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.

Adequacy Results

The results from my adequacy test this week were good.

albumin - 2.3G/DL (up from 2.1)

potassium - 5.3 MEG/L (up from 4.7, but still within range)

phosphorus - 5.7 mg/DL (down from 6.6, but out of range)

adequacy - 2.58 KT/V (up from 2.52)

hemoglobin - 9.3G/DL (up from 9.1)

Overall, I'm seeing improvement, but I think I expected bigger changes, especially with my adequacy.  The minimum number to be considered receiving adequate dialysis is 1.7, so I'm well ahead of that, but I had expected that such a drastic change to my program would result in a drastic improvement.  Of course, I had only been doing the program for 3 days prior to the test, so hopefully I'll see continued improvement the next time I do it, IF there is a next time.  I do these every 3 months usually, but my transplant is tentatively scheduled for November 3rd, so I may never have to do another one!!  I'm really glad about the phosphorus one, because that's the hardest one to lower (at least it is for me), so the combo of program change and increasing the binders seems to be working.  The potassium is creeping up, and that's the one that can be most dangerous due to the affects it has on my heart, so I'll keep checking on that one.

All in all, things are still going well.  I've been on short term disability for 3 weeks now, but I'm a little frustrated in myself at how little I feel I've gotten done.  I'm pretty sure this is just me being too hard on myself, but I always struggle with keeping up with my own expectations.  I DID visit a lawyer this past week and got the process started on my will, power of attorney and health directive, so that's a great thing to have checked off.

Izzy's back in school, and since I've been home she's been riding the bus to and from school.  It's kind of book-ended the days a little, meaning that I don't feel like I can do a lot of spontaneous things in the afternoon because I heed to be home before the bus gets here.  I'll work on getting her back into going to after-school care this coming week, but it's been kinda nice to have this as well.  She's been able to play with a lot of kids in the neighborhood and is doing great at making friends.

I'm REALLY struggling with exhaustion this week, and I still can't put my finger on what's causing it.  I'm going to start giving myself EPO injections at home next week, so I hope this will help things out.  My legs feel like they're full of lead, and my blood pressure is higher than I'm comfortable with.  Again, going back to the expectation thing....I think I thought that, if I wasn't working, that I'd have energy to do other things at home, but that's turning out to be completely untrue.  Turns out, I'm still sick, and I'm still tired, and I'm still incredibly frustrated by it.  Today was the first day that I slept in in 3 weeks, and I slept until 1:30pm.  Yes, I slept the whole time, and yes, I could've slept more.  I figured that I'd do absolutely NOTHING today in the hopes that I'd have some energy for this weekend, since it's my birthday and all.  Fingers crossed that my plan works!

I have no catchy title...just a lotta whine

More whine today....

I'm not feeling better, and I'm losing patience.  I'm sluggish both physically and mentally....what I wouldn't do for a burst of energy.

I know that yoga makes me feel better....it always has.  Back in January and February, I was going pretty regularly, and I felt so strong and vibrant.  And then pink eye and sinus infection.....nothing's been the same since.  I've tried to go to yoga after work, but I think I described what that's like in my last post :)  I went the other morning, and it felt amazing.  It just made me realize how much of a physical difference there is between the me at 9:45am and the me at 6:45pm.

I've been doing a few manual exchanges during the day to try to help take the weight off, but I can't tell if it's helping or not.  I'm not sure if I should fill with more fluid for a shorter amount of time, or less fluid for a longer amount of time.  It feels like a guessing game, and I'm guessing wrong at every turn.  The weight just keeps creeping on, and I feel powerless right at this moment to stop it.  Usually I can "course correct" quicker, but all o my little tricks aren't working right now.

And my labs.....damn damn labs.  My phosphorus is getting better (lower) but I've been relying on those binders and I didn't ever want to do that.  I saw today that my potassium was high right now, and that worries me more.  It's at 5.9 right now, and high potassium is a risk factor for heart issues, so I feel like a freaking ticking bomb.

I need time. Time to get into a morning yoga schedule.  Time to plan more appropriate meals.  Time to prepare them.  All of these problems are fixable in theory, but the amount of energy it takes to do any of it isn't something I can fix, and it's my limiting factor right now.  Eating healthy takes work, and I don't want to spend my beautiful,  sunny Sunday meal prepping.  We don't get enough of this beautiful weather, and I want to soak in as much as I can.  Besides, I'm so exhausted and sleepy all the time that even if it were a crappy day, I'd still be too tired to do much.

I may have a smile on my face, but in  my head I'm thinking, "fake it till you make it".

Also, no answer from Mayo yet.  My coordinator is on vacation, but I was able to talk to another nurse who's covering for her.  They do have all of my labs, but it probably won't be until Tuesday that I hear anything back.  Good news is that my labs today showed that my albumin was at 2.0, and I don't think it's been there in 4-5 years.  Hopefully it's enough!

So.....when's the big day?

"When's the date?"  This is a question I get asked daily.  Totally makes sense since I got THE BEST NEWS EVER a week ago, but unfortunately, I don't have an answer to THIS question....yet.

The last time I was at Mayo was back in October to get evaluated for transplant.  This was BEFORE I  started dialysis and I was pretty sick at that time.  Since then, all of my care has been through Davita, so Mayo has no idea if I'm better or worse because they haven't seen any labs.  I've been in contact with my donor nurse coordinator (Tammy), and she's now in contact with my amazing PD nurse, Amy.  Together, these two ladies will do whatever they can to keep this process going.

I had my regularly scheduled nephrologist appointment on Monday, which was great because Tammy was able to talk with Amy before and get lab orders created.  I did a random urine collection at my appointment, and they did a blood draw as well.  These will be processed at Davita, and the results sent to Mayo.  Amy also sent my last 4 months of labs to Mayo as well.  The only thing we didn't already have was microalbuminuria, which is what the blood draw and urine collection will be used to measure.

Once Tammy has everything she needs, she'll work with the nephrologists on the transplant team to determine a course of action.  The biggest concern right now for me is my albumin.  It's at 1.9 right now, which is better than October when it was 1.6.  Unfortunately, normal people have an albumin that's 4.0 or higher, and I'm pretty far away from that.

I've been working on bringing my albumin up for years, but it doesn't budge much because no matter how much protein I eat, I pee most of it out.  Oddly enough, right now, my biggest hurdle to getting a new kidney is trying to get my existing ones to stop completely.  Often times, people on dialysis stop urinating completely, but I'm still going, which means my kidneys are too.  And while my kidneys are still working, they're still spilling protein.  The question is how much protein.

The reason all of this is important is primarily because of the FSGS Protcol that I need to follow.  Because my disease has a higher chance of recurrence after transplant (meaning it can come back in the new kidney and we start this whole rodeo all over again), I have a medical protocol to follow to help ensure I'm in the best condition possible to prevent recurrence.  That protcol entails taking one dose of a drug called Rituximab (or Rituxan), waiting 2 weeks, taking another dose (this is by IV, btw), and then waiting 2-3 months to see if there's been any reduction in B-cells.  If there has, then I do plasmapheresis (basically dialysis) to clean out the cells from my blood.  

But I can't do ANY of this until my albumin goes up.  Based off of my October labs, this makes sense, because I could go through the process of getting the Rituximab, but I'd just pee it all out.  So, here's what the future looks like:

1. get labs done at Davita
2. wait
3. hope
4. work with Mayo to determine course of action to get me healthy enough for FSGS Protocol
5. get healthy enough
6. Rituximab
7. wait
8. Rituximab
9. wait for what seems like an eternity
10. hope like hell that it worked
11. plasmapheresis
12. GET ADAM'S KIDNEY!!!!

So, what are some of the options that could be presented to me once Mayo gets all of my labs? Honestly, I'm not sure, but I've got a couple of possible scenarios (this is all me guessing by my own research, btw):

1. albumin infusions - seems least effective because if I'm still losing a lot of protein through my urine, then I'll just pee out the albumin too
2. possibly change to hemo as there is some extra protein loss daily from the PD fluid - this also seems unlikely based off conversations with my dialysis nephrologist, but not sure how unlikely
3. take a bunch of NSAIDs to knock 'em out
4. cut of blood supply to kidneys (via radiology) so they essentially starve and die. This was described to me as potentially painful, as it's like giving your kidney's a heart attack.  I haven't researched this too much yet though

Overall, it's a bit frustrating because I don't have answers, yet it's not NEARLY as frustrating as not having a donor.  Having Adam approved opened up the door to having these conversations now.  I'm frustrated because I'm not patient, and it feels like I've waited forever, but I can wait a few more months if I know it increases my chance of success.

And I still can't wipe this smile from my face.

The year may change but the routine doesn't

Honestly, I can handle this dialysis thing.  I mean I really feel like it's fitting in to my life after this break from work.  I was able to experiment with it a little and get more comfortable, so much so that I feel I can connect myself in my sleep!

I was cramping a few nights ago, and it was truly awful.  They're like charley-horse cramps, only WAY worse.  I had one in my right leg, and it started behind my knee on the right side.  It then radiated all up and down my leg and through my hip.  The only thing that really provided any relief was getting out of bed (mind you, it's around 1:30am) and standing on my right leg only.  That kind of forces the muscle to do what I need it to do (and it's something that my dialysis nurse taught me when I first started dialysis in the hospital and had a CRAZY cramp the very first time).  I'm not sure why I was cramping, as I don't feel like I was taking off too much fluid, and my blood pressure readings agree.  Hopefully this isn't something that'll happen frequently.

I had labs done on Monday and my dietician called back with the results.  It seems like my calcium and potassium are looking good, my PTH abnormally low but that's better than being high, and my albumin is still low at 1.7.  My hemoglobin and iron stores are good, so I can back off of the EPO injections and iron infusions now, which means 2-3 less pokes every month.  Unfortunately, my phosphorus has risen a lot since my last draw...I'm still under 5, but not by much.  I could start taking my binders (not on them yet), but I really want to see if I can control it better with diet as this dialysis thing isn't going away any time soon.  I talked with the dietitian to try to figure out what changes I need to make, and they all suck because it means I can't have what I want.  I've been eating a lot of dairy lately as I've re-discovered the taste for it (milk especially) and its a great source of protein, but it's also really high in phosphorus.  So are beans, which are my go-to protein because they're easy and yummy.  I'm supposed to keep phosphorus consumption under 1000mg/day, and I'm struggling a little with how to do that.  Cheese/dairy is a quick, easy protein that's portable, and beans are quick and easy too.  I need A LOT of protein every day, so high-protein foods are great, but I have to be careful because they can also be high in phosphorus.  The worst part of it is that most nutritional labels don't list phosphorus content on them, and that makes it hard to make easy, quick decisions about what I can/should be eating.  I hate how much time and effort this particular thing is taking.

I've also noticed my weight creeping up, and I'm terrified.  I had no idea, but I could be getting an additional 400-500 calories through the dialysis solution!!!  That's a lot of calories every day to offset.  My appetite is pretty healthy again, and with the time off the last 2 weeks, I've had some time to snack (apparently too much).  I started working out again, so I'm hoping that building muscle mass can help offset the weight (or at least make me feel like that's the reason I'm gaining weight, rather than just eating too much :).  I feel like my life is swirling around my weight and food right now, and it's not a fun place to be.

Ummmmmm.......the downward slide?

I haven't been feeling well these last few weeks.  "Not feeling well" can mean a million different things, but in this case it's a "ohmygodi'msofreakingtirediliterallycan'tgetoutofbed tired".  Honestly, the levels of tired I can be never fails to amaze me.  I have been doing yoga fairly regularly, drinking green smoothies (not because it's cool but because they're yummy!).  I wouldn't say I've been eating as well as I normally be do, but I haven't bellied-up to a deep fryer or anything.  But no matter what I do, it doesn't help.  Nothing does.

So, labs.  I had the done last Thursday.  My thyroid was COMPLETELY wonky again, but that might be explained because I switched blood thinners.  The new one will not require the weekly blood draws, and I can eat green things again (double bonus!!!) without fear.  My iron was low but not awful, but my creatinine jumped.  I think it was 2.1 back in Marck, and it was 2.9 on Friday.  That gave me an est. GFR of 18.  Wow, kinda freaked out then.  I had the labs faxed to Dr. F @ Mayo, but he was on vacation Friday, and he didn't call me back until this evening at 5.  My primary care wanted me to make sure I was hydrated and repeat the labs, which I did today.  Now my creatinine is at 3.1, GFR @ 17.  So, worse.

Okay, I've got a LOT of thoughts on this, so I'm just gonna verbal diarrhea them right out of my head so I can sleep tonight, k?

1.  My thoughts are that labs should reflect your actual state, meaning I don't believe that I should put extra effort into being any more hydrated than I normally am in order for my lab numbers to improve.  Today's numbers show what's real.  I usually drink 3-4 liters of water a day....how much more is expected?

2.  My primary care wrote me a note telling me she'd recommend I hold off on taking torsemide (diuretic) until I talked to my nephrologist.  I think this is when I really started freaking out.  Seriously, these diuretics are literally the only way I could live a fairly "normal" life.  2 days without them and I can't wear most of my shoes or pants.

3.  So, do I stop taking the diuretics to see if it helps, knowing I'm going to suffer horribly?  And what if it does help?  What then?  Will I be expected to not take them at all?  In my brain, I think that sounds like drowning in my own retained fluid.

4.  I hate getting lab results late so I don't have a chance to review with my doctor and can spend the next 12 hours ruminating over everything awful.

5.  Am I now "sick enough" to be listed active on the transplant list?

6.  I'm scared because those numbers jumped quickly.  Nothing in this damn disease has been linear.

7.  Am I totally freaking our for no reason?  What if Dr. F calls me tomorrow and says something to the effect of "well, we knew it was headed in this direction" kinda thing and is all blasé about it?  I swear, the reaction a patient has is sometimes so dependent on the reaction from a doctor.

8.  If I were to go to an ER right now and they do labs, they'd probably hook me up to a dialysis machine out of sheer panic.

9.  I don't need to go to the ER....I feel technically fine, just tired and sleepy.  All.  The.  Time.

10.  How in the hell do I go about preparing my employer?

11.  What the hell is next????  I'm a planner people!  Knowledge is power.  And I have neither plans nor knowledge at this time.

Okay, verbal outburst complete.  I DO feel better ;)