New 4 hour Rule!

[kevno]

Hi,

Once again the transplant Unit at the Hospital I am at, plus 3 other Hospitals have come out with another rule for patients who are on the transplant waiting list. I Quote.

"any patient who is unable to return to the MRI transplant unit within a 4 hour time period of receiving an organ offer should also be temporarily suspended from the transplant list"


I have no argument about being taken off the list if I am going on holiday for a week or two. But to be taken off the so called list for a day? if you go 4 hours away from the Unit.  I used to work more than 4 hours away from Manchester. It takes me 1 hour 10Min's to get in now, because of the traffic.


Anyway less of my ranting. Can you please let me know what your thoughts  of the 4 hour rule.



Yours always (well nearly always)

Kevno
MRI renal patient

[KICKSTART]

More red tape! So i guess we shouldnt have any sort of 'life' and apart from doing our dialysis, we should now sit by the phone every day ..just in case ! Nevermind taking a holiday , it seems we cant even have a day out now! No doubt its some 'jobs-worth' making all these rules up , i would love for them to swap places with us for a week.

[Sluff]

Just another way to make it harder. Someone playing God.

[okarol]

It probably came up because it's summertime, and people are taking vacations. I can imagine a kidney became available, and the centers are notified that one of their patients is a match. So the transplant coordinators start calling patients and get one, maybe two or three people who are not available to be transplanted as they are out of town (too far to return in a reasonable amount of time.) So they have to tell the procurement agency offering the kidney, oops, no one is in town. The agency may have scramble to locate more people to offer the kidney to, the next waiting matches. You can see how it can bog down the process. The center has most likely gotten stuck unable to match patients with kidneys efficiently and are trying to impress the patients with this rule. I am not saying it's right, but guessing at the motivation.

[livecam]

Can you please let me know what your thoughts  of the 4 hour rule.

It sounds to me like they are doing their best to minimize the cold ischemia time of the donated organ and insure the best possible outcome of the transplant.  It really doesn't sound like they are trying to make life more difficult for their patients.  I wouldn't stress too much over this one.

[RichardMEL]

You know this is very interesting to hear. I don't believe they have a rule like that down here (but it makes sense) but I happened to ask the transplant co-ordinator last year something along these lines. At the time the unit nurses were trying to get me to go on one of those dialysis cruises or on holiday someplace (I think they just wanted to get rid of me!!). Well I said to the co-ordinator so what if you're off out at sea on this cruise and a kidney comes up, or something like that. She made out that they would make every effort to get you - eg fly a helecopter out or whatever. I am not sure how practical that is of course.. but she did tell a story about calling the police and whatnot to track down someone who had been offered a kidney.

They are having a seminar next month I got an invite too. If I can get to it I must remember to ask.

[kevno]

There is another part to the letter.

"I appreciate that not all patients will agree with this, but this decision has been taken by all relevant parties within the transplant pro gramme here. This includes all the transplant surgeons, transplant nephologists." Surly they have forgotten the most important people. THE RENAL PATIENTS. This should not really bugs me like it does. But I have been back on dialysis for over 20 years now. Been on and off the list because of operations, a heart attack. Plus been forgot to be put back on the list. How many patients are going to fall through the net and not get put back on. I have only ever been called once for a transplant. 1991 got to the hospital within a hour. That was 9am in the morning. 4pm in the afternoon told I was going to have the transplant. So had pre-med . 4.05pm was told the kidney was not compatible with me.

I keep on the list, even though in my notes I have read it is very unlikely I will be transplanted. You never know. I am fed up with all the different protocols  that keep coming in without ever asking the patients what they think. I have even had to say to a doctor to turn the x-ray the right way round. Been over dosed on pain killers. So many mistakes, to many to count.

Maybe its just me who needs to have a rant. It used to take 10 minutes to get on the machine. Now because of all the new protocol. It now takes over half an hour. It does slowly get to you. Now the new 4 hour rule. Fair enough, longer the kidney is stored, the more chance of rejection. But I am sure most of us (The Renal Patient) already have enough restrictions on us without. Now saying. We can not travel more than 4 hours from Manchester or What ever hospital you are at. Without being taken off the list, then not sure we are being put back on.

I am so mad about this, because I can see a patient missing out on a transplant for being five hours away from the transplant unit or being missed being put back on the list.

[paris]

I was told that any time I went out of a three hour driving range from the transplant center, I was to call the co-ordinator.   Well, I did that for awhile.  If I am at the beach that is a little over three hours drive, I am not calling them.  Is that being non-compliant or just being sensible?   With cell phones, we can all be easily reached and probably make it to the hospital with no problem.    Good post, Kevno.  You are so right about being put back on the list.  It can easily get looked over.   I look forward to others thoughts on this.    It is a little different for me because of PRA and slim chance of cadaver kidney.   I don't wait for a call.   

[Rerun]

They (the transplant program relevant parties) have a monopoly on the rules.  They have us under their iron thumb.  They make the rules to a game they are not a player in.  They don't live on a machine to exist from week to week.  They are not waiting on a list for a life saving organ.

This is just one more reason that being able to buy a kidney would make them take a step back.  I believe it is called "Competition" and the rule of "Supply & Demand". 

They would all of a sudden be competing for our business and maybe have a new sense of customer service.

Right now they have job security.  I'd like to take that away.

I'm not going on the list.

[kevno]

I know what you are saying Rerun. We have no say, that why this letter as issed (P) me off so much. It as just come out of the blue. Like every other rule on the dialysis unit. Plus if you are waiting for a transplant. On the (so called) Transplant list. I know that some patients think a transplant is a wonder cure. I felt OK for about 4 - 5 years with my transplant. I knew it would always fail, been on list for 20 years now with just that one call. I would like that chance for a rest from the machine. If only for a year or so. That why I am on the list. To be taken off the list if you are just 4 hours away seems crazy to me.

Its just another case of the Renal Surgeons/Doctors doing with out asking the people who they work/care for THE PATIENT. Without us, no renal doctors (Wish that could come true!). I think they need to see it from our side of the fence. See how they like it. Maybe these decisions would not be made as quick.

[del]

That 4 hr rule would not work here in Newfoundland.  Transplants aren't done in this province. When you are called you have to get a flight at the nearest airport ( for us there is an airport about 1.5 hours west of us and one about 2 hours east)  then we have to fly to halifax, Nova Scotia and get to the transplant hospital!!!  Will take more than 4 hrs!!!  Hubby is not on the list thought!!  Having to travel out of the province is one of his reasons for not going on the list!!