Wednesday, May 3, 2017

I couldn't make it up if I tried

I went into the clinic early today to get the extra fluid pulled off.  There is a new tech at the center (I don't think she's new to being a tech, but she's new to the clinic and is replacing a permanent tech that's been at the center for a few years).  Anyway, she stuck me for the first time today, and it felt like a disaster from the beginning.  Granted, it's always hard for me to tell what's going to be a disaster because I'm literally fearful of anyone that comes near my fistula that hasn't needled it before.   It's fucking terrifying.  She got the arterial in just fine, but the veinous needle she put in a completely new position (you can see it's the needle closest to the bottom of the photo below).  It didn't hurt, mind you, but it didn't feel right either.  It's like I could feel the tip of the needle in my vein, and it was just strange.

It's at this point where any knowledge of fistulas I have runs out.  I have to trust these people because they've stuck a lot more fistulas than I have, and I have to assume they know what they're doing or HOLY I did.  And I wish I did't, because my gut was telling me this wasn't right.

I got through the hour of UF and successfully pulled off 2 kg right away, so that was great, but 27 minutes after we started actual dialysis (cleaning), I was lying down (because my bp was low...weird right?) and sleeping (see previous post) when this searing pain started in my fistula.  It turns out that, somehow, it infiltrated (needle through fistula) and we had to stop the run entirely for the day.  My arm blows up like a tennis ball is tucked under the skin, and it is indescribably painful.

I think the worst thing for me in that moment is how angry I was at myself for not trusting my gut.  I'm confident that if I would have asked/demanded that she move the janky needle, then this would not have happened.  And they were all so blasé about it (by they I mean the clinic staff).  I know that they see this shit all the time, but I haven't.  I've infiltrated my fistula one other time, and that was my own fault because I had a cramp in my foot and stood up (stupid, stupid mistake), but I was literally just lying there, perfectly still, sleeping, and it STILL happened!!!  What am I supposed to do with that?  "Pray" that it doesn't happen again?  That's not fucking good enough.  I'm pissed.  I'm pissed because of how little I know about hemodialysis.  Or about accesses.  I asked right away for them to start training me on self-cannulating (sticking myself) because I need to suck back some control in this whole never-ending nightmare I find myself in.

And it feels like there is this weird dynamic with clinic staff when you start asking questions.  Immediately, there is a sense of defensiveness that I sense.  I realized today that the nurse in clinic (there's only one) has no idea how to run the machines.  Now maybe that's not her job, but it sure as hell seems like something she should know.  I mean, there are only 3 staff members at my particular clinic (it's 10 chairs)...there's the nurse and 2 techs.  And when you have a new tech, and a tech at lunch, and a nurse who doesn't know anything technical, feels scary.

Surely this can't be how it's meant to be.  I just wonder how many things will happen that I'll just "have to get used to" or accept without a reason.  I'm not good at that, but I think it'll save my life in this case.

This is what it looks like a few hours after I left the clinic.  I've been icing it, but I think I need to switch to heat at some point (although I'm to sure when) to help the pooled blood re-absorb.  Now, because of this, I have to go to a DIFFERENT clinic tomorrow morning at 7:30am and do dialysis since I didn't really get any today.  As a dialysis patient who has to be connected to this machine nearly every other day, any extra sessions feel like they're stealing time away from me.  My nephrologist added another blood pressure medication yesterday, but one of the side effects of it is edema (fairly common side effect with BP meds that I've avoided thus far) so now I'm worried that this extra fluid is something I'm going to have to deal with in order to have lower blood pressure.

I'll have spent ever day this week doing something kidney related, and I just want a break where the sun is shining and I have energy and am at a reasonable weight.  


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  2. Really, it is very painful. Your vein looks swelled. Hemodialysis is good process it remove wastes, such as urea, from the blood. Restore the proper balance of electrolytes in the blood. India good place for treatment. It is affordable and more reliable. There are so many online portals available where you can book doctor appointment online India and consult about your disease with experts.

  3. Unbelievable, I remembered I was once here in need of help on how to go about the problem of Nephrosis I was having, I must say those years was so frustrating, the experience was something outside the world of being normal,my wife had to join me in search of various kind of help,and the search lasted for 1 year and some months and like a dove sent from heaven, a friend of mine referred me to Dr Johnson a specialist with a difference full of knowledge, with his vaccines/medications and his advice on what to stay clear off and how to approach the problem, after one month of using his product, I was made well, I never believed there is a cure to Nephrosis, but now am a testimony.
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Catching up....

 I gotta be honest....I don't feel much like posting here lately.  So many times I start writing the post kind of "in my head"...