Posts Tagged ‘kidney disease

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.

16
Jun
17

7 Days

MY KIDNEY TRANSPLANT IS ONE WEEK FROM TODAY AHHHHHHHHHHH!

So crazy. Am I anxious? Yes. But mostly anxious-excited. I’m not really allowing myself to think about the stuff that’ll make me anxious-worried. It’s been a little challenging — usually, the way I cope with stressful situations and stay so level-headed is by processing potential outcomes in advance so that I’m prepared. Unfortunately, this situation is a little more high-stakes than usual and I’m trying to avoid freaking myself out. Also, I feel very strongly that I should not put any negativity around this into the universe right now, which is why I will not list my concerns out loud. Superstitious? Maybe, but I’ve seen it work the other way where I put a positive idea into the universe and it happens, so let’s not chance it.

ANYWAY I’m super looking forward to my terrifying major surgery next Friday, and so is my sister!

I’m also trying not to fall into a trap where I think about how after the surgery everything will be “back to normal”. This is not the case — I’ll still have chronic kidney disease, and I’ll still have the very mysterious autoimmune issue that caused the kidney disease. I’ll be on immunosuppression meds probably forever. I might have to stay on hypertension meds because of the immunosuppression meds. But! I probably won’t be puffs anymore, my back won’t constantly hurt, and I’ll be able to eat whatever I want without tasting unfiltered waste in my mouth anymore! I shouldn’t be extremely anemic much longer, which means I won’t get dizzy sitting down and be constantly on the verge of fainting. I’ll have enough energy to work five days a week and go out on the weekends, eventually. It’s exciting stuff. I get to LIVE!

I don’t really have a sense of how long my recovery is going to take. All the available information is for people over 65 and I am absolutely a spring chicken. By the numbers I should have been on dialysis weeks ago, so nothing typical here. I’m crossing my fingers for about two weeks, because that would work out best with my current work situation, but even I think that’s maybe delusional optimism. But I’m basically completely functional without kidneys, so… we’ll see.

I’ll let you guys know how it goes. 

10
Feb
17

Whoops

Of course right after I report things are stable and boring stuff starts careening off a cliff on me.

So a couple weeks ago, Josh decided to change up my BP meds. We didn’t really discuss why. Since we made that adjustment I haven’t been feeling super great — my legs have been extremely weak, like more so than I when I was in the hospital and barely using them. My knees and ankles have  been killing me even more than usual, even though I haven’t been putting any extra stress on them. I’ve been really, really tired. Physically tired. Like, exhausted walking a few blocks tired. It’s been rough. I’ve also been getting headaches again — not as bad at the migraines, but they kept me up for two nights this week.

I blamed the switch on the BP meds–check this ridiculous list of side effects. I’ve bolded everything I’ve been feeling, even though 90% is also just symptoms/side effects of kidney disease/anemia/steroids/stress.

More common:

  • blurred vision
  • cloudy urine
  • confusion
  • decrease in urine output or decrease in urine-concentrating ability
  • dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
  • sweating
  • unusual tiredness or weakness

Less Common:

  • abdominal or stomach pain
  • body aches or pain
  • chest pain
  • chills
  • common cold
  • cough
  • diarrhea
  • difficulty breathing
  • ear congestion
  • fever
  • headache
  • loss of voice
  • nasal congestion
  • nausea
  • runny nose
  • sneezing
  • sore throat
  • vomiting

Rare

  • Arm, back, or jaw pain
  • chest discomfort, tightness, or heaviness
  • fast or irregular heartbeat
  • general feeling of discomfort or illness
  • joint pain
  • loss of appetite
  • muscle aches and pains
  • shivering
  • trouble sleeping

Minor Side Effects
Less common:

  • lack or loss of strength
  • loss in sexual ability, desire, drive, or performance
  • rash

Rare

  • Acid or sour stomach
  • belching
  • burning, crawling, itching, numbness, prickling, “pins and needles”, or tingling feelings
  • feeling of constant movement of self or surroundings
  • heartburn
  • indigestion
  • muscle cramps
  • sensation of spinning
  • stomach discomfort or upset
  • swelling

I thought it a little ridiculous that while I’m in Josh’s office complaining of bronchitis and coughing all over the place, he prescribes me a drug whose side effects include fucking coughing. I could have been coughing forever! Also, this med is super not recommended for people with kidney problems (which is why we took me off of it in the first place, I thought, back in November!).

So, anyway, I’ve been feeling like shit the last week or so. But then I went for chemo this week and got my blood levels and I’m hella anemic again — hemoglobin down to 8. Nurses started using words like “blood transfusion” again. So that explains the bruising and the increased fatigue at least. I have ideas around why I’m suddenly more anemic and I think I can solve it with some favorable adjustments to my diet — we’ll experiment with that next week. They also went ahead and gave me that injection to boost my blood-making hormones again, so that should help me feel better sooner, too.

But then, the last two days my blood pressure has spiked up to like 150/110 and wasn’t coming down. I was lying awake in bed with a terrible headache unable to sleep for two nights and my blood pressure was through the roof for no reason. This morning it was climbing even higher so I made the executive decision to switch back to my other meds and called Josh’s office to leave a message.

Today’s the worst I’ve felt at work since I’ve been full-time back from the hospital. I ended up leaving a couple hours early because I was having a hard time focusing and really just started getting a little panicked and paranoid about what could be causing this spike in my blood pressure, which I’m sure wasn’t helping.

I’ve been at home decompressing for a couple hours and it’s still elevated, but I just got off the phone with Josh and it sounds like we had a miscommunication regarding my dosage which may explain this trend and we’ve made a new adjustment based on how not interested I am in being on that one with so many ridiculous side effects. Hopefully we can get my BP back down to a comfortable 130/80 again with our new plan.

TGIF

PS Here’s the listed side effects for the two BP meds I’m staying on, ha:

Labetalol

  • blurred vision or other changes in vision
  • chills
  • cold sweats
  • confusion
  • difficult or labored breathing
  • dizziness, faintness, or lightheadedness
  • shortness of breath
  • swelling of face, fingers, feet, or lower legs
  • tightness in chest
  • wheezing

Symptoms of overdose:

  • chest pain or discomfort
  • lightheadedness, dizziness, or fainting
  • slow or irregular heartbeat
  • sweating
  • unusual tiredness or weakness

Minor Side Effects

  • nausea
  • acid or sour stomach
  • belching
  • change in taste or bad, unusual, or unpleasant (after) taste
  • feeling of constant movement of self or surroundings
  • headache
  • heartburn
  • indigestion
  • lack or loss of strength
  • loss in sexual ability, desire, drive, or performance
  • rash
  • sensation of spinning
  • stomach discomfort, upset, or pain
  • stuffy nose
  • burning, crawling, itching, numbness, prickling, “pins and needles”, or tingling feelings
  • diarrhea
  • increased sweating
  • vomiting

Sounds fun, right?

Amlodipine

  • swelling of the ankles or feet
  • difficult or labored breathing
  • dizziness
  • fast, irregular, pounding, or racing heartbeat or pulse
  • feeling of warmth
  • redness of the face, neck, arms, and occasionally, upper chest
  • shortness of breath
  • tightness in the chest
  • wheezing
  • black, tarry stools
  • bleeding gums
  • blistering, peeling, or loosening of the skin
  • blood in the urine or stools
  • blurred vision
  • burning, crawling, itching, numbness, prickling, “pins and needles”, or tingling feelings
  • chest pain or discomfort
  • chills
  • cold and clammy skin
  • cold sweats
  • confusion
  • dark yellow urine
  • cough
  • diarrhea
  • dilated neck veins
  • dizziness or lightheadedness when getting up from a lying or sitting position
  • extra heartbeats
  • extreme fatigue
  • fainting
  • fever
  • itching of the skin
  • joint or muscle pain
  • large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs
  • numbness and tingling of the face, fingers, or toes
  • pain in the arms, legs, or lower back, especially pain in the calves or heels upon exertion
  • painful or difficult urination
  • pale, bluish-colored, or cold hands or feet
  • pinpoint red or purple spots on the skin
  • red, irritated eyes
  • redness of the face, neck, arms, and occasionally, upper chest
  • redness, soreness or itching skin
  • shakiness in the legs, arms, hands, or feet
  • slow or irregular heartbeat
  • sore throat
  • sores, ulcers, or white spots on the lips or in the mouth
  • sweating
  • swelling of the face, fingers, feet, or lower legs
  • swollen glands
  • trembling or shaking of the hands or feet
  • unsteadiness or awkwardness
  • unusual bleeding or bruising
  • unusual tiredness or weakness
  • weak or absent pulses in the legs
  • weakness in the arms, hands, legs, or feet
  • weight gain
  • yellow eyes or skin
  • acid or sour stomach
  • belching
  • heartburn
  • indigestion
  • lack or loss of strength
  • muscle cramps
  • sleepiness or unusual drowsiness
  • stomach discomfort, upset, or pain
  • abnormal dreams
  • anxiety
  • back pain
  • bad unusual or unpleasant (after) taste
  • bleeding gums
  • blistering, crusting, irritation, itching, or reddening of the skin
  • bloating
  • bloody nose
  • burning feeling in the chest or stomach
  • burning while urinating
  • burning, dry, or itching eyes
  • change in color of the treated skin
  • change in sense of smell
  • change in taste
  • changes in vision
  • constipation
  • continuing ringing or buzzing or other unexplained noise in the ears
  • cracked, dry, or scaly skin
  • decreased sexual performance or desire
  • depression
  • difficulty with moving
  • difficulty with swallowing
  • discharge, excessive tearing
  • double vision
  • dry mouth
  • dryness of the skin
  • excess air or gas in the stomach or intestines
  • excessive muscle tone
  • eye pain
  • feeling of constant movement of self or surroundings
  • feeling of unreality
  • feeling unusually cold
  • flushed, dry skin
  • fruit-like breath odor
  • full feeling
  • general feeling of discomfort or illness
  • hair loss or thinning of the hair
  • headache, severe and throbbing
  • hearing loss
  • hyperventilation
  • increased appetite
  • increased hunger
  • increased sweating
  • increased thirst
  • increased urge to urinate during the night
  • increased urination
  • irritability
  • irritation in the mouth
  • lack of feeling or emotion
  • loose stools
  • loss of memory
  • muscle pains or stiffness
  • muscle tension or tightness
  • muscle weakness
  • nervousness
  • pain
  • pains in the stomach, side, or abdomen, possibly radiating to the back
  • passing gas
  • problems with memory
  • redness and swelling of the gums
  • redness, pain, or swelling of the eye, eyelid, or inner lining of the eyelid
  • restlessness
  • runny nose
  • seeing double
  • sensation of spinning
  • sense of detachment from self or body
  • shakiness and unsteady walk
  • shivering
  • sleeplessness
  • sneezing
  • stuffy nose
  • sweating
  • swollen joints
  • tenderness in the stomach area
  • thirst
  • trouble in holding or releasing urine
  • trouble sleeping
  • twitching
  • unable to sleep
  • uncaring
  • unexplained weight loss
  • unsteadiness, trembling, or other problems with muscle control or coordination
  • waking to urinate at night
  • weight loss

Oh look, a list of things a human might feel. 

I have to get off of these meds.

05
Feb
17

There hasn’t been much to report lately — things are pretty stable.

I oscillate between depressed, totally fine, and a little manic every few days. I’m in constant but manageable pain; my knees and ankles, other joints, my left flank, my face. I’m tired pretty much all the time, but rarely to the point that I can’t get out of bed, so I power through. I’ve had bronchitis for two weeks and the coughing has a caused a constant soreness in my ribs and chest.

My main kidney numbers still aren’t getting any better — my creatinine has been going up, it hovers around 2.5 – 4 which is where it was before I checked into the hospital three months ago. Despite that, my GFR is holding steady at around 12-14. I’ve been picking up more subtle symptoms of kidney failure, like bad breath caused by waste build up in my body and cramps in my legs and hands. It’s a total blast. Josh says my other numbers are showing improvement though. My potassium and phosphorous levels are good and my protein filtration is better. I asked if that’s just because I’m limiting stuff in my diet, but he assures me it’s indicative of my kidney function improving. Either way, despite my borderline numbers it sounds like I’m still aways from needing dialysis, so that’s good.

I was supposed to have my transplant evaluation a couple weeks ago, but I had to postpone it because my insurance didn’t approve it in time. The next available slot isn’t until the end of February, which I’m scheduled for and has been approved and I’ve done my blood test for already. Once that’s done, we can start screening potential kidney donors for me. I have some very generous volunteers lined up. No one has anything positive to say about their experience trying to get a kidney transplant. Mine is already not off to a great start. I’d like to get it out of the way before Trump fucks up our healthcare system even more.

img_1278

Proof!

My blood pressure is still a little high — 135/90 most of the time. We’ve switched up my meds again; off a beta blocker and back to an ACE inhibitor, but I think it’s making me feel worse so I’m going to talk to Josh about it. Still on the calcium channel blocker. Still on antibiotics. Still taking tons of calcium supplements, vitamin d, and iron. Still on the prednisone, but we’ve tapered my dosage to half what it was when I left the hospital, and I get to taper it to even less over the next month, so maybe I’ll get my face and sunny disposition back soon. I am a little concerned that the boost from the steroids is what’s kept me going the last few weeks and without them I’ll be too tired, but that’s not worth these side effects.

Now that I’ve successfully hacked my diet (seriously, someone in kidney failure should not be eating meat or dairy — it’s really fucking simple, and I can’t believe no one said that) things are better. Sausage D doesn’t happen very often anymore; I keep my feet up as often as possible, so I can wear my normal shoes again. Last time I had chemo I only gained 6 lbs from the fluids and it only took me a few days to lose it. I have chemo again this week, hopefully it goes about the same way.

I’m not too sure what’s up with my anemia. My numbers were trending well, but they dipped a bit last week and right now I am covered in bruises and I’ve been really tired. I’ll get more tests at chemo this week, so I guess we’ll see where things are.

Besides being tired and in pain and my face being totally swollen all the time, I’m basically fine I guess. Work is going to stop being so crazy now that it’s not January anymore, so hopefully I can spend some time looking into alternative treatments to manage my symptoms. I also really need to make an eye appointment because my eyes are fucked up and I don’t know if it’s because of the meds or just strain or both, but I feel like I’m going blind half the time and it’s hurting my head. I’ve been trying to exercise more — walking around, taking the stairs a bit, but it really wears me out and hurts my legs, so I’m not sure what to do about that. I had to jog about half a block to catch my bus home the other day and my legs were really close to collapsing under me. But, my heart felt good!

I’m over this you guys.

02
Jan
17

Research Mode

Things have been a little rough, but I’m turning them around.

As it turns out, going through the Stages of Grief on steroids during the holidays with your family around is the recipe for a horrible nightmare.

Or at least pretty serious depression. But who can tell, with the steroids?

But, the holidays are over now and I’ve reached Acceptance (again, for now) and I go back to work tomorrow and I’m feeling a lot better. For now. Until my next mood swing. Or spot of bad news.

I’ve done a lot of research into my disease this week. It started as research into an alternative diagnosis, spurred on by a few things:

  1. Everyone keeps talking about how “very unique” my case is.
  2. IgA Nephropathy is a very dissatisfying diagnosis — cause is unknown and it’s a bit of a catch-all.
  3. IgAN is not a something I want to have — it has no cure, known treatments are basically 50/50, and it could recur even if I get a kidney transplant.

So, I went hunting for a new diagnosis. It seemed promising at first. All of the American scholarship around kidney disease is typical American bullshit — focuses exclusively on old white guys with kidney disease, skewing all of our data. In America, we don’t even really bother screening for kidney problems until it’s way too late, lest we give people an opportunity to actually adjust their lifestyle and not kill themselves with sodium overload and a high-protein diet. It’s so fucking stupid. In Asia, they screen young people regularly for early signs of kidney problems, which tons of people have, so they change their diet and repair their kidneys and live longer without chronic kidney disease. The fact is we’ve just accepted that the kidneys degenerate over someone’s lifespan and have decided to not really do anything about it and then just blame it on high blood pressure or diabetes when it becomes a problem when people are 70. The problem I’m having is something has caused my kidneys to degenerate extremely fast 40 years early and no one call tell me what that is, which is exceptionally frustrating. I didn’t suffer an injury to my kidney, I’m not diabetic, and it’s unlikely I had high blood pressure before my kidneys were damaged. So what caused this?

I went looking for cases of kidney disease in other young people in other parts of the world. I was able to dig up that dehydration is most certainly a factor — kidney disease is killing young farm workers in Central America and India at alarmingly high rates. Unfortunately, I have about as much in common with young farm workers as I do with someone who’s 70, so this information is of limited use to me. I did discover that what’s happened to me is starting to happen to more young Americans, and also younger people in urban India. There’s certainly a lifestyle component, but that alone doesn’t explain what’s happened to me — otherwise everyone my age would be in kidney failure. High blood pressure is a red herring. It comes with the kidney failure. If I had HBP long enough to cause kidney damage I would see damage in other organs as well, which I don’t.

I live a substantially healthier lifestyle than the average person my age, so the only thing that actually makes sense is that something totally stupid and random like igAN would happen to me. I’ve been doing a lot of things right since college — my vegetarian diet is already lower protein than most people’s and much closer to the recommended. I had already been making efforts to reduce sodium. I was already avoiding things like transfats and high-fructose corn syrup and refined sugars and other additives and flavorings and things that aren’t actually F O O D. I made all of these changes 7-8 years ago. The only thing I could have really done better is eat less cheese. I could have been exercising more, but I walk a fucking ton, more than enough to keep healthy. Healthier than average. Healthy enough to avoid fucking major organ failure. I’ve already been drinking less alcohol the last few years than I was before. I’ve limited my coffee to one strong one a day (most days) for the last five years. I’M A HEALTHY FUCKING PERSON. Which I’ve had confirmed, aside from my kidneys, all of other organs are in tip-top shape, including my heart and my liver which are now at the greatest risk. My blood sugar is great. My cholesterol is normal. It’s really frustrating to be googling lifestyle changes to help my kidneys and find a list of shit I’ve already been doing for 8 years. Salt being bad for you is not fucking news to me. I guess I’ll eat less cheese and chocolate. I’ve already cut out alcohol and caffeine.

So, I took the long way around, but ended up validating the igAN diagnosis.

1ba8dbeb1b1f07dd682caca896fdf59d

A disease of the kidney, specifically a form of glomerulonephritis: an inflammation of the glomeruli of the kidney.

“Very rarely (5% each), the presenting history is:

The proteinuria and cutaneous edema characteristic of nephrotic syndrome are my two main kidney disease symptoms — they’re the ones I had leading up to my hospital stay and the ones I still have now that my kidney function hasn’t improved. Plus the hypertension and anemia I presented with, but don’t have anymore. My anemia is nearly cured, maybe, and my hypertension is managed with meds for now. I get other kidney symptoms; flank pain, so far only on my left side, as punishment for not following my diet well enough and straining my kidneys; and still fatigue. Everything else I’m dealing with is side effects from treatments, or issues related to my pH/electrolyte/nutritional imbalances due to kidney failure, which are mostly managed with meds. For example, my calcium absorption is all fucked up, plus the steroids are actively trying to wreck all my bones. I’m at risk for hypocalcemia, so I’m taking a ton of calcium supplements everyday, but if my eating schedule gets weird, or I forget to take them, or I take them to close to food or other meds that block absorption, I don’t get enough calcium, and I get tremors (which could also be from the steroids, or just fatigue), or if I do this badly for over a day, I get cramps in my hands and feet. My left hand, in particular, making it really hard to use. So, it’s a fun trade off. I can eat cheese and insure I get enough calcium, but I’ll know I’m straining my kidneys when my back/side starts fucking killing me; or I can not eat cheese (be miserable) and be hyper-vigilant about my calcium absorption otherwise my left hand freaks out while I’m trying to drive somewhere.

Now that I’ve settled into my diagnosis, shitty as it is, I feel more proactive again. I’ve doubled down on research into my disease. Josh has thrown all the available conventional treatments at me already, and there’s basically only a 50% chance they’ll have any positive effect. The best case really just postpones the inevitable — Stage 5 kidney failure. Stage 5 means dialysis and kidney transplant if I want to live, so postponing that is good. My numbers are already technically Stage 5 numbers, but I’m still symptomatic of Stage 4, which is good, but not comforting in the slightest. Finding a living donor kidney and setting up my Backup Plan is still Priority 1. (Has been difficult to get any traction during the holidays — the transplant program office has been closed for non-emergencies.) Transplant comes with a ton of new bullshit and it won’t cure my igAN, so I’m probably looking at immunosuppressants for the rest of life, which is really really depressing. So we’re just going to not think about that now because there’s nothing we can do about it and it launches me into a pit of despair which I already cried about for like five straight days.

99dc561e3066e72845e86a29ecd889e4

What I can do something about is my diet, which I’ve been led astray on a bit. I should definitely continue being vegetarian. A low-potassium vegetable-based diet is the best thing for my kidneys, not to mention the rest of my body. There’s too much protein and phosphorous in most dairy, so I’ll be limiting those more strictly as well. This makes me feel better. Onions, red bell peppers, garlic, parsley, and apples are my kidney superfoods and I’m going to eat them everyday. Over the Christmas weekend I ate way too much cheese and chocolate and I super paid the price for it — I had persistent flank pain for days, some of the worst fatigue since the first few days after leaving the hospital, headaches (not migraines), and just the most depressive fucking mood. First I blamed what I assumed (hoped?) was low blood levels from my chemo nadir, but labs came back and my blood levels were up, so that wasn’t it. Then I ate just vegetables for two days and felt better. Vegetables are the best.

Because my blood levels were so good the other day I didn’t get my hormone boost, so now we’re experimenting to see if they go down without it or if I’m not anemic anymore. The phrasing the nurse practitioner used was “it’s a little risky — hopefully in a week we don’t see you circling the drain“. That seemed a little indelicate, for someone I had just met, even by my standards. But anyway, it’s almost a week later and I still feel pretty good. I have chemo next week, so we’ll find out then. It took me a week to lose the 8lbs I gained from chemo last time, so looking forward to that again. Right now I’m down to 123lbs, which is nearly what I was before I went into the hospital, so normal. I’m still Staypuft from the prednisone, but less Sausage D in general. I’m not due to see Josh for another 3 weeks, but I think I need to get him on the phone sooner, because we should be tapering my prednisone sooner than that if we can. I finally had my follow-up with my PCP last week. Last time I saw her was the day we met and she immediately identified I was in kidney failure and threw me at Josh, so obviously a lot has happened since then. I was still in a pretty fucked up emotional state when I saw her. She offered to refer me to a therapist.

I get a week of normalcy this week, which I’ll need because work is going to be crazy. Getting through it with my prednisone mood swings is probably all I can fit on my plate.

 

 

 

17
Dec
16

Kidney Donor Info

Read these first and think carefully if this is something you really want to do:

Kidney Donation Info

Top 10 Questions Prospective Kidney Donors Have
All expenses for the medical work-up and transplant surgery are covered by my health insurance, but not additional expenses, such as travel, or lost wages if sick time/disability from work is not available.

Kidney Donation After-Care Overview
2-3 days in the hospital, Vicodin, and limited activity for 4-6 weeks!
Risk of having a life-threatening problem with donating a kidney is 1 in 3,000.
The risk of minor complications such as a minor wound infection is about 2-4%.

It’s major surgery! They remove part of your body! Anything can happen!

If you’re still interested, fill out this health questionnaire and find out if you are a viable donor:

Health History Questionnaire
A living kidney donor is usually between ages 18 to 55.
A history of heart disease, chronic lung or liver disease, kidney disease, hypertension, diabetes, cancer or untreated psychiatric disease usually rules someone out. Smoking, obesity, and other health issues are considered on an individual basis.

Living_Kidney_Donor_Transplant_Screening___California_Pacific_Medical_Center__San_Francisco___Sutter_Health.png

Paired Kidney Donation

In the event that you really want to give me your kidney, but we are not a good match, there is another option. You could be a good match for someone else who needs a kidney, who has a donor who is a good match for me, so we could swap donors and both get kidneys! Functioning kidneys for everyone!

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. 




archives.

Categories