Posts Tagged ‘water retention

07
Jul
17

2 Weeks

Well, I’ve had a functioning kidney for about two weeks now and I feel great!

I highly recommend, should you find yourself in organ failure, do try to get a new organ. I’m still recovering quite a bit from being sick for so long and from the trauma of surgery, but other than being tired and incision pain, I feel really good. I’m not retaining water anymore, so I’m about ten pounds underweight now that most of my fat and muscle is gone. I haven’t weighed this little since I was about 12 years old. By body is pretty weak. I look forward to getting back in shape, but I have to wait until I’m healed from surgery first. I’m getting very impatient.

I take 17 pills a day, not including what I take for pain. A bunch of stuff to suppress my immune system and prevent organ rejection, and then a bunch of stuff to prevent me from getting an infection since I have no immune system. I’ll stop taking most of the anti-infection stuff in about 3 months. I’ll be on the anti-rejection stuff my entire life, but hopefully lower doses after a year. I’m on steroids again, but much lower doses, so I’m not experiencing the adverse effects I was having last time — thank goodness. I have to get my blood drawn twice a week for labs. I have to record my weight everyday, my blood pressure and temperature twice a day. I’m being highly monitored. If my body starts showing any signs of rejecting my new kidney, the hope is we catch it early enough to reverse it. It’s a little stressful.

I’m taking part in a clinical study for a new anti-rejection medication strategy. Right now, the average life-span for a living donor kidney is only 15-20 years. I’m trying something that they hope will extend that life-span, or at least help them figure out a new strategy. All I have to do is take one more pill and get an extra vial of blood drawn with all my labs. Science!

My diet is unrestricted(!!!) except I need to watch my salt and eat “heart-healthy”, but that’s good advice for everyone. There’s a whole bunch of new stuff I’m not supposed to, mostly because I’m at such an increased risk of infection: avoid large crowds, don’t eat raw meat, don’t get vaccinated with live viruses, don’t clean up animal poop. Mostly avoid bacteria. I’m also not supposed to eat grapefruit because it’ll mess with my lab results. This is great news, I hate grapefruit. Don’t take NSAIDs, or anything else that will stress my single kidney too much. I’m not allowed to leave the country for a year, due mostly to a lack of access to my medications and regular labs. I’m not allowed to lift anything over 5 lbs until my incision is healed. I should avoid contact sports and any activity that could traumatize my kidney. My meds put me at a super increased risk for skin cancer, so I’m supposed to avoid the sun/cover up/wear sunscreen/wear hats/etc. Luckily, I don’t look too bad in hats and I’m a pasty sun baby, so sunscreen is already my jam.

I was only in the hospital for four days this time, which was much preferred to three weeks. My visit was pretty nice, despite a lot of reasons it shouldn’t have been. I had to get a central line put in again, and I was hooked up to IV fluids the entire time. I also had a catheter the entire time. So anytime I wanted to get up from my bed I had to drag an IV stand behind me and carry my catheter bag. It was a bit cumbersome. I mostly stayed in bed. For the first two days I was restricted to a clear liquid diet, so I was starving. I had trays of jell-o, flavored ice, chicken broth, and tea for every meal. I’ll spare you the details, but my extremely proactive attempts at avoiding constipation were very successful.

My low point came when I first woke up from anesthesia in the ICU during nurse shift-change. Should you find yourself in the hospital, do whatever you can to avoid needing anything during nurse shift-change, because shit flies off the damn rails. I woke up in the worst pain of my life with a nurse who wouldn’t even acknowledge me and then started saying, “you just had surgery” in response to all of my inquiries, as if that was new information. I was denied anything for pain, anything for anxiety, any water or ice chips, for several hours. I was really, really mad and I let everyone know it. Brittany said this was very comforting, since being angry takes a lot of energy and I seemed very “myself”. Things got much better when I moved out of the ICU the next day. I spent all day Saturday super high on morphine, which I didn’t really realize at the time. Interestingly, this was the day I had the most visitors, so everyone got to see me totally out of it, which I guess was fairly amusing.

By Sunday I was pretty much myself again, and Monday they let me go after a lot of discussions with different doctors. I have my two-week follow-up next Wednesday. Tania’s recovering very well from surgery as well, though also frustrated by how long it’s taking to get her energy back. Like me, she should watch her salt, but otherwise should be fine with her remaining kidney. ❤

Here are some mostly not graphic photos!

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14
Dec
16

Get me off this rollercoaster. 

Having a total blast at Chemo!

Double time fluids hollaaaaa!

No, that’s not true. Chemo’s a drag, and I had a bit of a rough start this morning. I’m really tired today — like regular I-was-up-late-and-I-had-to-get-up-really-early-and-I-wish-I-had-coffee tired. Then my nurse had a bit of a rough touch getting my IV in, then it bled everywhere, then it slid out a bit, then I almost fainted, because even after weeks of this I still have a pretty substantial anxious response to needles which is super obnoxious.

NOTE: This is draft ten of this post. I’ve been trying to get a post out since Saturday and just can’t wrap this up, and now it’s changed tone so many times from new developments over the last few days, I’ve decided to keep what I drafted earlier today when I was still getting Chemo and I will update below with the current state of things. I’m writing to you now from insomnia on Wednesday after Chemo. 

I’ve been on a fucking rollercoaster today and jesus am I ready to get off. I’m just gonna write this, hope it’s cathartic, go to sleep (hopefully), proofread tomorrow (maybe), and hit post. Things are gonna get a little more personal in this one, read at your own risk. :END NOTE

I really hope Chemo doesn’t wipe me out. Aside from tons of pain related to water-weight I’ve been feeling super good lately! We adjusted a bunch of my meds at the start of last week, and the last few days I’ve been feeling really good. I’ve been getting more sleep, I’ve been losing weight, and my energy has been great. My BP is hovering around 130/80 now. My hemoglobin is 10.4 today, which is “GREAT for [me]”. I have no idea what my kidney numbers are, but I got blood drawn on Friday, so I’m hoping Josh delivers me numbers while I’m in Chemo today and that they are reflective of how good I feel for once. Last time it seemed like I tolerated the Chemo fine, but they did so much other horrible shit to me the days following and I was freaking out after having not slept for days, so it’s hard to parse out what I reacted to. Also, I was feeling so shitty I probably wouldn’t have been able to detect much of a decline. I worry that now that I feel better I’m going to perceive more adverse effects. I’m also worried that I’m going to get neutral/bad kidney numbers again. It concerns me that it’s been over a month and I feel relatively fine but I’m still so close to kidney failure. Especially because I’ve been dragging my feet a bit on this living donor transplant thing, so right now I don’t have a back-up plan ready.

I just haven’t been able to wrap my head around the kidney transplant thing yet.

I’ve taken a very One Step at a Time approach to this whole development and I haven’t gotten to the Find a New Kidney step yet. I think I’ve sorted out the Figure Out My New Diet step, and I’ve nearly wrapped up the Establish a Routine at Work step. This week is Find Out How Much Chemo Actually Sucks step. Next should probably be Find a New Kidney.

The main things bothering me now continue to be the pain in my legs from the extra weight and swelling, and mood swings and insomnia from the steroids. It still seems to me like my high blood pressure was the thing causing me the most grief, and now that that’s handled, I feel pretty good. My anemia is managed and my low kidney function is getting managed, and hopefully improving. I’ve taken for granted how much standing I need to do. I worked from home three days last week to rest and reduce exposure to office germs. I had planned to do what I did the week before and go into the office Tuesday, Thursday, Friday, but on Wednesday I ended up having to run to Walgreens to pick up some meds, which resulted in a very long standing in line situation. I also needed to make myself a bunch of food, which resulted in a lot of standing in the kitchen. By the end of Wednesday my legs were still really sore, especially my ankles. I woke up on Thursday really tired with a bit of a headache and decided going to the office was a bad idea and stayed home. The extra couple hours laying in bed instead of commuting to work helped and I was able to have a really productive and more restful workday — probably even more productive than I would have been in the office because I was free of distractions, which set me up for success on Friday. But it was disappointing to admit I needed to stay home because I had exhausted myself trying to meet basic needs the day before.

Friday was awesome though. I woke up with tons of energy, went to work, got through some important meetings, hit an important milestone with the team, and was able to go to the office holiday party! I made it through the whole party because I found a place to sit all night and packed myself some snacks. My legs were kiiiiiiiiilling me by the end of the night, but whatevs, they hurt everyday. Totes worth it.

Brittany came over on Saturday and we made kidney-friendly pizza using red pepper sauce instead of tomatoes! It was so fucking good. I miss pizza. Pizza’s tough because the dough and the cheese have a ton of protein and all of it has tons of secret salt and tomatoes are high in potassium, so basically if I don’t make it carefully myself it’s too dangerous. We’re gonna try again, maybe make our own dough and it’ll be super more friendly!

Brittany objects to this photo.


– – – Here’s where today’s earlier (re)writings were interrupted because Chemo was over, Josh hadn’t shown up and I had to go find him. Let me finish recapping the several previous days’ highlights for you now before we dig into the mess that was the rest of today and how I’m doing now in this moment. It’s important to remember the good times. 

I spent a lot of Sunday working. I knew I’d be out on Wednesday, and I wasn’t sure if Chemo was going to wipe me out for the week, so I took a lot of time to prepare things as best I could for a worst-case scenario so the team and the project doesn’t suffer (much) if I’m out for a prolonged period again. This is great because I actually did a TON of work and now will be able to focus on other work things for the next couple weeks and be able to pitch in and not be underwater. It’s a win win for a hard day’s work! 

Oh, also! During Saturday Night Insomnia I Googled “shoes pregnant women swollen feet” so Sunday I got up early and went to the Sketchers Outlet and found these sweet men’s extra wide memory foam boats for my cantaloupe-size feet! On clearance! I tried on the recommended pregnant women shoes–all impossibly narrow. But these guys! They’ve helped so much already. My feet were starting to get really fucked up from chafing issues and popped blood vessels from being shoved in my vans boat shoes (the only shoes I could still even get on at all) so I needed a more comfortable solution. And these are great! And not completely hideous–at least they’re a nice neutral gray. 

Marcie’s fat head for scale.


Monday I decided to go to work, even though I knew Tuesday was already a planned long day. My energy has been super good and I was losing weight, so I went for it. It was great! Jess and I ended up taking Bart, which was not great–especially the harsh reminder that GOING UP STAIRS IS REALLY FUCKING HARD RIGHT NOW. That drained a lot of energy I didn’t have first thing in the morning. Then I stood on Bart with a mask on. Apparently the mask and a general look of agony isn’t enough for anyone to offer me their seat, and I have not yet developed any selection process for awkwardly asking someone for their seat–so, suffering instead. I survived, then I did it again later to get home. 

Tuesday was the last hurrah! A long day of work followed by an outing for Elora’s birthday! I planned and packed back-up meals in case dinner was a kidney disaster (it wasn’t, so I ate that PBJ for lunch today instead). I rode the bus to work, which was fine. Except I sat next to a cougher, so I immediately pounded Emergen-C when I got to the office. Don’t worry, she was a considerate careful cougher and I made a point of holding my breath and not touching anything on that bus and feel fine today. I also find out today that my white blood count is totally back to normal so I’m not completely without an immune system, just suppressed still from steroids. 

ANYWAY work was good. Stressful, but I found a few good Pockets of Zen throughout the day to maintain balance, which is what is important. Dinner was lovely–not filling, but I had packed follow-up snacks which I annhilated much to Aja’s amusement during the intermission. The Lion King was AMAAAAAAAZING and totally worth how painful it was to sit in that chair unable to stretch out my legs. So, so happy I felt up to it and was able to have a fun night out with the ladies. ❤ 

Happy Birthday Elora!

I’m glad we recapped all that, I already feel a little better. Let’s chat about how the rest of today went after Chemo. 

So, for context, besides just generally being due to check in with Josh and wanting to ask him some questions, I also DESPERATELY needed to see him today because HR has been UP MY ASS for extremely explicit documentation regarding my ability to work for all the annoying HR-type reasons you can possibly imagine and things were going to get very ugly for me if I didn’t procure signed documents TODAY. (And let me say that our HR people are super nice and competent and have been very understanding and accommodating and just doing their jobs and I’m the villain here because I’ve been terrible because for one I’m just really bad at shit like this for some reason and always have been and also Josh runs his office like it’s 1993 and doesn’t use email and it’s easily the WORST thing about him, so everything just feels a little impossible.) So, I was pretty stressed out. I was also getting really exhausted. I also found out some important facts from my Chemo nurse today which I was not happy about:

  1. One of the featured drugs in today’s Chemo Cocktail is more steroids! Oh AWESOME JUST WHAT I NEED. 
  2. One of the major side effects of the drugs in my Chemo Cocktail is “extreme constipation”. This was news to me, and explains a lot about about a certain stretch of time in my hospital stay lemme tell you. Why won’t people tell me the side effects before they give me things when I ask?!
  3. One of the major components of my Chemo Cocktail is several liters of fluid. Necessary to protect my vital organs from the literal poison they’re injecting into my veins, but as someone experiencing serious fluid-retention issues responsible for my some of the most substantial quality of life downgrades I have right now, this conerned me. Fluid-rention issues that I thought I finally had under control because I lost ten pounds last week! It really concerned me when I felt my face get fatter than it was this morning as I was sitting in Chemo. It deeply concerned me when they weighed me at Josh’s office and it was like I hadn’t lost any weight at all and the accuracy of my home scale was called into question. And now that I’ve confimed my home scale is just fine and I did in fact gain back 8lbs today from chemo fluid that will probably take me at least a week to lose again I just want this day to be over. Fucking sausage legs. 

I did get one piece of really good news from my Chemo nurse though, which is I don’t have to be quarantined post-Chemo, so I can go right back to work if I feel up to. Which is awesome because there’s tons of holiday festivities at work this Friday and I’d be really sad to miss them! She’s also really confident I’m going to tolerate the Chemo fine and gave me some meds to manage side effects if I have any. So I feel good about that! 

Ok–so there’s the stress context for my Josh Hunt. Also, remember I’m exhausted and perpetually hungry. Here’s where things start to get really bumpy–buckle up! 

We go upstairs two floors to Josh’s office and, surprise, he’s not there. His office staff are helpful, tech savvy, and also pretty cute. They are my people. I get the impression they don’t like pretending it’s 1993 in there either. I explain my paperwork situation to them–emphasis on needing it TODAY, OR ELSE. We figure out how to fax documents from my iPhone to their office because THE FUTURE IS NOW and The Dream of the 90s is Alive in Josh’s Office. And just as this initiative is taking flight we hear the tell-tale sounds of Josh singing in the hallway.

“Hello!”

“Hey!”

“You’re here!” 

“YOU’RE here! I need you!”

What I find out later is that Dad ran down to the pharmacy to pick up my meds and ran into Josh and told him I was waiting for him in his office with no appointment. And even though Josh was already running late to something he rushed upstairs because he is the fucking best. 

“How are you feeling?”

“I’M GREAT! I’m faxing you annoying paperwork, I’m really sorry, but HR is going to murder me if you don’t fill it out.”

We did our check-up, I told him how great I’ve been feeling all week, how I’m finally shedding the water weight, how low my BP has been, how Chemo went and how good my blood numbers are, and that I’m really curious if my kidney numbers are finally improving with everything else. 

Well, they’re not. We looked at my lab report from the blood I gave Friday morning before work and they’re TERRIBLE.

My creatinine is over 4 — tanking my GFR to 12. W T F. 

Remember this is Friday morning — the day I was stressed as fuck at work, then was out all night at our office holiday party and basically felt totally fine besides leg pain. W T F kidneys?! 12% kidney function? Are you kidding? It’s been over a month of steroids and Chemo and this fuckin diet and 12% is where I’m at? WHY am I doing this? 

So, I launch into some questions I’d wanted to ask Josh today anyway. 

Would we have to finish this 6-month treatment plan I’m on before I can receive a transplant? 

No. If things continue this way we jump ship on Chemo and do the transplant as soon as the match goes through. Try to find a living donor sooner than later. In the meantime, we continue the Chemo because that + steroids + the plasma aphaeresis I had is still my best shot at avoiding dialysis if finding a match takes a long time.

Ok. What do we think caused this dip? Is there something I should be trying to pay attention to? What are we missing? 

It could be the increases to the meds — the diuretic and/or the blood pressure meds. It could also be related to BP being lower (W T F — damned if I do…). Let’s get more blood tested today and see if I’m stable from Friday or even worse (or magically better!) and make a plan from there. 

Ugh, I just had a fucking IV in there and could have gotten that so easily. UGH NEEDLES IN BOTH ELBOW PITS WHYYYYY. (It ended up fine. I ended up with the old Asian man again and he’s my favorite because he just goes for it on my tiny veins with the needles for small children and I don’t even hardly feel it. I love him. He had to take my blood twice in one day right before Halloween and made off-color vampire jokes. He’s great.) 

I made Josh really late to whatever thing he was already late for (meeting, not with another patient, so not much guilt on my part, haha, I mean he did forget to visit me, which he apologized for) but he filled out all my vitally important paperwork in exceptionally legible handwriting (which I complimented him on–“your lucky day!” he replied). He got a little cheeky. There was a lot of YES/NO boxes on these forms with regards to unpredictable questions, especially in light of my garbage numbers, so for the last one he created a MAYBE box to check instead then wrote “We hope not!” off to the side. Which is hilarious and really illustrates who I’m dealing with here. But I hope doesn’t get me in trouble with HR who gave me explicit direction to not be ambiguous in the responses, haha. Oh well. SORRY HR I JUST DON’T KNOW RIGHT NOW IF I’M GOING TO NEED MAJOR SURGERY AND WE’RE ALL JUST GONNA HAVE TO DEAL WITH THAT UNCERTAINTY TOGETHER OK?!

So then I got blood drawn and got to attempt to leave SF at precisely 3:30PM which is basically the worst time imaginable to try to leave the city, as it gets you deep into Oakland traffic at precisely 5PM which is also THE WORST. So we were in the car forever with my father who is no longer accustomed to rush hour traffic, let alone the Bay Area’s unique brand of total fucking idiot rain drivers. So yeah the drive home was a super relaxing cap to a shit time during which I tried not to start too heavily processing how much I hate my kidneys so I wouldn’t start crying and instead focused on things I can control–like work! 

And now I’ve basically done a merry-go-round of that all night. Where I know, in my head, I HAVE to start taking meaningful steps towards finding a kidney, but I know that the first step is dealing with the overwhelming panic I start to feel every time I try to start thinking about it in any real way and I really don’t want to but now I’m crying so I’m halfway there, this totally worked, I’m gonna go cry over my stupid fucking kidneys and hopefully fall asleep. It’s 1AM now I’ve been writing this for four straight hours my eyes probably won’t work very well tomorrow but I’ll be all cried out. 

Morning Update: I feel better but also like shit. Between crying and water weight my face is massive and puffy again and I’m torn between wanting to wallow in self-pity in bed and wanting to get the fuck up and go to work where I’ll at least feel good about myself. I think work is going to win–if I get too tired, or start feeling bad, I’ll leave early and come home to wallow. 

Marcie is the best. She’s not accustomed my hysterical sobbing and decided the best thing she could do last night is come over and rest her head on my chest. She’s still on top of me now. 

Ok, time to get up. 




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