"I am stronger than depression and braver than loneliness and nothing will ever exhaust me".
-Elizabeth Gilbert (Eat, Pray, Love)

Wednesday, February 7, 2018

Well F*CK

This has not been my favourite week.  Yesterday I met with the surgeon who will be doing my fistula for dialysis access - she was great, I really liked her and her team.  What I didn't like (HUGE understatement) was learning a bit more about the two options for dialysis and what the rest of my life is going to look like.

First we went over a few things about the fistula that I didn't know:

1) THEY F*CKING LEAVE IT IN YOUR ARM - FOREVER! I have NO idea why no one has told me this yet! Once it's there - IT STAYS! I assumed (never, never assume) that once I got the transplant, they would put my arm back to the way they found it.  This is not correct.  They do (of course) have good reasons for it:

a) They don't necessarily insert anything to create the fistula, they simply merge a vein and an artery to create an access point for dialysis, so it's not like they can go in and take out the tubing, or reverse it.

b) There is always the chance that I will need dialysis again - even if I did get the transplant, there is always the risk of rejecting the kidney, in which case I would need dialysis again; and/or, eventually in another 10-15 years when the 3rd graft (transplant) goes kaput I will already have that access instead of having to go in again to make another one.

2) In order to hook up my fistula to the dialysis machine (THREE TIMES A WEEK), they poke me with two, TWO needles into the fistula.  Two needles into my fistula...three times per week...potentially for....years - SUPER! HONESTLY?! That SUCKS!  Think of the scar tissue that is going to build up in my poor arm!

I should mention that at this point in the consultation I had this really funky giggle going on, in addition to actually saying the word f*ck a few times to my surgeon - she may think I'm insane but kept her judgement to herself nicely.

It was also at this point in the consultation that I asked her why on earth anyone would pick a fistula?!  It was at this point that she went over a few points about the catheter option:

1) The catheter gets inserted into the chest and connects directly to your heart (umm, yikes).
2) The risk of infection is higher because it sticks out of the skin.
3) YOU CAN'T SHOWER, or go swimming, or get it wet (so hello sponge baths...)
4) Sometimes they can close off and you have to go to the other side, this becomes dangerous to loose blood flow so close to your heart)
5) Scar tissue in the area seems like a bad idea to me

These are my two options.  Seriously.  Seriously.  Like honestly.  Snake in my arm for the rest of my life, or not showering, for you know a few years.  Getting poked in my arm twice per week, or not riding.  So, as absolutely ridiculous as it is that THESE are my ONLY two options, the fistula is still a clear winner in my mind (if you can even call it that).

There were lots of tears (and evidently donuts...) yesterday, but I'm slowly working through yet another mental setback.  I was saying to my mom today I really wish they had just told me ALL of the bad news at once so I had time to wrap my brain around it and get over it.  I feel like every time I get myself pumped up about needing to do this they tell me something else that is just brutal and I have to get myself back up again.

My doctors have been great about coordinating the fistula surgery with my schedule.  It will be at some point between June-August.  My plan is to take that week off work and take my dog up to my Aunt & Uncles place to recover by the lake - might as well enjoy the forced time off.

hey Hoits - hope you don't mind the self invite - Harlow & I (and maybe Wes & a sister) will see you then! ;)      


  1. Megan you are so strong!!
    You got this.

  2. You inspire me my friend. Hang in there and know that my heart smiles when I think of you and knows if anyone can do it you can ❤️ Sending you positive energy and hugs and hope this joins the universe and all the people who know an love you xox