Fistula

Its interesting to me how vivid some parts of the past few months are to me, and how some just meld together.  The next section of this story is one of those times that get mushy in my head, what happened when is a bit fuzzy but there are parts that still stand out.  We were in such a tizzy trying to scramble and catch up mentally as well as physically and I have this tendency to go into what I call "nurse mode"  My mother being a nurse I have this knee jerk reaction to go straight into the emergency mode and solve the problem only to break down once the emergency was over.  In this case the emergency wasn't over for a long while and I found myself staying in "nurse mode."  I looked at everything more clinically, and approached food, recreation, work, in a different mind set.  In some ways it was like an out of body experience.  I knew I should be freaking out, I knew that this was a big deal, but that wasn't my job.  I was supposed to be holding it all together for the family, for work, for our friends everyone needed their chance freak out, my time would be later.  This was the small surgery in the long run, we had at least two more BIG ones to get through.  I approached this week of activity more relaxed than I think people expected me to be.  I was ready for anything, or so I thought.

So what is a fistula?????  In short its a vein that is surgically attached to an artery that becomes over time the access for dialysis.  This was one of the many new terms I had started to learn in this crash course we were going through.  While we had been in the hospital they had actually done an ultra sound on his arm already mapping his arteries and veins in order to find the best place to put in this eventually life saving fistula.  They ended up only mapping one arm because they seemed to have found what they were looking for.  Rob was happy because he has "garden hoses for veins" so we had a sense of confidence that this was going to be easy, well easyish.  The big change in how we moved forward is that he wasn't allowed to have shots, blood draws, or IV's in his left arm any more, it was reserved for his fistula.  As we left Dr. Muczynski's office from that first appointment we not only set up our monthly appointments to check in with her, but scheduled his surgery, as well as the slew of pre surgery appointments. We also wanted to get a head start on his transplant paperwork so had an MRA scheduled since PKD patients also have brain aneurism tendency.

Tuesdays were pre surgery appointments.  I was nervous about taking more time off work, but thankfully my team understood.  I needed to be at these appointments, I am Rob's advocate. So back to the hospital we go. We get back to the room for the consult and start learning more and more.  One of the issues that I had seen was his creatinine number was creeping up again (it had risen from a 7 to an 8.)  The student doctor that was giving us the pre pre exam before the surgeon came in was going over the basics of what a fistula was for, why were we there, how much did we understand etc (the same stuff we had just gone over with Muszynski, as well as the other doctors we had seen over the last two weeks)  I understood why, the need to verify stories, hear it from the horses mouth, but I was getting tired of repeating ourselves.  I finally got the courage to ask this doctor about the creatinine number and how quickly it seemed to be rising.  I knew that Muszynski was going to let it rise more but waching it get higher in such a short time worried me, it meant even less kidney function then when we started this ride two weeks ago.  He looked at me and said "the jump between 7 and 9 isn't as bad as the jump between 3-5"  HUH wait a second how can that jump not be as bad? I obviously looked confused because he searched for paper and proceeded to show me a bell curve.  I was good at science back in the day (school seems so long ago) but as soon as he took the time to draw the curve and show me where 3, 5, 7,and 9 were on the curve I got it, it clicked.  This poor no name doctor was my hero of the moment, I finally had something explained in my language  It was such a relief to understand this one seemingly small thing it started to take the worry out of everything.

Then the rest of the "team" arrived.  We were in this TINY room with 4 other people the most important being Dr. Sweet, the surgeon.  It was a bit intense looking at all those faces and trying to know what questions to ask.  One of the biggest concerns raised is that even though this was "minor" surgery was lifting.  Again Rob's job tends to be a lot of lifting and moving of things and we were told he wouldn't be able to lift more than a milk carton for at least 6 weeks.  This was scary, and again I watched Rob start to check out, he was thinking about what gig's he had already booked, and how he could work around this new wrinkle in our lives.  We also wanted to know if this was a permenant change did this affect the rest of his career?  What interested me most was watching the doctors.  Dr. Sweet, like Dr Muszynski before, also saw Rob's head go somewhere else and suddenly it was all about me. The rest of the appointment the information was focused in my direction, and I was the one who would bring in Rob if I was unsure of a question.  Dr. Sweet's biggest concern was that the artery they were choosing wasn't ideal.  SURPRISE!  Rob's "garden hole veins" weren't the perfect fit we thought.  The size was only slightly smaller than ideal, and since Rob is younger, and in good shape the Dr. Sweet decided it was the best one to try first.  If this surgery didn't succeed there was another option within the same area that we would go in for at least one if not to additional surgery's to get set up.  The only problem with solution number two is that no one thought we had enough time for the fistula to mature and if we had to go that route we would probably need a neck catheter as well.  Fistulas need at least 3 months and preferably 6 months or more to mature.  This matureity is for there to be high enough flow, and stronger walls. As we got to know Dr. Sweet, we learned he was an optimist through pessimism which is right in Rob's wheel house.  There was a point I was really worried that we were going in to a doomed surgery, that's when Dr. Sweet finally said, "I wouldn't try this if I didn't think it had a good chance of success!"    We got through the basics of the pre talk, and what I remember most (besides the pessimism) was the emphasis on how this was going to be Rob's life line.  The importance of protecting the arm and knowing that there are only 4-5 chances at creating a fistula in the body.  This surgery was as life saving as the transplant sugery was going to be.

Once Dr. Sweet was done he left the room with most everyone except are sweet young girl who went over the basics of what to do prior (washing, what not to eat etc) as well as making sure Rob had a driver to take him home and the basic out patient surgery information.  One thing that hospitals LOVE is booklets of info, which as a conservation minded person and some one who works for a conservation organization that much paper was a bit excessive.  We kept getting booklets upon booklets on every topic that might be relevant to our situation.  This was no exception.  We were handed the booklet for surgery and she even showed us the couple of pages we actually need to look over since she knew people rarely actually read the entire booklet.  Finally we were done . . . with the surgeons team.  We still had to go to the pre-anesthesiologist. appointment.  We looked at paperwork, grabbed a quick bite to eat, and sat in another waiting room.

This time the waiting room was empty, and we were called back fairly quickly.  We went over the same questions again, what surgery's has he had before any reaction to anesthesia before only this time it was with a nurse.  While we were in the room Rob had a slight cough.    Since he had been given a flu shot and the super influenza shot while we were in the hospital, he had had the cough.  To be honest, its Rob, he ALWAYS has a cough.  The nurse looked at him and asked if he was sick.  We explained the situation of the immunizations and she basically said we should postpone the surgery.  I was in shock  after the urgency that had been drilled into us by every doctor and nurse we had seen over the last two weeks to be treated in this way didn't fit.  Both Rob and I said no, but she wouldn't back down.  She checked his temperature (which was normal) and then stepped out to talk with the anesthesiologist.  I looked at Rob and I was fuming, this wasn't happening.  He smiled in an attempt to calm me down.  We heard the Nurse talking to the anesthesiologist, and when she returned she told us that we were going to cancel the surgery since its an elective one, and reschedule after Rob's cough had subsided.  It took everything in my power not to jump out of my chair and punch her in the face.  I was so mad, how dare you tell me its elective surgery.  I responded "no we are having this surgery"  and Rob could tell I was losing it  It was his turn to take over the conversation.  She then asked should I page your Doctor and explain the situation?  I was vehemently nodding my head, "Yes please" with the most forced grin I've ever had.  She proceeded to call the surgeon and then in the uncomfortable silence that followed waiting for him to call back she tried to explain that with a cough they couldn't do the delicate work on veins/arteries.  There was to much potential that he would move and then botch the surgery.  I just sat there in my head still seething about the elective surgery comment.  The one shining momment in this was that Dr. Sweet called back right away and I got to hear him set the Nurse straight.  First he asked if Rob was running a fever.

"No"

"How often is he coughing?"

"Not that often,"

"Then we are doing the surgery"

"But with the cough"

"WE ARE DOING THE SURGERY"

"oh, okay"

She hung up the phone and then as if we couldn't hear said, well your surgeon wants to continue with the surgery, but if you start running a fever let us know right away.  With that the appointment was done.  We never met the anesthelogist she left the room, I couldn't stop grinning and we headed out.   It wasn't until the surgery day that I thought it odd we hadn't met the anesthesilogist. I actually went back to work to wrap some things up since it was so close to Christmas and I had an event not 4 day's away.  I was still fuming even though the nurse had been put in her place.  I had never felt such a primal anger before.  I was glad she was someone we never had to deal with again, or at least not to this point.

So we were set, Surgery was in two days, we were going to spend the night with the Grandparents and leave REALLY early in the morning.  Just take a quick breath, the hard part is still ahead.

In a quick foot note, the surgeon actually called us that night to check in see if Rob was still okay, and let us know that in a normal world the fistula procedure is consiedered more elective, most people are getting it much earlier when they still have 20-25 percent of kidney function so that it has enough time to mature.  We didn't have the luxury of knowing how long that 8 percent would hold out.

Next up:  THE FIRST SURGERY