Sunday, February 16, 2020

Kidney Saga part 22

One of the more frustrating aspects of the whole ordeal has been the prescriptions. I should have enough brainpower to have told each doctor as I had appointments what I was running out of, but I didn't, and for at least three medicines I actually ran out. Sorting out who was the provider to request a refill from and how to do that was annoying.

Even more annoying was that I started the process in what should have been enough time, but ended up not succeeding on the first or even the second try in both cases. I'm going to be much more careful, now, but it was a headache I did not need on top of everything else. No wonder people die from not getting the right medications, when it can be that difficult to manage it all.

Fortunately, all appears to be settled on that front. I know what each medicine does, and who is supposed to provide it. Hopefully that will be enough to make sure I keep getting the stuff that will keep me alive.

On Tuesday, Feb 11, I felt pretty darn good in the morning and even managed some computer laptop time with Inky on my legs. But after breakfast I just crashed. I mean, I slept pretty much the entire rest of the day, even after we'd opened up windows to air out the house. Mother-in-law arrived, and I had a conversation with her, but I don't remember it.

Wednesday was better. The raging rash is back to being mild, the medication tweak is still working to reduce the edema, mother-in-law brought hair shears to reduce the amount of fur on my head, and she also brought new food ideas. All together, good news.

On Thursday, mother-in-law made low sodium biscuits and gravy for me for lunch, thus making sure one of my cravings was dealt with in the neatest fashion. Very rare for me, I needed to have extra pepper added to make up for the lack of salt, but it was very good.

My face is swollen most of the time, which is annoying. It's a side effect of prednisone, which is, as the doctor said, "an extremely useful but very obnoxious medicine". It keeps people alive, but the side effects are nasty.

Mother-in-law also trimmed my hair on Thursday morning while I still had energy enough to sit up. It felt good.

Unfortunately, I pushed a little too hard on Thursday since I felt good enough to get some stuff done, and as a result had a big crash Thursday night and Friday morning. *sigh* I will never learn.

Full Kidney Saga

Saturday, February 15, 2020

Kidney Saga part 21

I can't entirely avoid current events, although they are making me ill in ways that have nothing to do with my kidneys. Thus, on Wednesday, Feb 5th, I made this little joke: "I think it's probably just the prednisone messing with me, but I swear I was just informed that my messed up kidneys actually won the Iowa Caucuses." It quickly got a lot of amusing responses that kept my spirits up for some time, including a campaign ad:

The morning went really well that day, but I had a really really bad office visit at the kidney doctor. Fortunately, everyone was very understanding. Unfortunately, the prednisone didn't let me relax at all and I felt awful mentally the rest of the night. As horrible as I felt, the next day wasn't any better and while I really wanted to see Eric's mom, the fact that the mountain passes prevented her visit didn't disappoint me as much as it could have. I really wasn't fit for company.

The morning medicine hit tends to take me out for at least an hour. I have to avoid sunlight and garlic, so I'm a vampire. I have lupus, so I'm a werewolf. And the medicine turns me into a zombie. What other monsters have I become?

During the office visit on Wednesday, the doctor made a small tweak in one of my medicines. Just upped the dosage a tiny bit in the hopes that it will start working. As it's a very dangerous medicine while my kidneys are weak, we have to be super careful with it, but it wasn't doing the job it was supposed to be doing. As of Saturday, it started working. And included some side effects I'd been told about in the hospital by a nurse but hadn't experienced in the hospital. Including one that I dubbed "flaming butt" once she explained the sensation. Yeah, I got it. Ouch.

When I got a new prescription of the tutti-frutti Satan spit, Eric told the pharmacist that I hated the taste, so they gave me an oral syringe to try. It is AMAZING! I can squirt most of the stuff over my taste buds and have only a little aftertaste of it. The joy of not having to actually taste the stuff is supreme. I never thought a tiny change could be so nice.

By Monday, Feb 10th, it was clear the dosage tweak was working, giving me some hope for the future. With mother-in-law due to arrive on Tuesday to give Eric some relief, life seemed to turn a slight corner.

The presnidone memory dumps that day were very odd. Back at Dimmitt Middle School, there were groups of kids who would breakdance before school, at lunchtime and after school in one of the main lobby areas. I don't recall stopping to watch them much, but apparently they made a lasting impression on some of my memory cells. To my utter amazement, I can even remember some of their faces. Those were much better memory dumps than what I had been getting.

The blood draw on Monday went smoothly, which was a nice change, and then there was nothing to do but wait for results.

Full Kidney Saga

Friday, February 14, 2020

Kidney Saga part 20

I never thought of a shower as something difficult. I mean, it's just getting clean, right? It's not a job. It's actually pleasant most of the time. Not when you are this sick. It is a major chore for someone who can barely stand for more than a few minutes. And trying to get my hair clean? Nightmare. I have very short hair, and it still was difficult. I wanted to shave my head after dealing with the shower, but sis-in-law (who is a nurse) recommended not making drastic hair decisions while on prednisone.

As February started, Inkwell began to express his sadness that I cannot play with him properly. He would sit outside the bedroom or computer room door and make sad noises and sing the songs of his people. He also spends a lot of time sitting on or next to me, trying to keep track of my movements.

On Monday, Feb 3rd, I had two appointments. The weekly blood draw and the cardiologist. The cardiologist took one quick look at the raging rash, which we were treating with an over-the-counter cream, and prescribed an ointment that is MUCH stronger. She agreed that it needs to be under control before I can advance. She was worried about my blood pressure readings, as they were high and the machine in her office confirmed the numbers on my home machine. So she upped a beta blocker, since it wouldn't affect the kidneys at all. It helped by the next day.

The swelling was awful, and she wanted to up one of my medications, but because of the danger to my kidneys she decided to let the kidney doctor make that call. The bloating is disturbing. I look like one of those ancient hearth goddess statues or an eldritch horror. If my stomach grows tentacles, I'm right out.

She also found a "book" of recipes that are kidney and heart friendly, with low sodium. I wanted to try them all immediately, but I am still too shaky to cook anything, so it'll have to wait. I was startled and supremely interested to see a recipe for biscuits and gravy in the book. It apparently needs certain special ingredients, but maybe we can order them through the local grocery or something if they don't have them.

Eric got a jury summons in the mail, which was just what we didn't need at this point, as he is the sole caregiver and provider of the family. I hope they accept his excuse outright and we don't have to figure out how to deal with the legal system. He attempted to get a doctor's note, but they only give you five days to respond, and does ANY doctor respond in five days if it's not a medical emergency?

The prednisone continued to give me memory dumps. On Monday they were mostly very old songs from my childhood. Some of them I couldn't believe existed until I Googled them.

The blood draw should have been uneventful. The blood itself was easy - a competent tech managed to pull enough from my veins on the first try, which is a new experience. The problem was the urine. I went dry as soon as I entered the hospital, which caused a mood swing and crying and embarrassment. The tech was very understanding and helpful, but it still felt somewhat traumatic.

On Tuesday, Feb 4th, we got a letter from our insurance informing us that the local hospital was no longer covered due to the bankruptcy and the closure of its Yakima campus. I once again rejoiced that I made the decision to go to Prosser Hospital instead of the local. It was a decision based in experience and reason, but it could have been so much worse for us.

Full Kidney Saga

Thursday, February 13, 2020

Kidney Saga part 19

I started to make a list of foods that I plan to have as special treats when I get better. Then I realized I would be listing so many foods I would probably take a year to get through them all. The highest on my list is biscuits and gravy, my favorite breakfast. I also miss pizza. And everything chocolate - although I can have dark chocolate and tiny amounts of milk chocolate. Pies. Pasta in rich tomato or alfredo sauces. Cheese. Ice cream.

I got a pair of compression socks and was even able to put them on, but due to the advanced swelling and the lack of going out, they didn't help as much as I'd hoped. I actually had a very good Monday, and was expecting to go to a blood test, but the orders didn't get sent to the lab, so I ended up staying home. Tom on Facebook suggested getting "donning gloves" to help put the socks on, and after looking at some Amazon reviews, someone suggested using latex gloves if you don't have anything else. As I have a small box of latex gloves, I just used those and it worked.

Unfortunately, I way overdid it Monday morning, and by evening was crashing hard. The next day was awful, but Dr. Inkwell was on the job with some serious purr therapy all morning long. He also learned that "Sorry kitty" is code for "Mommy has to get up and you need to move off her legs right now because she's getting up whether you like it or not." He has been responsive to that phrase ever since, jumping off me almost as soon as I say it. He also started to shadow me to the toilet and back again in the middle of the night, which is not usual behavior for him. He's being a good doctor cat.

A friend sent an Amazon gift card, which went a LONG way toward helping with a variety of needs that I would have delayed on otherwise. The results have been extremely useful, and saved me a lot of headaches. I've already used the entire card, but every little bit was of extreme value to me. Thanks, Stan.

My worst problems were a lack of listening and reading comprehension. I can read, but it takes four or five tries to make the words make sense. This is extremely frustrating. Worse is the fact that I cannot listen to podcasts for the same reason. I'll hear the words, but they won't make sense. It's harder to go back and "re-read" a podcast, so I'm getting way behind and deleting a lot of podcasts. I also still have conjunctivitus, so my eyes are wobbly, which is extremely annoying.

On Thursday, Jan 30, the doctor decided to try to up my main medicine. This would involve doubling it for a week and seeing what happens. The first double-dose was that night.

The afternoon of Thursday, we opened a bunch of windows to air out the upstairs, which was getting rather stuffy. Inkwell was delighted, but it was a little bit cold. The next day we opened more windows and Inkwell spent a lot of time running up to me and chirping and meowing. I assumed he was telling me about all the cool smells, because he'd immediately run away to another open window to enjoy it.

Friday night's double-dose of the medication, my third, was followed by intense side effects that were as horrible as unexpected. I immediately messaged my doctor to let him know I was going back to the single dose because there was literally no way I could survive the side effects if they continued. I listed them for him, and last time I saw him he was startled and a little worried about it. The worst problem, though, was the minor skin irritation that suddenly turned into a raging rash that consumed the entirety of my skin between my stomach and thighs. To say it is painful is an understatement. It very literally knocked me out.

The big problem is that treatment requires me to increase the dosage of the main medication. I must get it up to a triple-dose in order for the treatment to work (and to get off the awful prednisone). If I cannot even handle a double-dose, this is a major setback. Right now, we are concentrating on getting the rash under control, then we will make a decision to either switch to the less effective medication, or try again.

Full Kidney Saga

Wednesday, February 12, 2020

Kidney Saga part 18

Thursday, Jan 23rd. Not a good day, bad swelling and discomfort. But, my mother and sister ordered me some magic cups ice cream/pudding and they arrived. It is a good way for me to get protein and also to help swallow pills.

The prednisone continued to mess with my mind, with wild mood swings and horrible memory dumps. The worst, though was a strange sense that time was bending. I can't put it into words, but it felt like I turned a corner on time instead of went in a straight line and everything was just wrong. It hurt and I had a panic attack from it. The next day, the steroid provided me with memories of childhood schoolyard chants that I've worked hard to get rid of because they are awful and I didn't want them in my head. Also some instances of being bullied. Lovely stuff, this prednisone.

In the meantime, mother-in-law continued to try different foods on me, including getting me a cosmic crisp apple to try out. It was very nice, but not something I'll go out of my way for. Maybe once it becomes more common and less pricey I'll get it more often.

Inkwell started sleeping next to me during the day, which told me I was tossing and turning a bit. He would be there when I woke most of the time.

I started to write everything down, every time I took certain medications, everything I drink or eat, every weight measurement, every blood pressure measurement, everything. I needed to make sure I was not forgetting. Part of healing is doing what the doctors order, and I have to write it all down or I forget.

Mother-in-law left on Saturday, just when Inkwell got used to her enough to start sniffing at her. He sang the songs of his people for the loss of his newest slave human.

News came on Sunday that the new virus out of China can be spread before people have symptoms. This made me even more determined to avoid all human contact. I noticed over my last few visits to the doctor appointments that a new screening question is "Have you had any contact with anyone who might have traveled to or been around someone who traveled to China over the last few weeks?" It's a serious problem for those of us without immune systems.

I started to worry about financial issues on Sunday, but realized if I started down that road I wouldn't stop worrying and forced it out of my mind. Instead, I concentrated on starting the blogging side of things, which is why you are getting these entries.

I also noticed that I am not depressed. Large "D" depressed. Oh, I'm "depressed" about being sick, but not the horrible biting depression that has followed me my entire life. The change from Celexa to Zoloft seems to have worked, which is a very good thing as I'm going through this lupus/kidney nightmare. Having depression on top of this would be soul-destroying. Celexa was very good for me for a very long time, but eventually stopped working. I didn't want to go off it because the lack of side effects made it lovely. But so far, Zoloft has been very similar to Celexa's first few years. So that's a good thing for me to celebrate.

Full Kidney Saga

Tuesday, February 11, 2020

Kidney Saga part 17

I got very excited on Tuesday, Jan. 21st, because I was able to make my own scrambled eggs without burning myself or the kitchen. Sadly, that was the last real progress I made for some time. Fortunately, my mother-in-law arrived that day, which is also hubby-Eric's birthday, to help out for a few days.

I realized I was Googling a lot of searches that began with "kidney friendly" to see if there was anything good I could eat. I'm a very bland food person. I don't like a lot of spices, which means I can eat the same foods over and over and not get bored with them. But at the same time, I'm human and like a little variety. So I started trying to find stuff I could make/have Eric make that would be a little different but still easy.

I was also very very curious to see my latest blood test results. I have since learned that I'm not going to see them before the doctor most of the time, but the online chart will eventually post them and I can view my own progress. The doctor showed me which results are the most important for my kidney functions, so I know which lines to look at in the graphs. While I can't interpret the results, I can certainly view the trends up or down, and that makes me more comfortable. Just knowing helps.

One of my pleasures in life is hot baths. Unfortunately, with edema (swelling) I cannot realistically take a hot bath without harming myself. Add in that there is no way I'd ever be able to get OUT of the bath once I was in, and I have a craving I cannot satisfy. When this is over, I promise myself one lovely hot bubble bath.

Inkwell was mildly alarmed when mother-in-law arrived, but he was still so much more concerned with me that he spent most of his time with me instead of investigating the stranger in the house. The morning of the 22nd, Wednesday, he did a full catscan on me once he was aware I was awake, then slept near my feet to keep an eye on me.

With mother-in-law in the house, some of the pressure was taken off Eric. She got me some decent food and started some serious cleaning that I'd neglected over the last few months when I didn't realize how sick I was. The relief was mental and physical. She also "invented" a "fried rice" dish that was just regular white rice with kidney-safe ingredient in perfect proportion. It was an absolute treat.

The blood pressure monitor my sister and mother got arrived and I started taking my daily BP readings. They were very very high, which worried me, but I also knew that home monitors can be a bit inaccurate. When I did finally get mine numbers checked at the office, they were similarly high... oops. So yeah, that's another concern.

The minor skin irritation was getting worse, but I didn't realize just how bad it could and would get as time passed. It was to become a serious issue soon enough.

Full Kidney Saga

Monday, February 10, 2020

Kidney Saga part 16

Sunday morning, January 19th, and Inkwell continued to be a nurse, making sure I slept after I took a shower. A minor skin infection started, which caused me intense pain which in turn drained what energy I had. If not for the infection, I believe I would have made some good progress on exercise and strength, but it became a major setback.

I got some birthday presents in the mail on Saturday, but couldn't enjoy them as much as I wanted to due to pain and exhaustion. Still, I felt loved.

Monday was my birthday. It was also the day I would go in for check-ups to two of the hospital doctors. In addition, it was also the last day I could legally drive because I needed to renew my license at the DMV this year. *sigh* I may not make the six-week grace period. It's a bit hard to get to the DMV when you are this sick.

Anyway, I woke up singing "Happy birthday to me, I need to go pee, I can't drink any water, but happy birthday to me." Which is a little pathetic.

The first doctor we went to was the lupus specialist, and she told me what I could expect once my kidneys are recovered. It was daunting to say the least. I didn't think it would be impossible, but with the skin infection causing me pain I was worried that my progress will be stalled. I was right to be worried.

She also set me up with a more reasonable medicine schedule when she pointed out the main kidney medicine needs to be taken on an empty stomach. That suggested a good time of day for the two doses (4am and 4pm) and that, in turn, got me onto a good schedule for my weigh-in. This has become routine since. The reason for 4am? Eric gets up then to get ready for work, so it just made sense. It's a little annoying on weekends, yeah, but it's just waking up enough to take a pill then waiting for the water to get through my system so I can do the weigh-in. It works.

The kidney doctor wanted regular maintenance reports from my body: weight and blood pressure being the two biggies. It was immediately clear I would need a blood pressure machine, but as we are broke and going to have trouble paying the hospital bills as it is, I was scared. Fortunately, several people offered a BP machine and my sister and mother just went and ordered me one.

However, the kidney doctor did have bad news for me, and I had to sleep on it.

My kidney functions plummeted once I was out of the hospital. The doctor ordered weekly blood tests, but if it gets really bad I could be hospitalized again or go on dialysis. There doesn't seem to be a big reason for it - I was following all orders and taking my medicine as I'd been instructed. Just the change in environment? Who knows. Bodies are very odd things.

The blood tests after the doctors' appointments were a nightmare. I mean, a true nightmare. It took three lab techs multiple tries before one of them managed to hit a vein that wasn't already tapped out. I was so happy when she managed it that I cheered aloud (which brought the other two techs running to make sure all the equipment was in order and they got every last drop they needed). Then I groaned and said, "I've never cheered so loud about losing blood before," which made the techs laugh in sympathy.

I was ordered to avoid salt. No added salt in any food I eat. As a kidney patient, I need to avoid potassium and phosphorus as well, but salt was the big thing. I'm on a low (under 2000mg) salt diet. Fortunately, food scientist mother-in-law was arriving on the 21st to help us work out a few meals that are safe and sane and to help Eric handle the extra caregiver pressure.

Full Kidney Saga

Sunday, February 09, 2020

Kidney Saga part 15

Thursday, January 16th, started a normal cycle of thirst, cravings for food I can't eat, and boredom. Inkwell spent a lot of time purring and cuddling me, noticing that I felt miserable. The mood swings from the prednisone started in earnest, as well.

Eric, who claims he cannot cook eggs to save his life, made a lunch of egg whites from a carton that turned out to be perfectly cooked. I was actually surprised because I've never been able to cook eggs quite as well.

A gift arrived from a friend to keep me company:

I also wanted to make pasta but couldn't manage, as my hands were far too shaky. I was expecting to be able to cook in only a few days. I wasn't expecting to get sicker.

Friday I noticed lots of Facebook ads about kidney health. No surprise. I also found a page of kidney-friendly recipes, so I could get some ideas.

Memory dumps started around Saturday. This is similar to the mood swings, but amazingly more painful. At first they were just random memories. Sometimes I'd suddenly be in a classroom with a vaguely familiar teacher, or in the middle of an interview while I was a reporter. The worst were the childhood memories, which almost all involved being bullied. Sometimes I would rewatch a movie in fast-forward - seriously, I rewatched "A League of Their Own" at least three times in memory dumps, usually taking about 20 minuntes each time. As least it was a good movie.

Some memory dumps were just music. Songs I'd long forgotten, coming back in excruciating detail. I remembered words that I would have sworn I could not. These have continued, and some of the songs my memory have dredged up really ought to be forgotten.

I woke on Saturday to a dream of a cookie eating contest. I was expected to be a contender, but could only eat five very small cookies before declining to continue. I remember the judge being angry at me.

After breakfast, Inkwell insisted on escorting me back to bed and forcing me to relax by not letting me use my phone. It was incredibly cute. Probably the best event of the day.

Full Kidney Saga

Saturday, February 08, 2020

Kidney Saga part 14

I woke up in pain on Wednesday morning. My left arm was killing me because I'd taken a nap on the couch and somehow slept on it wrong while Eric had cleaned the bedsheets. I wasn't entirely exhausted then, though, and felt mentally in a better place.

Eric gave me a bowl of grapes before I went to bed, and I woke up repeatedly in the night and reached over and took one, thus killing the thirst I was having from the fluid restrictions. It was nice.

The medicines I take in the morning are enough to turn me into a zombie for a few hours, at best, and put me into a virtual sleep coma at worst. The main medicine takes away my immune system so the lupus stops attacking my kidneys. The Satan Spit prevents other infections from attacking my lungs while I have no immune system. The presnisone does both jobs and many more unwanted jobs while I try to step up the first medicine. I also have a ton of medicines to keep my heart pumping, since that's also a concern. All of them together make me extremely weak and shaky. And the side effects are ghastly.

On Wednesday my insurance company called and I had a long talk with a representative about how KADLEC had treated me and whether or not I was satisfied by the care and attention I was getting. My insurance, Ambetter Coordinated Care, was purchased on the exchange (Obamacare) and seems to be a company absolutely determined to make people healthy instead of make a ton of profits. For me, both the hospital and the insurance actually seem to care that I'm getting better and neither consider me to be just a consumer of a product. That makes a ton of difference in how I feel, healthwise. If it continues, I might actually get through this.

Wednesday afternoon, life started to get stressful again as we needed some supplies from the grocery store before the next snowfall hit, and the car wouldn't start. When it gets very cold, the battery on my car just doesn't like it and Eric couldn't get it to turn over. He hadn't put the battery tender on because he hadn't thought we'd need it. I called a neighbor friend who rushed over and took Eric to the store before the snow hit, THANK YOU SARA, and we got the needed supplies, thus saving me a lot of pain and suffering.

I had been a bit worried about Eric's mental state for awhile, but I started to really be concerned after this incident. He's not a trained caregiver. This has been dumped on him fairly unexpectedly. He's working. And while the nurses in the hospital had a ton of experience and could practically read my mind, he doesn't know what sick-Laura needs. So, please continue to spare a thought for him as he works out how to live and survive on this difficult road.

Full Kidney Saga

Friday, February 07, 2020

Kidney Saga part 13

Monday morning started a long string of days that felt all the same. I had a blood test, ate foods I probably should not have, watched Doctor Who, and generally felt ok. It snowed in the evening, but we'd sorted out the medication issue and had some good safe foods. Inkwell was monitoring me closely, which was funny to watch and kind of pleasant. He's like a nurse without the constant BP cuff on my arm.

I looked up lupus and found the "symbol" for it is a purple butterfly. As I am a fan of purple, and I don't mind butterflies, so I mentioned on Facebook that I needed to find a pin or something to wear to indicate my issue while I'm using a cane or wheelchair. Shortly after, an amazing package arrived from a friend with a necklace, earrings, pins and other purple butterflies. It was really touching.

I also started getting a lot of premature lupus advice on Facebook, which was informative but not truly helpful quite yet. The kidneys are the real issue, and until they are healed, nothing else actually makes a big difference. If I end up on dialysis, the lupus isn't going to be my primary concern... although the lupus is causing the kidney problem. So I just have to concentrate on taking medicines that kill my immune system while trying not to get sicker. Easy.

Fortunately, I have a cat who reminds me to pee and a husband who is feeding and watering me properly and making sure I take my meds. Between the two, I will hopefully be ok until I can start my lupus adventure.

Tuesday morning I read the label on the foul-tasting medicine that I have dubbed "Satan Spit" that prevents me from getting pneumonia. It claimed to be "tutti-frutti" flavored. It's so bad I have to drink a tiny can of Dr Pepper after taking it to get the horrible taste out of my mouth. I literally have to brace myself to take the stuff.

I also got some "get well" cards on Tuesday, which was appreciated. I was tired and resting when Eric brought them in and read them to me.

I also started to obsess about the "magic cup" they gave me at the hospital. It's an ice cream/pudding designed to be high protein for patients who need proper nutrition but can't seem to get it. The orange cream version in the hospital was kidney-friendly and tasted good. But if I got them, I'd have to buy a case of 48, and I didn't think I'd need that many. Ha.

Full Kidney Saga

Thursday, February 06, 2020

Kidney Saga part 12

I woke up early on Saturday. I know this because I posted about some of the new restrictions my medication was putting me on. Like avoiding garlic and sunlight. I thought it was lupus, not vampirism.

I was told before 10am that the blood test was good and I would be going home, but it was hours before all the medications came in and all the instructions were gone over, and even then we missed a medicine due to a misunderstanding of what I'd already been taking. I had a giant bag of prescriptions to take, and hubby-Eric carefully gathered up everything else. On the nurses' instructions, I took every item that was likely to be thrown away for sanitary purposes, including the remaining puddings that helped me swallow the large pills. I got home just before 6pm.

The drive home was weird. My eyes are completely wonky, which is a technical term for "not seeing clearly" and I would see lights multiplied by about six until we got right up on top of them. That included roadside reflectors. So I would see this snowflake pattern alongside the road and folded into itself as we got closer. It was a fascinating and scary visual trick. The road signs for businesses were like giant Christmas trees in the air. It kept me oddly entertained.

Once home, it was take a billion pills then go to bed. What a relief to sleep in my own bed! But also, a little painful. I was now used to sleeping a particular way due to the way hospital beds are set up, and so after eight nights I was adjusted to that. When I turned in my sleep, I woke myself up.

However, without nurses coming in to take my vitals every few hours and without a lifeflight swinging by my window and without all the beeping and monitoring, I think I more than made up for the wakefulness of being able to move in bed.

Sunday was spent figuring out the next steps, including what kind of foods I can safely eat while the kidneys mend. The kidney specialist said it would be months before I feel better, assuming best-case scenerio. And the fluid restriction would be on until the swelling (edema) goes down.

Inkwell reacted cautiously to me. He could tell something was very very wrong with me, and every time he gave me a sniff he'd give a questioning "mrrow?" But he also watched me closely, following me stealthily went I went to the toilet. He swatted at my ankle once, then seemed to realize that wasn't a good idea and gave the closest thing I've seen to an apology from a cat. He sort of hunched and sighed.

It was a good first day home, I guess. I rested most of the time while Eric got everything set up for me. And so to bed...

Full Kidney Saga

Wednesday, February 05, 2020

Kidney Saga part 11

I woke up Thursday afternoon to a slight commotion with Sweary Man, in which my scattered dreams thought he might have made a run for it. Then I slept again, and when I next woke up I heard there was a large male nurse caring for him who had also managed to get the medicine into him. So it was a much calmer afternoon than morning.

The main doctor on my case came in the evening to let me know I was likely to stay another day. She said Friday, the next day, would be the earliest possible day I could go home, but it would depend on the specialists and what my blood draw in the morning showed.

I was still completely wiped from the stress test, and didn't have much trouble sleeping that night. Being able to eat and drink helped a lot, too. Strange how that works.

Friday morning I was still very tired, even after a decent night of sleep only interrupted by nurses taking vital signs every four hours. I kept looking at my arms and all the bruises from blood draws, and hoping they wouldn't take forever to heal. I was definitely running out of places to get blood from.

Sweary Man woke up at about 8:30am and started shouting indistinctly. At first he said nothing crude, then went back to form. I heard "stupid wimmin!" repeatedly. Then I heard the male nurse from before talking with him, and while Sweary Man was still loud enough to hear, he was considerably calmer. He talked about the war, I'm not sure which war, but I think it must have been Vietnam. I think he was mentally there, not in this century or continent. I truly think he thought he was still in the war and was scared and trying to protect the people around him but unable to do so because he was helpless and sick. It made some of his comments about the nurses make a little more sense - if he thought they were putting themselves in danger for him he wanted them away.

Again, I don't think he'd want my pity. But it's a shame what we've done to that entire generation of men. And sadly, generations before and after.

My blood draw came back with a downturn in kidney functions, so the specialist decided to hold me in the hospital for one more day. I ended up sleeping pretty much the entire day. The stress test really took a lot out of me. By evening the fluid restriction was getting genuinely painful. The nurses gave me small ice cubes to suck on to help with the thirst.

And so to bed...

Full Kidney Saga

Tuesday, February 04, 2020

Kidney Saga part 10

I was told the stress test would happen Thursday morning. Turns out "morning" is a relative term in hospitals. While I had my usual blood draw at 6am, I couldn't eat or drink anything except the pills. I was taking my pills with a cup of pudding, since I have difficulty swallowing pills with just water. So I had just a little something. But not enough.

The stress test "started" at 10am when a tech came to put some tracer in my IV. Because the tracer is slightly radioactive, he checked the IV first and said it was leaking. I had to get another IV started before I could get the first step done, so that delayed the entire procedure by about an hour. Because my arms were so swollen, they had to use an ultrasound to get the IV in, which was interesting to watch but kind of worrisome for me.

In the meantime, there was a commotion down the hallway. I could hear it clearly even with the door completely closed. It started with a scream, then the voice of an older man yelling. Loudly. Very loudly. With lots of interesting words that you don't want children to hear and repeat. Lots of words. Some I haven't heard for a long time. Some I'd never heard in those particular combinations. Some I felt like I ought to write down for later reference because of the sheer creativity of them. At first it annoyed me, then it kept me entertained while I waited for the stress test to happen.

Sweary Man, as I mentally referred to him, was loud and abusive and hated the nurses with a passion. I thought he must have been a sailor or infantryman at some point in his life. As I listened, security was called. There are signs all over the hospital about how abuse of the staff is not tolerated, so I wasn't surprised. I heard him yelling about a blood draw and could hear a LOT of people trying to talk with him. He used the f-word a lot, and called the nurses the b-word. He made the word "woman" sound like the dirtiest thing a person could say.

I heard him throw something, then "get out of here!" bellowed loudly. Then he just started yelling "Go!" over and over. He also called a nurse a dumb-f**ing cow. Then damned her to hell. As I noted on Facebook at the time, it kept my mind off how hungry I was. I also resolved to be extra nice to all the nurses for the rest of the day. Not that I wasn't already as nice as I could manage.

Security finally arrived, and he calmed for a few minutes before ranting again. By this time I was feeling sorry for him because I realized he was terrified. You could hear the terror in his voice. I think he was a very strong person at some point, and didn't like the helplessness and had no way of expressing it except by being rude, crude and angry. I doubt he would want my pity, but he had my sympathy.

In my own world, the new IV was finally put in, and the tracer was successfully introduced to my system. At that point, I had to wait for it to go through my body. The tech gave me some water, at least, which was a huge relief. Turns out, a lot of the test was waiting for that tracer to get around. I was still in my room when Sweary Man woke up just before noon. I talked with one nurse, who rolled her eyes and just said he was in a lot of pain.

About noon they took me to the big machine, which was some sort of camera I think, and I got imaged all over. They gave me some sort of drug that made everything seem really odd and strange, then I was exhausted. They fed me a little carton of Boost to keep me awake long enough for the test to finish, then put me back in my room where I promptly fell asleep for several hours, but not until I'd had a meal, thank goodness. I apparently fell asleep before I finished everything. It took a lot out of me and I didn't even go on a treadmill.

Full Kidney Saga

Monday, February 03, 2020

Kidney Saga part 9

Wednesday afternoon the final and definitive results from my kidney biopsy arrived from UW. There was no longer any question. It is lupus. The kidney doctor and I discussed the medications I'd researched and then decided on the aggressive plan of attack. The medicines I would be taking would basically turn off my immune system, which was attacking my kidneys, long enough for the kidneys to recover. Then ... well, then it depended entirely on how my body reacted.

Having had a full day to research lupus and kidneys, and to absorb the news, I didn't feel a lot of reaction to the news. It's strange. I always assumed diabetes would be my demon. Lupus is new and scary, but not as scary as I would have thought it was going to be if you'd told me about this five years ago.

I know people with lupus who have managed to keep it in remission. It's not really all that uncommon, even. It is not an automatic death sentence. Scary, annoying, stressful and, yes, dangerous. But lots of people with lupus live very long and productive, happy lives. It all depends on so many different factors. So I didn't feel much of anything once I knew. The point was that I knew. For sure. This is what was happening, and this will dictate large portions of my life from here on out.

Of course, in order to survive the lupus, first I've got to survive the kidneys.

The lifeflight helicopter landed again, just past my window, around 2pm. I said a little prayer for whoever was on it. I heard it a handful of times during my stay in the room. Because it always landed in a pattern that took it past the window, it was very loud for a few moments when it came down.

At about 5pm I learned that Yakima was losing a hospital - the same hospital system that is linked to the one in my hometown that I decided NOT to go to, because I knew it was in bankruptcy (and I've had negative experiences there before). While it might not have affected my stay had I gone to it, the chances are very good I would have had a lot of issues with follow-up and such. The news definitely made me feel like I'd made the right choice in which Emergency Room to rush to on Friday morning.

I was also feeling a little melancholy, and started wishing I had another certain song on my playlist (but I don't have a copy of it on my phone):

Later in the evening, the nurse saw that I was still a bit hyper and emotional and suggested a walk. We attempted to reach the Pokestop, but it was just a little too far. On the walk I explained Pokemon Go to her, and why I'd taken it up (for the exercise) and how I hoped it would help me recover. She was amused at me catching a Pokemon while we walked. She said it seemed like a good way to get people up and going. I agreed.

And so to bed...

Full Kidney Saga

Sunday, February 02, 2020

Kidney Saga part 8

After a pretty full Tuesday, I fell asleep about 7pm and woke at 9pm when a lifeflight helicopter landed right past my fourth story window. The night nurse came in just after to deliver my nightly medicines. Then I fell asleep again and didn't wake up for a full nine hours. The morning nurse said I responded to the nurses doing vitals, but I didn't remember any of it. I just adjusted and slept right through. I felt so good in the morning, because I haven't slept well in months. Who would have thought a night in the hospital would be better than many at home?

Wednesday morning, the main doctor visited and let me know I would have the stress test on Thursday, and I would be in the hospital at least another day after that.

I was almost hyper after a good night's sleep, but managed to play around on my phone for quite some time, setting up a couple of playlists on my music app and playing games until I was sick of them. My main hospital playlist included: I Will Survive by Gloria Gaynor, Take Me Home by Phil Collins, Don't Nobody Bring Me No Bad News from The Wiz and All I Need Is A Miracle from Mike and the Mechanics. Just some good titles, I thought. The other playlist was instrumentals I could use to drown out noise from the hallway.

The nurses asked if I wanted a shower, and I immediately agreed, but I had to have an IV drip first, which was going to take a couple of hours. They set up the bathroom, but I had a long wait that included a quick visit from my sister. One of the nurses later told me she saw my sister walking down the hall and did a double-take, thinking it was me.

The internet at the hospital was pretty flakey, to the point where I sometimes would only get about five minutes of online time before it logged me out and I had to relog. Because of that, I didn't bother asking Eric to bring my laptop. If I had, I might have attempted to do some gaming on Wednesday, as that good night's sleep meant I was feeling almost "normal".

Of course, normality doesn't last. When I finally took my shower, I was surprised at how much energy it took. I was really exhausted after getting out, and had to rest. It was a surprise to me. I tend to do things when I feel well and ignore the potential consequences just because I'm so determined to actually get things done. But usually I don't feel nearly as wiped as I did after a simple shower in the hospital.

Saturday, February 01, 2020

Kidney Saga part 7

Early in the morning on Tuesday, January 7th, I got moved yet again into my fourth (and final) hospital room. This one was on a busy and heavily monitored floor with lots of nurses and noise. I noted almost immediately that I would prefer the door to be closed when possible because noise bothers me. Sadly, the move put me well out of range of the closest Pokestop, which would make down-time a little more boring, but it was a good little room.

I was told I was going to have my heart checked, and then settled. I was starting to get the feel of the hospital, and was able to order my own breakfast, lunch and dinner that day. The dinner was "homemade lasagna" and was every bit as good as I hoped. I won't be allowed meals like that again for some time, sadly.

At about 11am I got an update from the kidney doctor, who told me the initial screening from UW on my kidneys had come back and it appeared to be lupus. It was not certain yet, but the diagnosis would lead to some decisions, and so he went over the two main medications that I would be looking at and suggested I look them up and decide which one I was more comfortable with. He said neither of them were "good" in the sense that there are a lot of risks and side-effects, but the newer one seemed to work better in women.

So I used my phone and the flakey internet at the hospital and looked them up. And looked them up and looked them up. And read reviews and side effects and effectiveness. And decided on the newer medicine after a lot of reading. Well, it kept me from being too bored, I guess.

I didn't intend to announce the diagnosis because it wasn't yet confirmed, but hubby-Eric put it up on his Facebook almost immediately. I asked him to take it down, but lots of people commented, including some "It's never lupus" jokes from House. I tried those on the kidney doctor later, but he was unfamiliar with the show.

I'm going to note: I was supposed to be feeling sore from the kidney biopsy. At this point I still felt NOTHING. Nothing at all. No pain, no soreness. I mostly didn't even notice the bandage. When the tech said it was a good biopsy, he wasn't kidding.

During the day, despite the closed door, I could hear singing in the hallway. I mentioned it to a nurse, who said there was a singer and a therapy dog on the floor. I was missing Inkwell something awful, so asked if they could send the therapy dog to me if possible. I got to meet the pup in the evening. She sat on my lap for a few precious moments, then did some tricks with her handler. It was nice.

Then I got a visit from the cardiologist, who told me I needed a stress test because the earlier tests on my heart showed a significant under-performance. I've heard of stress tests, but assumed they were all done on a treadmill, which wasn't going to be possible. She said they would induce it, not make me run. I started to have minor anxiety about it because, let's face it, the words "stress test" are kind of scary.

And so to bed...

Friday, January 31, 2020

Kidney Saga part 6

After eating, the nurse asked if I wanted a shower. OH YES. I'd been in hospital for more than three days, a shower would be lovely, thanks. After three days of poking, prodding, stickies, ultrasound gel and general craziness, a shower sounded like the best thing in the world. The nurse spent a little time covering various bandages before I got in, but the shower itself was wonderful and felt life-affirming.

After the shower, I got a visit from a doctor who said I'd have to be in the hospital until at least Wednesday, when the results from the biopsy would be back. As it was Monday at that point, I wasn't too put out. I hadn't expected a long stay, but then I hadn't expected any hospital stay. The doctor also told me that the heart problem was almost certainly due to the kidney issue, and that I don't have diabetes or even pre-diabetes, which was a slight surprise to me. I kind of assumed I was headed that way, but maybe I can avoid that particular demon.

All showered up and with the news of my longer stay, my mother and sister visited. They came over from the Seattle area to help my hubby-Eric deal with the stress and lend support. It was great to see them. Most of the days in the hospital were spent playing on my phone, since there isn't a lot to do when you are confined to a bed and getting your vitals tested or blood drawn or a new ultrasound every couple of hours. In addition, I could not concentrate on words. I couldn't read or listen to a podcast. It was annoyingly futile to try. So having visitors was great.

Once they left, a nurse set up an IV and introduced me to a new medications that caused some interesting sensations. The first was... a warmth in a place I didn't expect. But since it was a medication that was supposed to stimulate urine production, that made sense. The side-effect that didn't make sense was that it altered my taste buds for about six hours. I couldn't stand to even drink water during that time because it tasted so bad. Still, there are worse things than having bad taste buds.

Night came, I slept. Not well. The nurses were on a four-hour vital check schedule, so I got woken regularly in the night. When I couldn't sleep, I played my phone games. It was about all I could mentally manage.

Thursday, January 30, 2020

Kidney Saga part 5

The morning of January 6th I got my kidney biopsied. Well, it started in the morning, but took a LONG time to finish just because of all the protocols and procedures. The doctor went over the situation and made sure I understood the risks, including internal bleeding. I agreed, because I wanted to know what was wrong with me, but it was a little frightening. I've only had one biopsy before that I remember, and that was invasive and required knocking me out. So I was a bit scared and worried, but I wanted to know.

The biopsy was not what I expected. They took me to a CT scanner room and first checked my sinuses since I'd noted they were stuffed up or something since early November. Then they put a nasal thingy on my face and had me lay face-down on the scanner. A nurse put something on my back, talking about a grid as she did it, so I assume it was some sort of temporary grid marking. Then they put me in the scanner and told me to relax as best I could.

As an aside, I'm going to note that I was getting really hungry by this time. I started to think about it, and realized I hadn't had anything to eat in more than 24 hours and nothing to drink in more than 10 hours. I was feeling grumpy and scared.

Anyway, once in the scanner they started calling out numbers and a male technician said something like, "that's the route" and they gently pulled me out of the scanner. Then the tech and nurse hovered over my back for a couple of minutes. I felt nothing at all. I didn't even feel a touch. But apparently the tech-specialist was using a needle to do a core sample, drilling down through my back to my kidneys to extract three samples to send to the lab. The online chart has a description of the needle and the specific painkillers they used to numb my back, but I felt NOTHING at all.

When he finished, the technician said I would be sore when the painkillers wore off, but he thought it had been a pretty clean biopsy and I would only have minor pain. The samples were headed to the University of Washington to be analyzed. So that was me all over.

I was taken back to my room, where I told the nurse about my lack of food. She quickly ordered a meal for me, and I haven't eaten with such verve in a long time. The nurse then explained the food protocol at KADLEC, which involves the patient ordering off a menu instead of someone making all the decisions for me. I kept the menu, as it has a list of kidney-friendly meals on it, and it reminds me of my talks with the nutritionists when I ordered meals. Also, hospitals throw out everything in a room once a patient has left, for sanitary purposes, so the menu would have just been trashed.

Wednesday, January 29, 2020

Kidney Saga part 4

I ended up not sleeping long on the night of the fourth/fifth. I was woken at 1am by a swarm of people entering my room and disconnecting my bed from the outlets and stuff (and yeah, I had my phone charger by then and it was disconnected too) and suddenly I was being whisked - in the bed - down the hall. The nurses explained they had an isolation case coming in and needed the room for that person. It was very early in the morning and I was very not awake, but I had no problem with it.

I was put in a room with another person, and to my surprise, even though it was 1am, the television was on. I was still drowsy and confused, and it took them awhile to settle me down. One of the nurses accidentally spilled a little water on my night mask, so they grabbed me a fresh one and some ear plugs. The woman watching tv waited until there was a quiet moment and asked if I wanted the television off. I said yes.

I don't watch a lot of TV anymore. I tend to watch specific shows and sometimes have to be coerced into even doing that. Eric and I generally watch one show with dinner every night, or I probably wouldn't watch it at all. But a lot of people enjoy having the tube on whenever they can. It's a comfort. My parents tend to leave the television on. I'm cool with it. I just prefer not to be in the room with it if I can help it. As morning rolled round, my roommate turned on the TV again and I suspected I would be listening to all the football games all day long. I decided to grin and bear it.

But it didn't happen, as the doctors concerned about my kidneys won the argument, and decided to send me to KADLEC in Richland, the larger regional hospital that could do a proper biopsy and determine what was really wrong with me. By 11am arrangements had been made. My roommate, who was in because her knee replacement had broken, said good-bye as two EMTS got me strapped to a stretcher and wheeled me out to an ambulance.

I used to think of an ambulance as a mini-hospital on wheels. It's not. It's a tin shed strapped to a truck that can go at high speeds. There are lots of shelves and seating and such, but it's still just a shed. And it rattles a lot on the freeway. The EMTs made sure to pack a bunch of hot blankets around me before we left, which helped, but it was still getting pretty cold by the time we reached Richland and the big hospital. I was wheeled up to a large solo room with a spectacular view and, happily for my boredom, access to a Pokestop.

The staff set me up, and I had more tests run, including an ultrasound no one told me about. One thing that happened that I didn't realize until later was that everyone forgot I needed food. I hadn't had lunch at Prosser, and no one brought dinner because the food protocols at KADLEC were different. Then, after dinnertime, I was supposed to fast for the biopsy. I didn't realize what was happening at the time because the meals at Prosser had been so big I wasn't hungry. That would change.

Tuesday, January 28, 2020

Kidney Saga part 3

Once in my room, the staff asked if I had eaten anything. I hadn't - we'd booked it to the hospital as soon as the doctor told us to go. So they brought me a lunch, a giant salad. I realized hubby-Eric was not going to be helpful at this point, and perhaps would just spend too much time worrying. Since I knew I was in for at least one night, I sent him home.

The doctors came and went, a catheter was put in for convenience (after they consulted with me about possible risks) and I was poked and prodded and tested up to my neck. The doctors at Prosser were far more concerned with my heart than my kidneys, and declared I had Congestive Heart Failure. I had always assumed that heart failure was just that, complete stoppage. Death. Well, it's not. It's just a scary way of saying my heart isn't working right.

My lifeline to the world was my phone, which allowed me to get on Facebook and ask if I could be called a zombie now that I was dead from heart failure. I got some amusing responses that cheered me up, and enjoyed the good wishes and banter from people. I remember being in the hospital as a teenager for appendicitis and feeling so lonely and isolated. This time with the connection to everyone I felt much safer and happy. My only concern at that point was getting a charger before my power ran out.

My time was spent trying to sleep, getting my vitals checked, and being tested. I learned what a heart ultrasound feels like, and it feels surprisingly like Inkwell's recent purr therapies. I think the cat was trying to warn me that there was something wrong with my heart. The doctors at Prosser seemed conflicted. One was convinced it was just my heart, but the others were certain my kidneys were involved and wanted a biopsy. They told me I couldn't have that done at Prosser and would have to go to the larger regional hospital in the Tri-Cities, if it became needed.

The food at Prosser was incredible. I had been craving some good French Toast for ages, and guess what they served me for breakfast? I've also had a strong desire for a decent egg salad sandwich, so much so that I had been recently looking up recipes to try to make my own, and boom! Guess what they served me for lunch? And the servings were nice and large. I wonder how they knew?

Ah, catheters... I won't tell you how teenage me dealt with mine, since I'm still embarrassed about it (but, to be fair, I was very drugged at the time). Adult me took it in stride. Even when they told me they needed 24 hours of urine and so they put the bag on ice. It was... odd. I had some trouble relaxing, so I started singing "Let it Go" to myself when I felt like I was tensing too much. I doubt it did anything physical, but it made me feel a little more in control.

A night nurse came in on the fourth and took a look at my left hand and said, "We need to get your wedding ring off." She had seen some very bad instances of swelling and one instance of a lost finger to a ring. She said she only had to cut a wedding ring once, "It was heart-breaking, but better than losing the finger." It took nearly an hour to get the ring off. Lots of turning and lotions and careful pulling to not cause more damage. I was very relieved when it was off. Then came the question of where to put it safely. I use Chums on my glasses because I have a tendency to take my glasses off and set them down and lose them, so having a leash is useful. I suggested putting the ring on the Chums line, and that kept it safe until I got it home.

And then I slept, feeling safe and secure, if swollen and a little frightened of the future of my heart.