Having a tunneled catheter is exactly as awful as it sounds

The first time I got my dialysis catheter was while I was inpatient in the hospital. The first one was a neck catheter, done in cases where it would be relatively short term and because I had been taking blood thinners.  Three days after the neck catheter went in, they put a tunneled chest catheter in, and then a day later my PD catheter went in.  That was a LOT for my body that week, but I was in great care and getting pumped with great drugs.  I was also so sick that anything was better than the way I was feeling before I went in the hospital.

THIS time, I've had a few more days to prepare for it, but it didn't help.  It's exactly as awful as I remember it being.  It hurts.  It burns.  It itches.

I started crying on the way to the hospital.  Then I got mad because they got me in over an hour late.   Then I started crying hysterically in the procedure room.  Then they gave me drugs and I focused on seeing if I could stay awake the whole time, but I must not have been able to do that because I don't remember anything after that.

This must've been taken while I was still out, or trying to come to.  I have some weird look on my face.  Killer photo.

And then I took this selfie because I wanted to see what it looked like this time.  I look like hell.  Hospital fluorescent lighting is as unforgiving as dressing room lighting.

I was so glad to get home, but it was a painful ride.  Joacim brought the recliner back into the loft, and my little table, and there I sat with my ice for the catheter, heating pad for my back and saltines for my tummy.

Izzy spent the day with my friend, Jess, and her kids and they did all sorts of fun stuff.  I'm very thankful that friends offer to help with Izzy when it comes to things like this, because it's no fun for her to sit in a hospital with me.  No mom is that cool.  Anyway, Izzy (and Joacim) were incredibly helpful last night, getting me whatever I needed.  We decided to watch a movie, and Izzy wanted to sit next to me, so she pulled up her rocking chair next to the recliner and we all watched Hotel Transylvania.

I got up to go to bed, and got awful chills, which I contribute to the anesthesia.  It was incredibly painful to my incision site....I started to get overwhelmed with pain and cold and then I just cried.  Izzy, unfortunately, was watching the whole time, and I could tell she was freaked out.  I mean, it was violent chills.  It's awful that she had to witness that, but once I got the heating pad back again and Joacim helped me hookup for my nightly dialysis (yes, still doing PD until Monday), we snuggled in bed until we fell asleep.

I slept terribly (no surprise).  I have no appetite as nausea is lingering.  I did eventually vomit this afternoon, and have spent the rest of the day lying in this damn recliner.  It's sunny outside, and I'm already tired of watching TV.  The hospital didn't send me home with any pain meds....they said to use Tylenol.  Laughable.  

Whine, whine, whine....I know, it's what I do now.

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 dreading....you 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.