patients and care givers here we should know that doctors cant just discharge us without a long list of follow up protocols and responsibilities for us. If we always remember that we can equalize the power dynamic. Informed consent is still the legal guarantee WE are in charge of our treatment. Doctors need our absolute informed consent for ANYTHING they do. They cannot play the power game of "I will discharge you if you dont do it my way."
Remember your rights and dont hesitate to throw them in the faces of arrogant medical people.
I just ran into this yesterday with my wife in our monthly cliinc for home dialysis . Our nephrologist HATES buttonholes and tried over and over to talk us out of using them. We refused to back down and he threatened to talk to the whole "team" about whether they were "comfortable " with us doing it. WE talked to the nurses ahead of time and worked with the social worker to see our side and our RIGHTS as patients. We won . He wont stop us. BUT IF WE HADNT KNOWN OUR RIGHTS HE WOULD HAVE BULLIED US. He sure tried 5 times to threaten us with DEATH from buttonholes. (I guess its a new form of capital punishment for malcontent dialysis patients)
Dont get walked on by doctors and nurses. KNOW YOUR RIGHTS. Patients have power but dont often know it.

Aren't we the patients the actual customers? I mean without us they don't have a job? I can't own a restaurant and tell my customers, "Don't eat the chicken parm, eat the lasagna." And they say, "No I really want the chicken parm, I don't like lasagna and every time I eat it I throw up and get diarrhea." I wouldn't go, "Sorry you had a bad experience but I happen to know what's best for you because I'm the cook and I know more about food so you need to eat the lasagna, if you don't like it you can leave my restaurant!" Guess what? I wouldn't be in business long at all. Why is it that patients can't say anything without being ruled a problem patient or not complying? And this is even more dangerous for patients that are trying to get a transplant. It could cost a patient their shot at a new kidney. It's terrible how we are treated.     

[Shaks24]

I agree with you fully. The problem is that they have leverage on us in that there are limited numbers of facilities offering services and without the services we are toast. They know this. Its truly a sad state of affairs. I am still pre dialysis but starting to feel pretty bad. Appointment with Neph tomorrow for labs and to check progress. I am scared beyond measure. I pray for strength and courage.

[Hemodoc]

I agree with you fully. The problem is that they have leverage on us in that there are limited numbers of facilities offering services and without the services we are toast. They know this. Its truly a sad state of affairs. I am still pre dialysis but starting to feel pretty bad. Appointment with Neph tomorrow for labs and to check progress. I am scared beyond measure. I pray for strength and courage.

Dialysis should not be feared. It is a blessing that has given me nearly 7 years more than I would have had without this lifesaving treatment. I am grateful beyond all measure for this wonderful technology. Embrace dialysis and learn how it works best as an optimal treatment. Take command of your treatment which can truly only be accomplished as a self dialyzor at home. Sadly, in-center dialysis can be as terrible as folks fear.

However, dialyzing at home is simply a blessing and the cheapest of all the dialysis modalities for the system.  PD is an option but the survival is no better than conventional in-center.

The first step towards independence as a dialysis patient is learning how to self cannulate. Once that skill is mastered, learning the rest controlling the machine is relatively easy. There is no doubt that doing home hemo takes a degree of dedication, but it is the only true alternative to in-center dialysis that also improves survival and quality of life without a transplant.

[obsidianom]

As Smokey Robinson said  "I second that emotion"
Thanks for that HemoDOC.

[Simon Dog]

The first step towards independence as a dialysis patient is learning how to self cannulate. Once that skill is mastered, learning the rest controlling the machine is relatively easy. There is no doubt that doing home hemo takes a degree of dedication, but it is the only true alternative to in-center dialysis that also improves survival and quality of life without a transplant.

Home treatment takes commitment and work, but is worth it.  Better menu of protocols (EOD, nocturnal, short daily, etc.); better location; no "which tech do I get today?" roulette; etc.

I don't think I'll ever stop feeling a bit apprehensive when I'm setting up and it's time to self cannulate, but a healthy fear of that part of the process will keep me careful.

[iKAZ3D]

The never ending saga continues for me. A few weeks ago I thought I was all set but now it turns out I'm being turned away because of red tape and I'm going to have to stop dialysis. For those of you that don't know my situation I'll try to explain it if you can follow but I warn you, it's mega complicated.

Back in June I got fed up with the way I was be treated at my PD clinic so I wrote an email to my nephrologist telling him if he's going to continue to stand by how the nursing staff is being treated I'm going to have to take my care someplace else. I get an email back with a list of local dialysis units that also specialize in PD and him telling me he will only treat me for emergencies for the next 30 days and by then I'll have to find someone else. I also got a nasty certified letter in the mail saying the same thing. I have only been on PD for less than 2 years and never had to transfer so forgive me for being quite naive to how this all works.

I set up an appt with Beth Israel hospital here in Boston with a nephrologist because I've been told they have an awesome kidney transplant program. I explained my situation in detail with the lady making the appt. The only catch was she didn't have any appts available until August. I figured out my next delivery and I figured I had enough supplies to get me by until that appt. So I go to the appt and I'm told I have no appt! WTF?!?! You kidding me!?!? I'm not violent but now I'm about ready to start punching holes in the wall.

Here's the deal, I found out Beth Israel doesn't see outpatient dialysis patients and they don't even have a PD unit. Now you tell me??? Alrighty then.  So now I'm back to square one with less than a week's worth of supplies. I start calling numbers on the list my last nephrologist sent me that email. They almost all lead to a Davita unit. That's fine but I now find out Davita won't even see me without all these tests within the last 30 days but I don't have a doctor. So now I'm at a complete road block. I had a social worker tell me to call Baxter and see if I can get one more order placed but my last CAPD unit placed a hold on my account. The Baxter girl was very nice and called them to see if they would authorize a delivery to get me by unit I get this straightened out and they said "No, because he's supposed to be transferring."

They don't care about their patients health. Even Davita said they are never supposed to stop care without making sure I have care set up someplace else. Now I have to stop dialysis. I don't have a choice. My wife is already contacting a lawyer.

Excuse me? This is the utmost most ignorant thing I've ever read. Can I have your doctor's number to give him a peace of my 17-year old, fairly new to swears, and express my utmost anger?