Thursday, October 15, 2015

3 weeks left but switching to hemo

I feel the need to apologize for the length of this post.  It was September 22 since the last time I checked in, and so much has happened since then (mostly in the last week).

Last Tuesday, I drove down to Rochester to have labs done.  I'll admit that it's not awesome having to drive a total of 4 hours just to have blood drawn and pee in a cup, but it's better than trying to go to a local lab and having issues actually getting the right results.  You'd think that these would be standardized, but that doesn't seem to be the case.  I was so tired on the way home that I stopped at the Ikea parking lot at MOA and took a 1/2 hour nap.  I've been feeling like that a lot lately...just wiped out.  I checked my labs later that night and saw how terrible they were (creatinine 17.2 and albumin unchanged at 2.6) and my heart just sank.  I was sure that my team at Mayo was going to ask me to switch to hemo and delay the transplant.  I just couldn't imagine telling Adam that news, and I stressed about it it all night and most of the next day.  My mind goes into all of those dark nooks and crannies....I ALWAYS imagine the worst just to prepare myself emotionally.  

I had dialysis labs on Thursday morning, and I was surprised to find ANOTHER new nurse at the clinic.  Luckily, she's nice and not as "tightly wound" as the last one.  My dialysis nephrologist was there, and I told her how awful  my numbers were from Mayo, and she changed up my program again, adding a 1500mL manual exchange in the early evening.  What that means is that I drain out whatever fluid I've got remaining in my abdominal cavity from the previous evening's run, then I fill up with 1500mL of fluid at around 6:00pm.  When I connect for my nightly run, that 1500mL will be around 1800-2000mL because of the fluid that's pulled off, and the machine will drain it and start my nightly run.  It isn't a significant change as far as the amount of dialysis goes, and it probably won't make a whole lot of difference, as bad as I'm dialyzing but I'll do it.  It is an incredibly awful feeling though, and limits most activities now.  Once I put the fluid in, I just want to go to sleep so I can't feel it.  It's suffocating.  I can feel my lower ribs because of all of the fluid pressure.  It's just indescribably awful, and I hate every second of it.  Having to do manual exchanges changes my love of PD.

Later that same day, I was able to talk to my transplant coordinator and she said that my doctor approved to proceed!!!  We are official!!!!

WOOOOOHOOOOOO!!!  Nov 3 !!!!!

I booked my hotel, one for my parents when they come up, and we also got a plane ticket for my friend from Sweden who's coming to stay with us while I recover, so I think that takes care of most of the things I was worried about getting done.  Whew!  It just seems like there is ALWAYS something to "take care of" before Nov 3!

Unfortunately, that's where the good news ends in this blog post.  I was doing an adequacy test on Monday (supposed to do it on Sunday but I forgot to capture all of my urine), and I woke up to a phone call from my dialysis doctor early Tuesday morning (no biggie because I had an appt at 9 to turn in my adequacy stuff) which was surprising.  She had gotten back my labs from Thursday, and they match what Mayo saw in that my creatinine was unacceptably high.  She then said the words I've been need to switch to hemo.

I wasn't prepared for it.  I thought I was out of the woods on the whole hemo thing.  I think I've conveyed previously how much I hate hemo, and actually knowing that I have to do it again is really wearing on me, but I am dialysis very poorly now.  It's as if I'm not even doing dialysis.  And we have no idea why, although it's likely due to how much protein I still lose, even though  my kidneys are just barely functioning.  They're functioning enough to continue to do damage to every cell of my body, and my doctor is very worried that my transplant won't be a success if we don't do something to make my body more hospitable to Adam's kidney.  She's also worried about the risk of uremic pericarditis (heart issue).  Of course, hemo isn't without it's own inherent risks, but the benefits outweigh those at this time.

I could argue this decision....fight to stay on PD, but I just don't have any of that fight left in me.  It took all day yesterday to get things squared away as far as getting the catheter access placed (this Friday afternoon).  This means the end of lovely showers and back to that awful thing sticking out of my chest.  I'll be going Monday, Wednesday and Friday at 3:15pm, which absolutely sucks, but is clearly a better option for something like me rather than the 6:30am time slot they originally proposed.  Hell.  No.

This also means that this fucking disease has fucked up another school break for Izzy.  It's MEA weekend (that's fall break in Minnesota) and we had planned on going to a park and do some hiking, but I honestly don't think I can muster the energy right now.  The only nice day is going to be tomorrow, and I'll be in the hospital on Friday, so Izzy will have to go to daycare.  Fuck you, FSGS.

I'll also need to do hemo down at Mayo as I'll arrive there on October 29. They'll need to check the catheter access to make sure it's OK for surgery, otherwise I'll have to get the one I'm getting on Friday removed and have another access put in.  I'll do 4 days of plasmapheresis before the surgery which is why I need to be there on the 29th.  This also means I'll miss Izzy's school party, as well as neighborhood trick-or-treating.  

Fuck, I'm so tired.  Just so damn tired and beat down and wiped out.  Tired of being full, tired of connecting/disconnect from the machine, tired of not being able to taste anything, already missing yoga.  I feel like I need to be in a bubble right now as every little thing feels like too much to bear.

1 comment:

  1. Keep you chin up, this is only a curve in the road. You have a lot of people in your corner and they are cheering for you right now and always. November will be here before you know it. You and your family is in my prayers.


Woohoo - no more pneumonia (well almost....) but other terrible things, like a car accident...

Hello all!  I felt like it's been forever since I last posted, but it wasn't as bad as I thought once I checked.  I'm writing th...