Posts Tagged ‘hospital stay

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!

This slideshow requires JavaScript.

22
Nov
16

Home but not better.

I AM HOME FROM THE HOSPITAL!

img_0892

Back home with my Top Nurse and not wearing hospital clothes!

It’s a little misleading. In a lot of ways, I’m in worse shape now than I was when I got to the hospital — my immune system is shot and I’m even more anemic. There’s an open wound in my neck. I’m still retaining a lot of water and feel and look like a sausage.

I’m currently adjusting to the reality that I am living with stage four kidney disease, and will be for the foreseeable future until things either get better or worse.

I have to limit my potassium.

I have to limit my protein.

I have to limit my sodium.

I have to monitor my anemia and continue taking iron supplements and hormone injections.

I have to monitor my high blood pressure and continue taking medication.

I have to be slowly weened off of steroids for the next six months.

I have to take a bunch of medications to counter the negative effects of steroids.

I’m probably going to have to get more chemo, which will make me more anemic again and decimate my immune system, again. Plus risk of infertility, plus risk of hair loss.

I have to take extra care to not contract any infections that could set off my immune system and throw my kidneys into crisis.

I have to keep in tip top health so that I am a good donor recipient.

I have been encouraged to find a living donor match so that I have a plan in place should I find myself desperately needing a new kidney so I can hopefully avoid dialysis.

There’s a still a chance I will be able repair my kidneys and regain more kidney function. This will take a very long time.

I am making plans.

Yesterday was a really weird day. I started the morning with my favorite nurse telling me she had completed my discharge paperwork should the doctors decide to let me out. I resisted hope. My numbers were stable — hemoglobin up to 6! Kidney numbers still the same. My last scheduled plasma treatment started relatively on time and went fine, except that the steroids made my entire body hum for two hours which was super unpleasant. Josh and my internist delivered the news that we wouldn’t be doing anymore plasma treatments and I was allowed to go home if I wanted to. They didn’t actually say, “Well, there’s nothing else we can do for you,” but that’s what I heard. Well, let’s get me the fuck out of here then.

We spoke at length in fairly vague terms about what my next six months – forever look like. I got randomized a new attending that had to meet me for the first time then coordinate all my discharge stuff–this took ALL. FUCKING. DAY. A representative from the living donor transplant program paid me a visit and gave me a pamphlet. A dietician brought me three lists of foods I can’t eat. Then I spent several hours waiting for someone qualified to remove the central line from my neck so I could go home. This was agony — not the removal, just the wait. Phil, my nurse (poor Phil, who only gets me on my worst days–Iron Treatment #1 and then yesterday), cold called the entire hospital all afternoon I think until they finally sent someone up around 6:30. It took less than 5 minutes to pull this thing out of neck and then Phil had to hold a compress on it for a full half hour so I wouldn’t bleed out (success!). Phil also ran down to Walgreens and picked up all my meds for me. Then I had to get a flu vaccine and a pneumonia vaccine (these both still strike me as something very risky to do). THEN. THEN I had to wait for the goddamn pharmacy to send up my hormone injection. The universe decided it was a great time for my period to start. We didn’t leave the hospital until 8:30.

Mom and Jess spent the better part of their day hanging out in my hospital room waiting with me while I basically sat catatonic on my bed trying to process everything that is happening to me. I was not fun to be around. I’m still not very fun to be around yet.

But! I’m working on it. I have a lot to figure out and I love figuring things out. I was up all night trying to figure three things out:

  1. How do I get my kidneys to work again?
    1. I’m going to build some tools to hack my diet and monitor all the things. Everything available in the app store is garbage I think, so I’m going to build my own system in Google Sheets.
    2. I’m going to consult some more “alternative” medicine. I fully submitted myself to western medical establishment for two months and have found it wanting.
    3. I’m otherwise perfectly healthy, so I’m going to keep doing what I’ve been doing for the most part, with a few lifestyle adjustments.
  2. How do I get back to work?
    1. This has less to do with work and more to do with me getting back to something that I love.
    2. Actual work is the easy part. I’m very good at my job and my work is not strenuous. Work needs my brain and my brain is still great.
    3. My immune system is a problem. My office and the means of getting there are both kidney death traps. I’m cultivating a “Bubble D” persona. I will resist my polite impulses to hold doors open for people — the more door knobs I can avoid, the better.
    4. I have to stay hydrated.
    5. I have to not schedule three stressful hour long meetings back to back. I will carve out mandatory rest time in quiet corners of the office for myself throughout the day.
    6. I will figure out my long-term treatment schedule and all of the logistics around that as soon as I can.
  3. How do we stop the nazis?
    1. I can’t believe this is a very real concern.
    2. I don’t even know where to start with this right now, but there’s no time to lose.

Tomorrow I have a follow-up appointment with my oncologist and I have to schedule a follow-up with Josh for next week. Tomorrow I get to take a shower and change the bandage on my central line wound. Tania and the boys are coming for Thanksgiving tomorrow. I’m working to be out of my processing funk by then. I’ve spent most of today catching up on work and it’s been wonderful.

20
Nov
16

Ain’t no party like a hospital party!

I’ve had a good weekend! I had hella in-and-out-of-town visitors all weekend long; the peak of which was when Alex, Brittany, Aja, Elora, Bubs, and Rudy were all here Saturday night chillin like hanging out in a hospital room is a totally normal thing to do. It was awesome! Only thing missing was some beerz and my ability to stay awake past 11PM.

I have the best friends. ❤ ❤ ❤

 

img_0869

Marla and Geoff also drove up from LA this weekend to visit with me both days and Amanda came by for a few hours today. Alex slept over last night giving Mom and Jess a much needed break I’m sure.

My kidney numbers still aren’t great, but I’m making blood again and everyone’s less worried about me needing a transfusion. The nurses were understaffed all weekend, but I’m low-maintenance and had a lot of supervision all weekend anyway. My BP has been a little elevated the last few days, but I don’t know if that’s because of my kidneys, or when they take it, or me needing more adjustments to my meds. I’m still pretty puffy in weird places from steroids, which is bothersome.

My A-Team of doctors is back tomorrow, so I guess they’ll all talk and decide what my plan is. As of now, I have my last scheduled plasma aphaeresis tomorrow and then…? Obviously, I  would like to not live in the hospital anymore, but I’m still pretty close to kidney failure, extremely anemic, and my hemoglobin is still exceptionally low, so I’m just not sure sending me home right now is responsible. We’ll find out!

19
Nov
16

I bit of a mixed bag this morning.

My creatinine is up, again, and my GFR is down again (to 16, eeks).

BUT! My hemoglobin and other good blood stuff is on the rise, so I’m def starting to make my own blood again and recover from that chemo treatment. (Only possible downside to this is that my bones might start aching, so I’m on the lookout for that, but so far, so good.)

I got a full night’s sleep last night (10PM – 5:30AM!) and I’m feeling pretty good. I have a plasma treatment this morning which should be pretty routine at this point and then I have a lot of visitors on deck this afternoon — including a few special guests from LA I’m very excited to see!

I’m still a little puffy all over, but nothing like I was a couple days ago–the diuretic is making a big difference. Or, I’ve gotten used to it. Either way, I feel better.

Fuck my kidneys, man. If my birth-kidneys don’t want to be Team D anymore I’ll find some that will! My heart’s good, my lungs are good, this body is rockin — any kidneys will be lucky to find a home in here. Maybe mine will still turn it around after more rest.

All my usual doctors are off this weekend, so I got a visit from a new attending today — my first lady doctor! She’s nice, I’ll see her again tomorrow. My nurse today is Evan, who my favorite nurse Ann has been training. He’s very nice, but I have to help him a lot, haha. Luckily, my routine is pretty set at this point, so it’s not filling me with anxiety like it would have a week ago. Plus Ann’s around — already printed out my labs and divided up my meds real nice.

Harry Potter Marathon continues and Mom’s still hanging out with me. It’s raining in SF this weekend, but I’ve been flooded with reading materials the last couple days so I’ll probably have some quiet cozy reading time this weekend.

Should be a good day. I just wish they’d let me have more food.

Still not sure when I’ll get out of here. My 7th plasma treatment is scheduled for Monday, but they’re still saying 7-10 treatments.

Wasiem came by after work last night and brought me cards from the office. I work with the nicest people and I can’t wait to get back to work.

img_0867

Presumably me on steroids — thanks @kidtofer! ❤

18
Nov
16

I’M CLEAN!!!

Good fortune rains upon me today!

Yesterday was really hard, but it wasn’t all bad. Besides feeling shrink wrapped by own skin, I felt ok. My plasma treatment went smoothly, I took a nap, and I didn’t have to get a blood transfusion. I started taking an iron supplement and haven’t suffered any fallout from that yet, and they’ve put me on a diuretic to help with this excess fluid making me all puffy.

Aja and Viv came by after work last night and gave me lots of hugs, which I needed. They also brought crafting supplies from the office so we could add our hand-turkeys to the Jam City Farm. It was difficult with my shaky hands, but therapeutic, I think. It also wore me out, so I slept pretty good last night — 11PM-4AM.

image1

gobble gobble googly eyes

I woke up feeling good again this morning, but tempered expectations after that news from yesterday. No need!

Numbers are back on track today!

Creatinine is back down to 3.3 and hemoglobin is finally trending upwards, so my body is starting to make blood again. Progress is still very slow, but at least it’s in the right direction again. And that’s not even the best news!

First thing this morning, I received two packages!

I’ve been receiving care packages from friends and family since everyone found out, not to mention a fairly steady stream of fresh flowers. (Everyone in the hospital loves you guys for making my room smell so good all the time!)

I won the nurse lottery today!

Bea, who is usually one of the charge nurses (= IN CHARGE), was assigned to be my primary afternoon nurse today. She’s an older Russian woman and she knows what’s up. According to the staff wall, she’s the most experienced on the floor. I’ve seen Bea a lot since I moved up to the sixth floor last week and she’s always been super helpful, but she really took care of me today.

First of all, she’s got my drug schedule down — she knows I like to take my antacid first thing before breakfast gets here, then she gives me whatever I need to take in the morning after breakfast, then gives the rest of my dailies with lunch so I don’t have to take all 20 pills at once. Super nice.

After days and days of everyone saying I wasn’t going to be able to take a shower with my central line in, Bea today is like let’s wrap that thing up and get you a shower! O M G! Jess immediately brought over some real shower stuff for me because she is The Best Sister Ever and after I finished breakfast, Bea wrapped up my neck, found me a chair for my shower and

I had the greatest shower of all time!

It was actually a weird shower. I had a hard time negotiating the tiny shower with that chair in there and banged myself up pretty good (thanks for the bruises, anemia), plus I was pretty worried about getting water under my bandages, and I couldn’t use water that was too hot (thanks, anemia). BUT I’M CLEAN NOW. I’VE EXFOLIATED. I FEEL AMAZING. I took my time and washed everything like five times. It was glorious. While I was in there they refreshed my bed linens too, so everything is clean.

image5

I’m clean!

Afterwards, Bea completely redid the dressing on my neck and it feels a lot better. My neck is still pretty much covered in old adhesive, so I’m looking forward to washing that eventually, haha.

One of the only channels I get in here is having a Harry Potter marathon all weekend. Mom’s never seen them, so we’re having fun with that today.

After lunch today, Mom and I went outside for some fresh air. It’s super nice out today, not freezing like last time, so we did a few laps around the terrance in the sun. Definitely the most I’ve moved around since I got here, it’s been an active day. I’m pretty tired now, so I might take a nap before I start having visitors. Brittany’s coming by later, and I’ve gotten some other offers for visitors as well. I have a bunch of people coming by tomorrow — including Alex who is flying up from LA and staying until Sunday!

image8

I’m back on top! Makin some of my own blood again and still functioning pretty good with bum kidneys!

17
Nov
16

not the best

It’s been a bit of a tough one for me today you guys.

All my Important Numbers are trending in the wrong directions again today.

Not significantly, there’s no cause for alarm or anything, but it’s certainly not good news.

To add insult to injury, the steroids are causing my body to retain a lot of water. I woke up with my face really swollen and puffy. I look like I weigh 60lbs more than I do. All of my skin feels too tight. It’s uncomfortable, but I’m also being a little sensitive about it maybe. I mean, I’m on Day 11 of not showering (I can’t with my central line catheter in), there’s only so clean I can get with washcloths and soap and hospital wipes — so, I feel pretty disgusting. Not to mention I’m already feeling exceptionally betrayed by my body, so this is just a little rude.

I’m relieved that I’m still feeling pretty good despite how sick my numbers say I am. But it’s hard to be going through all of these treatments and not see them working very well. That news was a little unexpected this morning and I’ve had a hard time getting over the funk of it today, making everything else a little harder to deal with. I think it felt especially harsh because I woke up feeling SO GOOD this morning! I got a full night of sleep last night! I fell asleep after my vitals check around 11PM and didn’t really wake up again until we blood draw at 5:30AM! Then I fell asleep again! I really SLEPT last night. My energy was great when I woke up, despite my fat face. I was on track for another great day–then got the news about my labs and it just sucked the wind right out of my sails.

Yesterday was a really good day. I was in great mood all day and didn’t have any weird shit happen to me. Kendra came to visit, then Molly and Gretchen came to visit, they wore we me out and I slept. Jess stayed with me last night and pruned my flowers again. Things really felt like they were going to turn around. This backslide is hard.

Josh wasn’t singing when he came in today. We kind of glossed over the significance of my numbers going backwards. My attending and my oncologist have a difference of opinion on how much my failure to produce blood is the chemo’s fault vs my bum kidneys’ fault. But, they draw blood from me every morning, and then take more every other day, it’s no wonder it’s still going down. They’re going to start having me take oral iron supplements now and see if it helps — so far I’m not having any sensitivity to that, the way I did the IV iron–THANK GOD.

Tomorrow will be better.

At the very least, we’re finding out early that stuff just isn’t going to work and can make a new more radical plan before I waste too much time getting treatments that don’t help as I hurtle towards the inevitability of a kidney transplant. But let’s give stuff a little more time to work–maybe I am just chilling in the nadir and I have a nice boost coming.

Plasma treatment was uneventful today. I got another surprise nurse (where is Roche?!). She benadryl+steroids me again, so I took a nap after. The whole thing only took an hour and a half because my blood count is so low, hahaha. So, that’s nice I guess?

Looking forward to some visitors tonight — I’m in desperate need of hugs and distractions. Send cute animals!

View from my room is still the best.

img_0851

 

 

 

16
Nov
16

got some wins

Everything’s coming up D today you guys!

I’ve scored three major victories:

1 – I’ve negotiated snacks in between meals!

This low-potassium diet is no joke. EVERYTHING has potassium. I am on steroids and I am starving. The kitchen caught on that I’ve been hoarding anything I can to eat  between meals by asking for extra — usually saltine crackers and applesauce are the things I get away with. The dietician visited me again today, “Are you hungry between meals? Would you like me to organize snacks for you between meals? Cheese and crackers after lunch? A PB&J before bed?”

OMG YES I WILL EAT LITERALLY ANYTHING YOU WILL LET ME EAT I’M SO HANGRY

I’m simultaneously wasting away and bloated. My body doesn’t remember how to process white bread, apparently. I’ve eaten meat the last two days because I cannot subsist on bread, cheese, and green beans alone. I’m a hungry person. My family doesn’t call me “Snacky” for nothing. Please feed me.

If a PB&J actually happens, I might cry. I miss peanut butter. (Nuts are high in potassium but one of my favorite protein sources.)

2 – I’ve negotiated walks outside!

So long as I don’t leave the hospital premises, I am permitted on the terrace. I haven’t had sunshine or fresh air in 10 days, so I’m really looking forward to this. Plus, it’s a beautiful day in SF today!

3 – I don’t have to collect all of my business anymore.

By “business” I mean poop. No more specimen collections for the time being, unless I notice something weird. I get to flush myself again like a grown toilet-trained person!

In other good news, Josh was singing when he visited today. He’s still optimistic about my numbers now that they’re finally starting to trend how we want. We’re still all pretty confused as to how my numbers can be so bad and I can still be so high-functioning. I should pretty much be in kidney failure, but I’m still basically asymptomatic. I should be dizzy, I’m running on like less than half the blood of a normal person, but I’m walking just fine. My body is weird.




archives.

Categories