Five Weeks

I'm officially not anemic anymore!

My creatinine is well below 1!

My GFR is holding at 95! 95!!! Up from 7!

I feel great! My incision has healed up nicely. I'm hardly experiencing any discomfort at all anymore. I'm getting my strength back, walking as much as possible, and going up stairs. I'm drinking, and staying out late, and still have plenty of energy to work five days in the office and go out on the weekends.

I have my life back. I haven't felt this good in years.

I got to taper my steroid dosage back down to 5mg this week. I don't seem to be experiencing much side effects from any of my new meds, except possibly some insomnia from my anti-rejection meds. I've been having a hard time falling asleep and only staying asleep for 4-6 hours most nights. So far, that's enough to keep me highly functional, though not ideal.

I was able to gain back 5lbs pretty quick, but I'm still a bit underweight. Things seem to have plateaued, so I think I'll be stuck here until I can do more physical activity and build some muscle back up.

My twice a week labs are getting pretty tiresome, but maybe those will get reduced at my doctor's appointment in a couple weeks.

Everything's great, and I'm so, so happy.

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.

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. 

24 Days

24 Days to my Kidney Transplant Surgery!

Here’s me and TK when we were young and adorable.

Here we are more recently as mature adults.

Sorry for the radio silence, but there hasn’t been much to report besides the agonizing wait we’ve been enduring to find out if TK can be my donor during which my condition has continued to slowly deteriorate. Nevertheless, let’s recap what the last couple months have been like.

J and I attended that orientation for dialysis I mentioned when it started to seem like that would be a necessity. We spent a couple hours with a guy old enough to be my dad and a guy old enough to be his dad learning the basics of dialysis I had already taught myself from the internet. What we found out was the timelines for getting on dialysis didn’t really jive with our transplant plans — it takes several weeks to get all the shit together you need to do dialysis if it’s not an emergency. By the time I would have gotten dialysis sorted out, I would have had a new kidney. So, instead, I’ve been “toughing it out”. Seems like I dodged a bullet.

It’s been pretty difficult. Every time I start feeling extra bad I panic that I’ve hit the tipping point and worry I’m going to wind up back in the hospital for weeks. It’s completely insane that I’m still so high-functioning with the shape my body is in right now. All of my important labs have been hovering around the magical number 7, which is kinda funny, but also terrible considering these numbers aren’t supposed to be anywhere near each other.

My GFR, creatinine, and hemoglobin are all hovering around 7.

My GFR would be great if it was anywhere over 50.
Creatinine is supposed to be less than 1.
Hemoglobin should be over 11.

You can see how this is very bad.

Most people are forced onto dialysis with their creatine dips down to 8, they start dying without dialysis when it gets to 6. Most people have to get a blood transfusion when their hemoglobin is less than 10. Mine’s been less than 10 for six months, but a blood transfusion will complicate my transplant so instead I’m just kind of dizzy all the time. My left side constantly hurts, sometimes worse than other times. And I’m so, so tired. But besides that, I don’t feel too rough. A few weeks ago I was feeling really bad for a few days and it seemed like dialysis on the horizon for sure, but then we figured out we didn’t taper my calcium supplements when we tapered my steroids and I was just poisoning myself with calcium. I stopped taking that and felt a lot better. I’m on my last few days of steroids, finally. When I got down to 8mg I started feeling like myself again, mentally. Around 5mg I got my face back, almost. I can tell you that the side effects of chemo and steroids made me feel worse than this kidney failure is making me feel. Nothing’s making me feel as bad as the hypertension was making me feel.

I’m still working full-time, but that’s been getting harder. I haven’t been able to do a full week in the office in weeks, requiring at least one day working from home to rest. Luckily, my company continues to be really awesome and accommodating of that. I spend most of my weekends on the couch, resting, but I try to at least go out for breakfast or see friends when I’m feeling up to it. I’ve been watching a lot of tv.

TK had to go through a whole mess of unpleasantness to find out if she could give me her kidney. And we still have the entire major surgery and weeks of recovery to look forward to! I actually have a ton to look forward to, most of which is food, but also not being tired, dizzy, and in pain all the time. Also, whiskey. And did I mention food? I guess I’ll probably still be in pain for a while, it’ll just be different. And I’ll be allowed to take pain killers again because I’ll have a kidney that works. I’m trying not think too specifically about the actual surgery. J and I were talking about it for a few minutes last night and I nearly fainted, haha. This is one of very few situations where I don’t really want to know how something works or what’s going to happen, I just want it to be over.

Unfortunately, things won’t really be over once the transplant is done. Because an autoimmune disorder is what caused by kidney failure, I’ll still have chronic kidney disease and an autoimmune disorder. It’s possible the same thing that happened to my kidneys could happen to my new kidney. The best I can do is be kind to my kidney and try to catch it earlier this time. Because I’m getting a living donor kidney from a relative, the chances of rejection are lower and I should be able to get a good 15 years out of it, at least. Science, you have 15 years to master 3d printing kidneys–chop chop!

Here’s some weird photos of how things have developed. 

This slideshow requires JavaScript.

More bad news I’m afraid: we find out a couple days ago that J can’t be my donor. Mom and TK are still in the process of getting tested, so hopefully we have better luck with one of them. Fingerscrossed!

In the meantime, my health is not in total freefall — my labs from last week came back and my estimated GFR popped back up to 11, phwew! Unfortunately, I still feel like shit more than I do not feel like shit lately and if I don’t find a kidney soon, dialysis is pretty much imminent. I had an appointment with Josh yesterday to check-in and go over options. We talked about my recent symptoms and everything’s pretty consistent with uremia due to kidney failure, I can only expect it to get worse as waste continues to build up in my body. The only thing I can really do is continue watching my diet and educate myself on dialysis so I know what I want to do if/when the time comes.

Josh referred me to a dialysis info session I have to go to, but he gave me a brief overview.

There’s two types of dialysis: hemodialysis and peritoneal dialysis.

Hemodialysis is what people traditionally think of — a catheter or fistula is hooked up and blood is removed and filtered through a machine before it’s returned to my body. I got a taste of this while I was in the hospital, as the plasma aphaeresis treatments I was getting were a very similar process. I would have to do this every other day or so at a special facility and it would take about 4 hours. That’s a pretty substantial chunk of my week.

Peritoneal dialysis is, as Josh has described it, “underutilized”. It involves hooking up a tube into my abdomen through which fluid can be added and removed. This fluid flushes my abdominal cavity and removes wastes from my blood by using the lining of my abdomen as a filter. This can either be done a few times a day, or with the help of a machine, every night while I sleep at home. This puts a lot of responsibility on me to stick to a schedule and keep my tube site super clean and figure out how much fluid I’m supposed to use, but it lets me have a more flexible schedule and normalish life. It also does the job my kidneys should be doing every day again, so I should feel better more often and I’ll be able to eat potassium again. Josh really tried to sell me on this peritoneal dialysis and he did a good job, but I still need to obsessively google everything so I can make an informed decision.

Ideally, I’d still like to find a kidney and avoid dialysis entirely. But Josh said it’s important I don’t let myself get completely rundown before starting dialysis, and I just don’t have that many kidney donors in the testing pipeline right now, so better to get my ducks in a row before it’s an emergency.

If you’re healthy and you’d like to give me your kidney, please read this post.

In other news, I don’t have to take the antibiotics I’ve been on for 3 months anymore and we’re going to continue tapering down my steroids! A mg a week until I’m down to 5mg. Very exciting!

chemo nomo

I was supposed to have my next chemo treatment today, but I’ve been spared that unpleasantness. We’ve canceled my remaining chemo. It isn’t working. 

Josh called late yesterday to see how I’m feeling. He got my most recent lab results. My creatinine is over 5. My GFR is down to 9. If it gets much lower I’ll have to go on dialysis until we find me a kidney. I’m getting new labs tomorrow to see where we’re at. 

I feel the same–relatively “fine”. My sides/back hurt often, sometimes a lot. I always have a bad taste in my mouth from the wastes my kidneys aren’t filtering. My edema hasn’t gotten any worse. My anemia’s doing its thing. My blood pressure is totally under control. My prednisone dosage is down to 10mg, in a couple weeks we’ll taper it down to 5mg and I’ll hopefully get my face back. 

J is still getting tested to be a donor. We found out today that the tissue typing came back with half our markers matching, which makes sense since we’re half sisters. Next is the cross-match test where we see if my blood tries to attack J’s blood. J’s still undergoing her physical to make sure she’s in tip top shape, but so far so good. 

There doesn’t seem to be much I can do besides continue my diet and stay hydrated and vigilant for worsening symptoms. 

Maybe now my leg hair will grow back. 

J and I watched an ep where Blanche’s sister needed her kidney.

Kidney Wanted

Finally had my Kidney Transplant Evaluation this week!

I have been evaluated and found deserving of a donor kidney! Hooray!

No real surprise there, as the ongoing theme continues to be I am in perfect health, besides my mysteriously failing kidneys. They’ll run some tests just to make sure, again, but looks promising. It also sounds like, barring complications, my recovery time is likely to be about half or less than what is usually projected.

As expected, it was mostly bureaucratic hoops. We didn’t really learn any new information, as it was mostly geared towards people who don’t read pamphlets or use the internet. We “watched a video” which was actually a narrated power point presentation containing identical information as a packet I received and memorized three months ago. We spent more time in waiting rooms than talking to medical professionals, as usual. We spoke with another nephrologist, who ran a basic physical on me; and a social worker, who asked me a bunch of questions I could easily lie about, but didn’t. The whole thing kind of felt like starting a job at Target. You take a questionnaire with a bunch of extremely obvious behavioral questions and you watch a safety video about the dangers of wrapping a power cord around a ladder during a flood or something.

ANYWAY, that’s over with and now I’m officially on the UNOS list and eligible to receive a donor kidney!

I have type O blood, which is the rarest recipient type — I can only receive another type O kidney.

The current wait time for a type O kidney in the Bay Area is 6 years.

I am already in Stage 5 end-stage renal disease (ESRD) according to my numbers; GFR is holding steady at about 13, and my creatinine continues to slowly climb–it’s at about 4.5 now. It’s been months since I was hospitalized and they’re still not getting any better. Without a new kidney, it’s only a matter of time before I start showing symptoms and need dialysis to live. By all accounts, being on dialysis is terrible. Plus it reduces my life expectancy significantly and makes it more complicated to get a transplant. Time is of the essence! Luckily! I have a lot of caring people volunteering to give me their kidney. Even if we don’t share the same blood type, or aren’t a good match due to antibodies, a viable donor could still help me get a kidney through paired donation.

My transplant nephrologist has made it known to everyone in the transplant program that “we should be moving faster than we normally would”, and that announcement has already been effective. We were told my sister would have to resubmit the questionnaire she filled out months ago before she could start her lab work up and that there would be a totally arbitrary bureaucratic two-week waiting period before she was even called back to schedule that. We were waiting for me to get my usual lab work done when I received a call telling me Jess wouldn’t be waiting after all and could go ahead and get her labs done that day. Later that day, they called my mother and sent her the lab order to get hers done as well. Things are happening!

Once a match is found, we could be scheduling surgery inside of six weeks. Jess and I suspect the thing we’ll end up waiting on is insurance.

If you would like to give me your kidney, please read this informative post and start by filling out this questionnaire. You will need my full name and birthdate — please message me privately if you have any questions.

In other news, I’ve mostly bounced back from that hemoglobin dip I saw a couple weeks ago that tanked my energy for a few days — it’s back up to 9. Apparently, 8.5 is about my cutoff for feeling like shit. Thanks anemia! Still not sure what caused it, but I’m still hoping to solve it with some adjustments to my diet. I’ve also bounced back from that mishap with my BP meds that happened around the same time. I no longer feel like ALL OF MY BONES ARE COMING APART, which is great. Also! My BP has been around 125/80 which is super normal! Hopefully it holds. My steroid dosage is down to 15mg now (from 60mg when I left the hospital) and I’m having a lot less side effects, so that’s substantially improved my quality of life. Insomnia isn’t really an issue anymore and my mood feels more stable overall most of the time. My mostly-vegan, low-sodium diet continues to be the best for managing my fluid retention, so Sausage D isn’t much of an issue anymore, even with the added fluids from chemo every month. I’m in pretty good shape. Hopefully, as we continue to taper down my steroids, my face will go back to normal and if I can keep my hemoglobin up I won’t be so tired. I’m still in near-constant pain on my left side, which concerns me, but doesn’t seem to be concerning anyone else. Sounds like so long as I’m not vomiting again, fainting, or peeing blood, I’m “fine”.

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.

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.

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.

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?

Might be less stressful for everyone involved.

Seriously.

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.

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:

• Nephrotic syndrome (3-3.5 grams of protein loss in the urine, associated with a poorer prognosis)

• Acute kidney failure (either as a complication of the frank hematuria, when it usually recovers, or due to rapidly progressive glomerulonephritis which often leads to chronic kidney failure)

• Chronic kidney failure (no previous symptoms, presents with anemia, hypertension and other symptoms of kidney failure, in people who probably had longstanding undetected microscopic hematuria and/or proteinuria).”

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.

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.