28
Jul
17

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.

07
Jul
17

2 Weeks

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

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

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

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

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

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

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

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

Here are some mostly not graphic photos!

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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. 

29
May
17

24 Days

24 Days to my Kidney Transplant Surgery!

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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. 

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14
Mar
17

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.

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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!

07
Mar
17

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.

26
Feb
17

Kidney Wanted

Finally had my Kidney Transplant Evaluation this week!

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

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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!

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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”.




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