Transplant at the U - Appointment #4

I'm finding it harder and harder to get my thoughts out on "paper".  I've started this blog post a few times now, and each time I just quit because I don't even know where to begin.

I had my 4th appt at the U on Friday for a 1 on 1 education session regarding dialysis options.  This was something I feel I had to ask for, meaning not something they were considering doing automatically or at least not right now.  Which makes me angry and completely confused.  You know...as I'm going through this whole transplant thing, I try to put myself if the position of someone who's less informed than I feel like I am, and it's honestly frightening, because even in my "informed" state, I feel like I don't have a clue as to what's going on.  The worst thing for me is for someone to actually take an interest in my health, ask me a question, and all I can say is "I don't know".  UGH.

So I had my education session, and it was good because I came away knowing more than I went in.  There were, however, some language issues that made conversation difficult, so I mostly just sat there and listened.  Every time she'd ask me, "Do you have any more questions?" I would tense up, thinking..."Is that it?" (she actually asked this 5 minutes in, so I was REALLY worried).  I conveyed my fears about the fistula, which I felt she disregarded, but I did learn that it was more the graft that I was terrified of rather than the fistula.  At the end of the appointment she asked me if I wanted to schedule the ultrasound or surged (hell, I couldn't actually understand which one she was asking) and I was like...SLOW THE HELL DOWN.

Ummm.....I'm not ready to schedule an access surgery.  I JUST LEARNED WHAT THE HELL MY OPTIONS ARE!!!!!  I have no idea how I'm going to decide, but seriously, is this the way it's done?  If so, I'm not having it.  I'm not going to be subjected to what I feel is a sub-standard level of care.  You can be the best medical institution on the planet, but if you can't convey a feeling of competency, knowledge and understanding to me, the patient, then there's no trust, and a whole lot of anxiety, which is what I'm experiencing.  I ended up getting the phone number of someone to call to help me set up an in-unit dialysis visit to a center, so I can see it for myself.

After that was done, I apparently was scheduled for a shot of Aranesp.  I sat in the waiting room for 10 minutes, which is usually fine, but I honestly wasn't sure if anyone was coming because things are so damn loosey goosey there.    The nurse asked me if this was the first time I'd had the shot, and I said no and she was surprised because she didn't have it in her records.  Well, of course she didn't because I didn't have it done there, and this wasn't anything they ever asked me.  Guess it wasn't that big of a deal because she gave it to me anyway.  Once she left the room, I wasn't sure if I was done (hey, maybe another mysterious appointment was expected of me) so I went out to the check-out area and asked the woman there if I was done.  She first said yes, then said "wait" and "what's your last name", which I gave her, and without looking anything up, she said I was free to go.  Ummmmm....I'm pretty sure she had no idea who I was just by my last name, but apparently it was easier to let me go on my merry way.

Then, at 5:15pm, I got a call from my coordinator.  She actually said that she had overheard one of her co-workers telling someone what it means to be listed, and that's when she remembered that she had to call me.  Good think that coordinator was doing her job because mine sure doesn't seem to be.  While on the phone with her, she confirmed that I'm officially active on the list (should've been done in August, but who's counting?  Oh wait...UNOS IS!!!) and then proceeds to tell me what to do if I get a call over the weekend.  I'm like...WHAT THE HELL????  AM I SUPPOSED TO BE WRITING THIS DOWN?  I'VE NEVER HAD A PROPER MEETING WITH A SURGEON!  WHERE THE HELL IS THE HOSPITAL (my appointments are at the clinic, not at the hospital, so I don't even know where it is).  Anyway, a gazillion questions going through my head, and she's painfully (and by painfully I mean completely disoriented) explaining things to me.  I had asked her if she could push back the microphone of her headset because all I could hear were the "P's" and it was like someone blowing into a microphone) but in exchange for relief from the P's, I couldn't hear 50% of what she said.  I asked her if she was going to send me something in writing, and she didn't seem to be prepared for this question either, and started rambling about a document that she could put together for me.

Side note:  This woman is not malicious or bitter in the slightest bit.  I realize when I write that it may sound that way, so I wanted to not that she IS NOT like that at all.  She's just constantly spacey and unorganized and confused-sounding.

Today I got a call from the U saying that the doctor wanted to put me on Vitamin D (guess he didn't look at my medication list to see that I'm already taking a supplement).  Then I got a call from his nurse telling me that, based off my labs last week that I have plenty of iron stores for the Aranesp to work with, and to stop taking the ferrous sulfate.  I told her I wasn't taking it, and hadn't for over 6 months.  I also voiced some concern about the dialysis access coordinator telling me that I needed to decide about an access "soon" and asked what "soon" meant.  Did that mean 2 weeks?  Did that mean 6 months?  No one seems to know, but the nurse said that my doctor would know more at my next appointment, so I guess I have until the 20th to figure that part out.

The number of times information has been incorrect, assumed, or forgotten throughout this short process so far is unexplainable to me, and unforgivable.  I called my coordinator's manager and asked for another, and I also called Cigna to see what, specifically, I need to do to get my care transferred to Mayo.  I also sent a message to the nephrology group via the Mayo web portal, and called and left a message for Dr. F at Mayo to help me figure out what I need to do on that side.  So, I guess for the time being, I'll continue to try to get things switched to Mayo and work to further things along with the U as much as I can.  It's going to be difficult, no doubt, but I feel it'll be worth the hassle in the end if I have that trust back that I have with Mayo.

Another side note:  I'm sorry if these posts are rambling and riddled with grammar/spelling/punctuation errors, but I never proofread them before I hit the "publish" button.  I'm always afraid that I'll censor myself if I do, and I really want the thoughts and emotions to be raw.