I need to vent!!

[Ladyhawk]

Hey everybody,
Today my husband was scheduled to have his mir to see exactly what damage is done to his heart and how bad his valve is leaking. Right now we still have HMO insurance, dam medicare has  still not paid a dime for anything(that's a whole other issue) Going between our hmo insurance to get refferals to go and have this test done was a big pain. Our hmo insurance and where the transplant will take place {when and if a kidney becomes available} are two different places with two different sets of doctors. After much pleading I was able to get the refferal to have the mir done at the transplant hospital. My husband can't have a transplant untill this damage is repaired with surgery or medication.  We get to the hospital this morning at 6:45 they take him in and then inform me his has to be dialyzed immediately after the test and again on his regular day tomorrow. They never informed me of this.  I was furious. I called them yesterday to to make sure they do not try to put the iv in his left arm because his fistula is there. {we had an issue with a technican about this for another mir} So I had to make sure it was written on his orders, they never said a dam thing. We had to leave, I couldn't have them do the test, I was not sure if I could walk into his dialysis center after the test. I went and complained to patient services and made a big stink. I also made a big stink with his transplant coordinator. What a bunch of idiots.

[Joe Paul]

Sorry for your troubles, hoping things get straightened out for the next appointment.

[livecam]

I was furious. I called them yesterday to to make sure they do not try to put the iv in his left arm because his fistula is there. {we had an issue with a technican about this for another mir} So I had to make sure it was written on his orders, they never said a dam thing. We had to leave, I couldn't have them do the test, I was not sure if I could walk into his dialysis center after the test. I went and complained to patient services and made a big stink. I also made a big stink with his transplant coordinator. What a bunch of idiots.

Ok you are upset about not being told about some of what the hospital wanted to do.  If you want him to get a transplant please do not make a "big stink" with the hospital or transplant coordinators. 

I'll just tell it like it is here.  The transplant center, coordinators, nephrologists, and surgeons are evaluating not only his physical condition but the psychological suitability of the patient and his caregivers (you) to receive a transplant.  Yea you can get mad when mistakes are made but don't let them see it.

Going off on the transplant team is not a good thing to do for anyone involved.  Vent here or go out and pound sand, whatever works but please don't go off on the transplant team in the future.  You want them to see you as reasonable people who understand the risks and benefits of transplant and who will take care of the gift once it is received.

Now...good luck to both of you!

[Sara]

   Vent away, that is so frustrating.  I agree with livecam, try not to piss off the transplant people (even though they might deserve it sometimes).  Make sure your husband knows to speak up and protect his fistula, in case you aren't there. 

[Joe Paul]

Sometime the fustration takes over, if the staff doesnt understand that its too bad.

[Ladyhawk]

Hey everyone,

Let me explain about making a big stink.  I was making a big stink because I was not told he needed dialysis after this test.  I was told 2 minutes before they were suppose to start.  I called his transplant coordinator to help me, which she did. I always do what I am suppose to do. What made me mad is that they did not iform me that he had to have dialysis afterward.
His center is full on Tuesdays and I would not have been able to get him in. We have over an hour drive to this hospital and he hates going to do tests and things as it is. When I called to reschedule his test, I was told we had to wait until next month on the 25.  After I spoke to his transplant coordinator she was able to get us in next week and I was told they had done this to another dialysis patient. How can I get the things that he needs if I am not informed properly, that is what I made the big stink about.

[Sara]

How can I get the things that he needs if I am not informed properly, that is what I made the big stink about.

That's a very valid point, and think you did the right thing about calling the transplant coordinator.  Now if you had called up cursing them out and threatening violence (again, sometimes they may deserve it  ) that's maybe not such a great way to get people to help.  But it sounds like you called them, explained the situation and they helped you. 

[kitkatz]

http://ihatedialysis.com/forum/index.php?topic=2989.0

This why they want him dialyzed as soon as possible after the MRI.

[keefer51]

I understand your frustration. Please excuse the way i say this but there is no other way. They have you and i and others by the balls. Case in point: My brother plans to give me one of his kidneys i could have recieved it allot earlier than i did. I made a big stink out of it to the transplant people. We even had a round table discussion. You know the kind where you sit and listen to their ridiculous accusations and as you answer with some authority they write down in their books patient is "Non-complient" I call that infintile masterbation. They can say yes or no at a drop of a hat. I have seen this happen. The word that comes to mind is commpassion. They lack it. They don't understand the bullcrap dialysis patients or their caregivers goes through, nor do they care.