Sick as a Dog :(

[BattleScars]

Today is not a good day. My neighbor was sick a few days ago although she thought she got food poisoning. I went over to their apartment for a few minutes. Big mistake. Last night I started feeling pretty bad. Today I couldn't even get out of bed unless it was to go to the bathroom (which I did A LOT of if you know what I mean.) I know my weight can fluctuate a lot on PD but I've lost almost 7lbs in 24 hrs! The worst part of all this is today is the first 70 degree day in New England after a really bad winter. At 3:30 I finally was able to step outside and get a little fresh air.

Here's the thing though, my PD clinic is really making me upset. They constantly tell me one thing and then change it and tell me something else. One particular nurse is really bad about it. For example, I was told if I get sick at all to contact the PD Clinic first, and I wanted to today to make sure I was correct in not doing green bags because I couldn't hold down water and I was losing a lot of fluid. So I called, per their instructions, and I got scolded for not calling my primary care physician first. This nurse constantly does this to me and then writes down in my chart that I'm not complying. I've contacted my renal doctor and he just backs the PD Clinic up and tells me I'm wrong.

Another example is my phosphorus has been high the past few months. They wanted me to start taking Renegel which is pretty expensive but I broke down and bit the bullet. But they told me to take 2 Renegel capsules and 2 of my blue and white ones (can't remember the name) with each meal. Yet when I pick up my RX it says to take 1 per meal and I only have enough for 3 per day otherwise I will run out in the middle of the month. When I brought this to their attention they again acted like I wasn't being compliant with my meds! Why is it if I ask questions as a patient that I'm considered being incompliant? I am beyond frustrated with these guys. There's other misinformation I get to like what strength of bags to use, ect. But I also feel trapped.   

[MaryD]

I was in the middle of replying to this posting when my PD clinic called my to come in as I had managed an open contamination.  I laughed because I have such a wonderful clinic with amazingly helpful, informative staff, and they happened to call just as I was feeling devastated for you with YOUR clinic troubles.

Have you thought of writing down the instructions you receive, the time and date you got them, and who gave them to you, and then reading them back for them to acknowledge that you've got them right?  If you keep a diary of all your contacts and conversations with the clinic you will have some ammunition if things get really out of hand.

Is there any chance of changing your clinic?  I know that I would never ring my PCP with a question about whether I should stop using a bag or not.  He is a marvellous doctor but he wouldn't have a clue about dialysis bags.  You do need support from your clinic and the not angst you are getting now.  You should be able to ask questions.  If you don't you could end up making some major mistake.

[sullidog]

A PCP isn't going to know anything regarding your dialysis treatment, like mine for example, I needed an antibiotic today so he called the transplant center first to see if it was ok, he didn't know otherwise and I didn't expect him to either.

[Bajanne]

Have you thought of writing down the instructions you receive, the time and date you got them, and who gave them to you, and then reading them back for them to acknowledge that you've got them right?  If you keep a diary of all your contacts and conversations with the clinic you will have some ammunition if things get really out of hand.

  Absolutely excellent idea from MaryD!  Please do this from now on.

[MooseMom]

Yes, please take MaryD's suggestion and take notes about any and all communication with any/everyone on your medical team.  I've done this for years, and you have no idea how often those notes have saved me! 

[jeannea]

If you've already lost 7 lbs from being ill, you don't need green bags. You may even want to skip. Taking off more water may not make you feel better. I once skipped for this very reason. I had spent all day in the bathroom and still had to go frequently when it was time to hook up. Well that would not have worked out. So I skipped. I did my weights and blood pressures like usual just had no UF to record. My nurse supported me.

It's horrible your center won't help you. I wish I knew a good solution. Any chance the social worker or center manager or somebody would be on your side and help you work out a solution? Sounds awful.

[BattleScars]

If you've already lost 7 lbs from being ill, you don't need green bags. You may even want to skip. Taking off more water may not make you feel better. I once skipped for this very reason. I had spent all day in the bathroom and still had to go frequently when it was time to hook up. Well that would not have worked out. So I skipped. I did my weights and blood pressures like usual just had no UF to record. My nurse supported me.

It's horrible your center won't help you. I wish I knew a good solution. Any chance the social worker or center manager or somebody would be on your side and help you work out a solution? Sounds awful.

I'm giving these guys one last chance at my next appointment. I actually ended up speaking to a supervisor who was super nice and extremely helpful yesterday. I also ended up skipping most of the day but I can get away with that every once in a while as I still produce quite a bit of urine and my GFR is 5. Between being weak and having to go to the bathroom at a moments notice I don't think I could have stayed hooked up for long. I'm feeling better this morning and was able to do a couple of exchanges but I'm still running a slight fever.

As for writing everything down, that's awesome advice and I've learned to do that because I've had different nurses telling me different things. In this case they looked up the instructions in my chart and it said to take two of the renegels (sp?) with each meal and two of the other ones but they didn't even have a solution to the problem of my Rx being different. Like I said, I'm not trying to find a reason to leave but my health is too important and I'm fortunate that there's some good hospitals in the Boston area.