Meeting Dr. Muczynski

Even though its taken several posts to get through this first part of the story it all really went by fast.  We found ourselves back at the hospital waiting for our first visit with Rob's new/old doctor.  He had seen Dr. Muczynski 15 years ago, but I had never met her.  From the beginning Rob told me how much I would like her.  He said she LOVED tests and would put him through the ringer to really understand what was going on.  We had been in and out of the UW hospital so many times over the last week so it was hard to go back yet again, but in we trudged through the construction and to the check in counter.  Deep breaths, pull out ID, insurance card, pay the co-pay, sit and fill out paperwork.  It was slightly comical as we had just gone through this same process at the other clinic, and if I wanted to I could imagine this was a normal check up.  We sat chatted and waited.  When we were finally called back, it was still like any other check up.  Weight, blood pressure check, lots and lots of questions (many we had answered several times already.) So more waiting and finally in walked Dr. Muczynski.  She is tall with short grey hair and a winning smile.  She walked in with this small folded 3X5 card with handwritten notes on it.  She smiles and says well hello there, and proceeds to introduce herself to me.  Then very frankly looks at her notes and says, "the last time you were here your numbers were steady at a 3 so what happened?"

Then she sat and listened.  She smiled and nodded when Rob explained about insurance.  She never was accusatory or upset she just listened.  When Rob was done she then looked at her worn paper again and said, "well lets talk about our next steps."  The past was the past, the good news was he was seeing someone again and he hadn't waited to long, we still had a bit of time to start moving in the right direction.  Then for the first time I actually started to learn about what Rob had been going through for years. 


Rob's sister had sent him this stuffed kidney, and from the moment it arrived until we started to really feel like our heads were back on straight it went with us.

Dr. Muczynski smiled she thought it was really cute, and then in all seriousness said, "well yours are bigger."

My first reaction was "wa, huh, how, uh, whose it, whats it . . . "  How does someone have kidneys that big in his body, I didn't believe it, which I think she knew because the next thing she did was have us sit and look at the CAT scan from his hospital stay.  We start at the back, look the kidney, then we move to the side, look more kidney oh, and there is the rupture that was bothering you.  You could see his kidney's from all sides.  The estimate is 25 centimeters per kidney.  As we continued the appointment the questions became those of how was his appetite, did he get full quickly?  He is one of the few men who can actually empathize with a pregnant woman.  His kidneys had done what the baby usually does which is take over the majority of his body.  His other organs were being pushed out of the way.  I smiled and said that and Dr. smiled back saying I had hit the nail on the head.  Three years ago when I was pregnant, as mentioned prior, we went on the diabetic diet.  The nice thing about it is that we both dropped quiet a bit of weight.  The one thing that never went away no matter how hard he tried was his gut.  I knew he was self conscious about it and now we knew why it never went away.  It wasn't a beer gut but a kidney gut.  We got over the main shock of that and then started talking about what was next.  We were fast tracked for surgery before the end of the year (a Christmas fistula) and hopefully his kidney function would give him enough time to let it mature so we would avoid a neck catheter for dialysis.

We looked at his kreatinin number, that 7 that had rushed us to the hospital.  The number that in Robs world was the end.  She then surprised us and gave us a new number.  With how well Rob he still had enough function that in my mind it was total kidney failure, we could still imagine things were "normal."  He didn't have water retention (they checked that by looking at his ankles)  He was still producing enough urine, and though some of the filtration and other kidney functions weren't as strong, she felt he could actually go much higher.  We were going to be CLOSELY watched but with his height (6 3) and the fact he was in good health "we could go up to a 12"  To me that was a HUGE jump.  I still didn't understand how quickly that number could rise, and I'll admit part of me was hoping it was still going to go down, but this made me realize that my mantra of "its serious but not dire" was actually true.  We had a tiny bit of room to breathe.

She then started talking longer term.  What we had to do to get him listed for a transplant, and the fact that he would need to have his kidneys removed.  For me this was logical, scary but get rid of the things that gave him such pain.  For Rob this was much harder, to not have any kidneys got him.  This was the first time I watched Rob check out.  He started thinking months from now to the next "someday" moments, and I was stuck in the present trying to figure out this one.  When to get the surgery scheduled, how to take care of child care, what I needed to tell work.  It was at this point I started to learn about my role in this as the advocate.  No one can do this alone!  You need two sets of ears and two brains working out whats next, and what questions to ask.  It becomes this sense of checks and balances you each hear the same thing, but interpret it different.  I found often that sometimes what I heard, though accurate wasn't what Rob heard, and it would take several weeks before he came around to what was actually said.

Things were moving, the nurse came in and gave us a crash course in what Medicare/Medicaid was ahead for us, and then smiled at Rob's "impressive organs"  Not exactly what you want to hear, but this nurse had a way of making it seem not so overwhelming.  She walked us to the reservation desk where we set up multiple appointments and then we were done.

It felt like we had been run over by a truck.  Everything was moving so fast, and it wasn't even Christmas yet.  I looked at Rob and said, "Hey lets get lunch."  We ended up at U Village and ate at The Ram.  We sat and just stared at his iPhone and calender and start to work out what this really meant. We hashed and re hashed the appointment.  Then we hashed are re hashed what to do about Christmas, I was grateful that for some reason we had gotten an earlier start on things. The tree was up and many things taken care of.  Yet there was so much still to do and we were still struggling to catch up.  Then it was how do we keep this normal for the boys and what is that new normal?  We took advantage of the time and bought some holiday presents, but it was hard to be in the right mood with everything that was hanging over us.  I finally got back to work, but I still had a hard time concentrating.  I look back and wonder how I ever made it through.  I know I was just putting one foot in front of the other, I was struggling to learn about this disease and what it meant for our family.  If I'm perfectly honest I'm still just putting one foot in front of another, trying to hold on to some sense of normalcy. Of course in the middle of all this is the slew of phone calls to family about where things are, and what Dr. Muczynski had said and yes he is still able to function at a 7!  My mind though kept going back to that warn 3 X 5 card that she had kept for 15 years.  Even though it was overwhelming, and I didn't understand everything yet I felt a sense of relief.  For a Dr. to keep notes that long, and walk into an appointment like those 15 years hadn't even happened, picking up where she had left off we were in good hands!  As much as I had to be Rob's advocate, she wasn't the person I was going to have to fight for information from, or question, she was going to be on our side which for many PKD patients is a rarity. 

NEXT UP: Fistula surgery