Saturday, February 23, 2013

From patient to participant

We spent the ENTIRE day at Mayo yesterday.  We had to leave around 5:00am due to the winter storm that conveniently hit overnight.  My first apppointment was at 8:00am at the Clinical Research Center.  I had to drop off my pee and do labs, as well as follow-up paperwork from the FONT study since they're still following me.

 Then it was a whole lotta waiting.

We went to Mac's for breakfast (favorite part of the day :),

and then to Barnes and Noble to browse.  We actually managed to escape from there without buying a thing (amazing in itself) and headed over to the 19th floor of the Mayo building to wait it out.  They've got a nice little waiting area with a great view and wifi.  Izzy was SUCH  trooper throughout the whole day, considering how early we got her up.  She was happy and amiable and well-behaved....incredible.

Finally, 4 hours later, we finally got to see Dr. Fervenza.

And it was a complete letdown.  I had waited 4 months for this appointment, and I can't express my disappointment in the whole thing.  For starters, my labs STILL weren't in the system...6 hours later.  He was all happy and joking and telling stories, which is fine, as long as there's a serious portion of the appointment, which there wasn't.  I had a list of questions that I wrote down, and he essentially evaded every one of the questions or gave me an answer I found completely unsatisfactory.

During the appointment, he takes dictates his notes over the phone, and the phrase "acute renal failure" rolls off his tongue.  This was from the prograf that I was taking that was becoming nephrotoxic....but I didn't realize we were at "acute renal failure".  You see...these words sound important, and they deserve some exploration/explanation, but I got neither.

He finally noticed that my hemoglobin was low.  It's been low for months, but he only noticed this time because currently I can't qualify for his study because it's too low, so he ordered an iron infusion right there on the spot.  I think he's used to people essentially living in Rochester for a week or so during their appointments....not a local yocal who thought she'd be home by 5.  That's not entirely fair...I'm glad he did something....wouldn't it be nice to have talked through it first?

I can't quite articulate what it was about the whole appointment that had me steaming.  Essentially, in that appointment, I realized that I've gone from being an interesting patient to being a participant in his clinical study, and that feels like a big difference in the way he interacts with me.  I feel that he's only going to be interested as long as I'm fulfilling a purpose in his study, but otherwise I don't think I'd get much.

I'm rambling because I'm angry.  It's been almost a year since I saw him first, and I'm in the EXACT same spot I was.  That's good from a kidney perspective, because I'm stable it seems.  It's bad from a mental aspect (at least for me) because I still don't have a plan.  And I NEED a plan.  DESPERATELY.  Even if that plan doesn't come to fruition for years, at least it's a PLAN.  This is limbo, and as I've said before...I SUCK at limbo.

The coordinators for both clinical trial studies were present at my entire appointment, and that's all we talked about.  Not my current lab results...not what the next steps were in regards to my health.  Only what the next steps were in regards to his study.  It may not have been meant to be that way, but that's how I left feeling.

I'm glad I am getting another doctor.  I'll continue to see Dr. Fervenza because of the study, and because I want to stay affiliated with him/Mayo for when I need a transplant.  But right now, I need a whole lot more than what I'm getting in regards to the doctor/patient relationship.  I know that, for me to have the best care possible, I NEED to have a relationship with my doctor where I don't feel rushed, where I feel that my questions are valid and answers well-thought out...where I'm a patient, and not a participant.  Having a chronic illness is bad enough...I don't need to have an insufficient relationship with my doctor as well.  I don't deserve it, and I won't stand for it.

I'm not looking for new treatments, or the promise of remission.  I've LONG since given that up.  What I AM looking for is a doctor who will work WITH me to give me the best care (physically and emotionally) possible and help me create a plan of what the next 1 year or 5 years might look like.  Hell, I never even got to have the conversation with Dr. Fervenza about Joacim being a donor...I felt like I was hanging on to the hems of his pants trying to keep him in the room.  That's never a good feeling.

Ugh...I'm just so damn disappointed.  I may look back at this post and think that I'm expecting too much, but I doubt it.  I'm trusting my gut on this one.

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