Patients who don't follow doctors' orders jeopardize spot on waiting lists

[okarol]

Patients who don't follow doctors' orders jeopardize spot on waiting lists
Hospitals want to know donated organs will be cared for
2:14 AM, Sep 9, 2012   |   Comments
 
Written by
Tom Wilemon
The Tennessean

TWO WAYS TO BE AN ORGAN DONOR
• Sign up when renewing your driver’s license and make sure there’s a red heart near your photo. You must sign up every time you renew.

• Go online to www.donatelifetn.org or call 877-552-5050 and sign up to be a donor. But you also must also sign up when renewing your driver’s license or the system will kick you out.
Source: Donate Life Tennessee

Michael Holt of Nashville got rejected by Vanderbilt University Medical Center and is hoping to get accepted by Saint Thomas Hospital. Vanderbilt denied him due to “noncompliance,” a term used by medical professionals when patients don’t follow prescribed therapies.

“They said every time you miss taking a dosage of blood pressure medicine or any kind of medicine you take, they deem that to be noncompliant regardless of what the reason is,” said Holt, who is 56 and has hypertension and diabetes.

With kidneys in short supply, hospitals want to make sure the organs go to people who will take care of them. They say patients who comply with their regimens are more likely to follow doctors’ orders after transplant surgeries.

“Due to the severe scarcity of organ donors of all types, not only here in Tennessee but across the nation, patients at Vanderbilt and all other U.S. transplant centers are carefully evaluated for signs of compliance with medications, lifestyle behaviors and other factors that may affect transplant outcomes,” said John Howser, assistant vice chancellor for news and communications at the Vanderbilt hospital. “This careful evaluation process is necessary and practical so that donor organs will go to those who will benefit the most.”

Holt said he got in trouble for ending hemodialysis treatments too soon. Holt is a big man, standing almost 6 feet tall and weighing about 240 pounds, so his dialysis treatments take longer — four hours instead of three.

“If you get off your machine because you are getting sick or whatever the emergency might be, they say you are being noncompliant,” Holt said.

He thinks he was not treated fairly, but rejections are part of the process, said Dr. Chike Nzeure, a nephrologist and professor at Meharry Medical College who treats patients at Nashville General Hospital. He helps patients link up with hospitals that have transplant programs. Four hospitals here do transplants: Vanderbilt, Saint Thomas, TriStar Centennial Medical Center and the Veterans Administration hospital.

“They are going to check to see if you are able to comply with medications, if you understand the complexity of what will happen after the transplant, the fact that you will have to come to the clinic every week or every two weeks for a while,” Nzeure said. “If at any point they do that assessment and there’s any concern about the patient’s ability to follow up, they would kind of halt the process.”

However, patients who prove they are good transplant candidates can get on the waiting list at multiple hospitals — even if the transplant programs are in another state.

The dialysis commitment
Last year, only 443 kidney transplants occurred at hospitals in this state. For most people with kidney failure, depending upon dialysis becomes their reality. Dialysis generally begins when a patient loses 85 percent to 90 percent of kidney function.

Getting on dialysis is usually like starting a bad relationship with a machine. The commitment to keep on living entails three dates a week with a three- to four-hour hookup to the machine. With hemodialysis, the machine draws blood from a surgically created vessel in the forearm and cleanses it of wastes like urea before pumping it back into the body.

Some patients opt for peritoneal dialysis, which can be self-administered but requires training and discipline. The patient inserts a tube into the abdominal cavity through a catheter that delivers a special solution that can pull wastes. The solution is then drained four to six hours later. This procedure typically has to be performed twice a day.

Most patients rely on hemodialysis. Tennessee has 162 licensed dialysis centers. Thirty-four of those centers are in Nashville and its adjoining counties.

Medicare spends an average of $82,285 a year on a patient receiving hemodialysis and $61,588 for peritoneal dialysis, according to the United States Renal Data System.

This is a national hub for the dialysis industry. Nashville-based Dialysis Clinic Inc., or DCI, is the largest not-for-profit provider in the country, with operations in 27 states. In 1971, it created another nonprofit, DCI Donor Services, to help people in need of kidney transplants obtain the organs. The supply of kidneys has not kept pace with demand.

Contact Tom Wilemon
at 615-726-5961 or twilemon@tennessean.com or follow him on Twitter @TomWilemon.

http://www.tennessean.com/article/20120909/NEWS07/309090046/Patients-who-don-t-follow-doctors-orders-jeopardize-spot-waiting-lists?nclick_check=1

[Chris]

Well there's nothing new to the fact that transplant centers are selective especially when it comes to dialysis and meds missed. However there is not enough information to go by to support Mr. Holt. If it was an emergency, that would be documented in the ER report and doctors notes to why that particular med would have been stopped and the transplant clinic would understand that. At least that is what happened in my situation. There might be more to this story than what's being led on to be is my opinion so far.

[KarenInWA]

How does the transplant clinic know if you skip a med? Was this in the ER and documented? And, if so, wouldn't that be a valid reason to skip, like Chris mentioned?

When I was on D last year, I had to have a D session cut short by 45 minutes due to infiltration. I hiccupped a few times, and that caused the needle to infiltrate. This happened on the day before my D weekend. We decided to make up the time by adding 15 min to each session the following week. I also had to stop my BP meds for 2-3 weeks due to my BP being low/normal. The D nurse recommended it and asked me to call my neph. He agreed. Of course, that was probably all documented as well. On the week I went to Vegas for the IHD meet-up, instead of doing my usual 4x3 sessions for the week, I did 4.5x2 and on the last day I did 3hrs so I could make my plane. I did this, of course, with already discussed approval from the nurse and whomever she had to clear it with. I brought it up to them before that week so a plan could already be in place.

I did skip a post-tx appointment. It was less than 2 months after my transplant, but it was due to snow and ice being on the roads. We don't do snow and ice real well here in the Seattle area, so they didn't seem to mind. I think a lot of people called in that day for the same reason.

KarenInWA

[SugarBear]

This article does nothing to aid Holt on his quest to be list at another transplant center. In my opinion the author has no clue and did inadequate research to write this article.  He speaks as if four hours of dialysis per day is a lifetime when 3 to 4 hours is the average.  At one point when, I was 350 lbs and being 6'2" I was receiving SIX hours of dialysis.  No one wants to be on D at all, but we do it because we have to and we know receiving adequate D is essential.  That was one question other patients would ask me; how can you do so many hours?  Because I know how terrible I feel when I don't, just like you, the patient, do but you refuse to make the connection!

I guess I'm writing this because my mom was removed from my transplant clinic two years ago for being non-compliant.  And she made every excuse in the book, from they were lying about her being non-compliant, to they are bad doctors who don't know what they are doing.  Now with 10 years on D she is a mess continually refusing medical advice from most of her doctors and family, including those who are/where on D themselves. 

If Holt wants to be accept at a transplant center again, start by accepting responsibility for your actions that are truly your fault and communicate better with those who are trying to help!