Our Way or The Highway

[beachbum]

I feel like finding a new doctor and PD clinic but I'm not sure if my expectations are too high. Maybe it's just me. I'm new to this process. I feel like my doctors and nurses are basicly telling me, "It's our way or the highway." If I don't do exactly what they tell me to do they act like I'm not cooperating or that I don't care about my health. They've pretty much threatened to not have me as a patient just because I missed an appointment.

Here's my issues. First, I've been on PD for a little over a month. Everything seems to be going ok. My labs look good and my numbers are coming down. I was told by one doctor that I only have to come in once a month now unless there are problems. My PD nurses have me going in twice a week! I'll get my labs done on a Friday and she wants me back on Tuesday for more labs even though everything was looking great.

My problem with this is that I have a life too. But they act like since I'm not working they can just schedule me in and I have to show up. I got so sick of this I lied to them and told them I got a job and I'm working fulltime. Just because I'm not currently working doesn't mean I have no life and I'm going to just drop what I'm doing or schedule my day around them. Not only that but the costs are really adding up. I have to pay for tolls and parking. I also don't enjoy driving in downtown Boston traffic much. If you ever lived here you know why I want to avoid Boston as much as possible. If it was summer I would just take the train in but the winters can be brutal here and being anemic I don't handle being outside well this time of year.

I chose PD so that I could be independent. I want to avoid Hemo but I feel like I'm less independent. I have too many people meddling in my life and if I don't comply 100% they make me feel guilty or make me wonder if they'll keep me as a patient. If I say something, like I already did once, they mock me. 

I'm old enough to be able to make choices about my health. Doctors and nurses don't always know what's best for every patient. I understanf they went to school and have experience but every patient is different and the outcome isn't always the same for everyone. As a patient you know your body better than anyone. I think you have a right to question doctors and ask for a 2nd and even 3rd opinion. Doctors make mistakes. The entire reason I'm on dialysis right now is because a doctor screwed up. So if I don't trust doctors this is why.

Should I just shut up and comply 100%? Should I find another PD clinic? I know the grass is always greener on the other side but this is my life we are talking about. Maybe it's time I did get another opinion?

[Deanne]

Just my  - I'm not on dialysis yet, so I might not know what I'm talking about..... Look for a different center, but in the meantime, stay compliant with the center you're at. You don't want to be labeled as non-compliant. A non-compliant label will hurt your chances of getting a transplant.

[beachbum]

Just my  - I'm not on dialysis yet, so I might not know what I'm talking about..... Look for a different center, but in the meantime, stay compliant with the center you're at. You don't want to be labeled as non-compliant. A non-compliant label will hurt your chances of getting a transplant.

Good advice. That's the other part I worry about too. I have enough issues with the transplant center. A few months ago the transplant clinic had an appointment scheduled that they had made months in advance. It happen to fall 2 days after my PD surgery and hernia repair. I was in no shape to make that appointment. I tried to reschedule it and or/cancel it and nobody would let me. I also couldn't get in touch with my transplant cordinator. I finally gave up after spending a lot of time trying to get it sorted out. 2 months later I get a letter in the mail asking if I was still interested in getting a transplant. WTF?

You can do everything right and still they question you. I swear it's the hospital I'm dealing with. But you are right. I have to take that into consideration as well. It's sad that I could be put into that catagory just for looking out for my own best interests. I'm starting to feel like I have no control over my own life anymore. That alone is the worst part about kidney disease. I want my independence back

[jeannea]

Maybe it's a combination. You can definitely look for a new clinic and interview a new doctor. But in the meantime, I wonder if there is some miscommunication happening.

Have you asked why it's important to do all these blood tests? You say your numbers are coming down but maybe you're still at dangerous levels and they need to monitor you. You mentioned anemia so bad you suffer symptoms. They should be helping you with that. Ask more questions. The answers may help you make a decision.

Does your clinic have a social worker? She may be able to find a way to help you with tolls and parking costs, but only if you're honest and say you're not working and can't afford it. They are there to help you. Take the help.

As far as the transplant clinic, they can be weird about compliance. You need to get someone on the phone and explain about your surgery and make another appt. Or try another center. Boston must have more than one transplant center.

I know starting dialysis can be really difficult. But you have to stick up for yourself. You can do it.

[Riki]

Talk to your doctor.  If he says you only need to have labs done once a month, tell him that the nurses are overruling him.  That's not their job.  If you stand your ground, they'll see that you're serious.

As for the transplant centre, that's another ballgame entirely.  They have the power to put you on the waiting list, and to take you off, and they will hold it over your head.  I've been living with that one for almost 10 years now, since my last kidney began failing.  I'm currently "on hold" on the list because of the need for an ultrasound to see if there was room for a 3rd kidney.  The whole thing is ridiculous, but I had the ultrasound done.  As long as you do everything they tell you, they've no reason to say that you're non compliant.

As for your anemia, it should be being treated, if it isn't.  Something I've noticed since I started coming here a few years ago.  Americans are rarely treated regularly for anemia, as a preventative measure.  Doctors wait until hemoglobin levels drop dangerously low, and then begin treatment for the low levels. I don't understand the reasoning behind that.  I'm treated with Arenesp and IV iron every 2 weeks.  I haven't been anemic since that started.

[Whamo]

When I read horror stories like this one it makes me glad I'm in a caring environment like Loma Linda.  God bless all the doctors and nurses at Loma Linda. 

[lmunchkin]

where is Loma Linda?  Never heard of it.

lmunch

[Emerson Burick]

I feel like finding a new doctor and PD clinic but I'm not sure if my expectations are too high. Maybe it's just me. I'm new to this process. I feel like my doctors and nurses are basicly telling me, "It's our way or the highway." If I don't do exactly what they tell me to do they act like I'm not cooperating or that I don't care about my health. They've pretty much threatened to not have me as a patient just because I missed an appointment.

Here's my issues. First, I've been on PD for a little over a month. Everything seems to be going ok. My labs look good and my numbers are coming down. I was told by one doctor that I only have to come in once a month now unless there are problems. My PD nurses have me going in twice a week! I'll get my labs done on a Friday and she wants me back on Tuesday for more labs even though everything was looking great.

My problem with this is that I have a life too. But they act like since I'm not working they can just schedule me in and I have to show up. I got so sick of this I lied to them and told them I got a job and I'm working fulltime. Just because I'm not currently working doesn't mean I have no life and I'm going to just drop what I'm doing or schedule my day around them. Not only that but the costs are really adding up. I have to pay for tolls and parking. I also don't enjoy driving in downtown Boston traffic much. If you ever lived here you know why I want to avoid Boston as much as possible. If it was summer I would just take the train in but the winters can be brutal here and being anemic I don't handle being outside well this time of year.

I chose PD so that I could be independent. I want to avoid Hemo but I feel like I'm less independent. I have too many people meddling in my life and if I don't comply 100% they make me feel guilty or make me wonder if they'll keep me as a patient. If I say something, like I already did once, they mock me.

A few thoughts:

First of all, looking back at my calendar from when I started dialysis, nearly two years ago, I also saw my "dialysis ladies" twice a week at first. It quickly tapered off to once a month. Be patient. (That's why they call us patients, y'know.)

Second, remember that what they tell you to do are "best practices, " not words on a tablet from the almighty. Nod you head and repeat what they want to hear, but that doesn't mean that you have to do it. For example, one of my evil little secrets is that I never wear my mask when doing my exchanges because it's a pain and I can remember to hold my breath for a few seconds. I tell my nurses that I always wear my mask like a good doobie, though, and if I'm doing an exchange there I wear one. No infections, and they're none the wiser.

Third, Boston has a pretty good public transportation system. If you're coming in from the suburbs, park at one of the T stations and ride the T in. It's less stress, costs a lot less, and you won't be as annoyed when the appointment runs late (as it inevitably will). I live in Boston. Send me a note if you have questions.

Fourth, Boston has several hospitals that do transplants. If yours is really letting you down, switch to another. Being sick is already a pain in the ass; there's no need to make it worse with people you don't like.

[wbdoug]

where is Loma Linda?  Never heard of it.

lmunch

Loma Lind University Medical Center located in Loma Linda, California, near Riverside.

Whamo,
When were you you listed? I am also listed at Loma Linda as of April 2010.
Bill

[lmunchkin]

Thanks Bill.  I really thought it might be in another country.  Never did very well in Geography.

lmunch

[Donnie]

What you are experienccing is the fact it is more about the money than it is about your health!

The better your labs and the more often you attend, the better their overall  number averages thus the more money they get.  A simple fact of life on dialysis.     

Wait untill they start blackmailing you with non-compliance letters to your insurance if you don't just shut up and
do what they want you to do! 

And where would you complain?  To a corrupt government?