Saturday, March 28, 2020

Kidney Saga part 53

I was expecting yesterday morning that today's update would be about how relaxing and calm Friday was, and how I slept through the day. Unfortunately, it did not turn out that way.

About 10am I started to feel a tightness in my chest. As I've been a little worried about some shortness of breath I've had recently (which I had already contacted the doctor about) I was primed to pay attention to it. It got worse. Then started to hurt. I wondered if it was just indigestion, but it kept getting worse. I finally decided to use the only tool I have to test my heart, and took my blood pressure. It was 95/60, which is as low as I've seen it since I started taking it. I had no clue if that meant anything (it doesn't).

I asked Eric to look up "symptoms of heart attack in women" as I took my BP a second time. After going through the lists of symptoms and not being sure, I called my primary care provider to talk with a nurse. By now the pain was intensifying, and she said in my condition it was better to go to the emergency room to make sure I was safe. So Eric and I headed down the stairs. At the door to the garage I asked Eric to grab something for me, then I stood there for a moment and everything went white. It was like I'd passed out, but Eric said I was lucid and made it to the car myself. But I don't remember getting into the car.

I remember Eric telling me to wake up. I remember trying to look out the car and everything was so bright it hurt. The pain in my chest kept getting worse and worse. Eric kept talking to me, then I have a vague notion of being in the hospital and people talking at me and asking questions. I don't know how much I answered. There were a lot of people there. Everyone was telling me to breathe, but I couldn't.

Then, suddenly, all the pain just stopped. I couldn't feel anything below my shoulders. I think I said that, and someone said I was stable. Slowly feeling came back. My arms first - I felt the IV. Then my feet and lower legs. Then the rest, bit by bit. I believe I was crying most of the time. I was terrified. The nurses were trying to get me to breathe slowly.

Finally, everything was calm, I was in yet another hospital bed. Eric was allowed in, and I slowly recovered my senses. They did a couple of blood tests, an EKG and an x-ray to make sure my heart wasn't busted. As it turns out, my heart is doing just fine, thank you.

So what happened? The doctor on-call wasn't entirely sure. It could have been something in the esophagus, which is in the same area, exacerbated by a full-on panic attack. I could have pulled a muscle somehow, which might explain why my chest still feels very tight this morning.

I will have a follow-up with my cardiologist, but this might turn out to just be one of those human body mysteries. I got severe chest pains, but we aren't sure why.

After maybe 5 or so hours, Eric and I were released from the hospital and got home to a very upset Dr. Inkwell. I was happy to make it up the stairs with minimal help from Eric, which may mean I can start using the stairs again soon, and maybe, just maybe, get to the point where I can cook for myself. I really want to bake something, but I'm going to have to find some diabetic/kidney friendly baking projects.

This morning my feet are completely free of dropsy, so I am very nearly drained of all excess water. Now I need some nice ankle socks, preferably with grips, to keep my feet warm and protected.

So, a bit of unwanted excitement yesterday. It hasn't kept me down: I managed a shower already this morning. Hopefully today will be completely uneventful!

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Friday, March 27, 2020

Kidney Saga part 52

"Is it a symptom, or is it just normal tiredness?"

I keep asking myself that question. I'm sure it's just normal tiredness. After all, I'm not healthy right now. But I am second-guessing every reaction my body has, trying to make sure I don't end up in the hospital again.

I woke up on Tuesday, Mar 24th, with back pain. The old familiar back pain that I've had many times before. I grumbled a bit, and am moving very slowly from it, but overall it was tolerable. At times it hurt like a demon is clawing me, but it settled after the morning and I was able to stand it.

Last summer, a million years ago, when Eric and I went to the Oz Convention, my back started to hurt again. At the convention, a person offered me some cream that was half CBD/ half THC. To my immense surprise, the stuff actually worked. However, I have no idea what kind of reaction it would have with my current meds, so I should not take it. But if the pain gets bad enough... maybe.

Tuesday morning I ended up staying in bed for a couple of extra hours. I played games on my phone and got a very thorough cat scan done by Dr. Inkwell, who "talked" to me throughout. I wish I knew what he was trying to tell me.


The rest of the day was surprisingly relaxing as well. I got some video gaming in, and managed to mostly relax, although every time I checked the news I found myself falling into a deep dark place. So I limited what I read and then went back to gaming. Killing pixels makes everything better.

Wednesday, Mar 25th, I had an appointment at the Grandview clinic scheduled with my Primary Care Provider (regular doctor) but the clinic called and said with my conditions they really didn't want me exposed to anything there. So instead of me coming in, they asked if I was OK to do a phone consult. Uh, sure? Video conferencing isn't available yet, and may not be with my local clinic. I know KADLEC and Prosser both mentioned getting their systems on-line as soon as possible.

The interview went well, with my PCP deciding that she's in charge of my diabetes and its prescriptions. I also asked to have my depression med refilled. She went over some details about diabetes that I didn't know yet, and was impressed with my report that I've been in a very stable range when testing since I got out of the hospital. Overall, a good visit even though I didn't get to deliver chocolates to the nurse who helped me.

I also got a call from the Sunnyside Hospital, which surprised me immensely since we'd received a note from our insurers that they wouldn't pay for any services from the company, Astria, that runs it. But apparently KADLEC sent a referral for an visiting nurse, if I need it, and Astria ran my insurance and they OK'ed it. Still, I'm doing fine at the moment and I really want to limit any contact with the outside world, so I declined the offer. I was told it will be a standing offer deal; if I need it I can ask and get it.

I also attempted to schedule my next infusion of cytoxan, but got the runaround. I ended up contacting the nurse at the kidney doctor's office for help, and she said she'd try to do it and let me know. I'm not sure what's happening there.

Thursday I woke up with massive back pain that faded as the day went by. This is normal for my back pain, so it's following familiar patterns. I have been trying to keep moving, as that often helps, but Thursday was definitely a "relax and do nothing" sort of day. I got some writing in, killed some pixels, played with Inkwell: the usual. It was a slow day.

Inkwell is getting a bit of cabin fever, and has been running around the house at full speed vocalizing. He also keeps trying to get at my food during meals.

I had a small bout of insomnia early this morning, with a bout of existential dread. But we have very little planned for today except Eric is planning on a grocery run and I will be worried about it.

And so, I'm caught up to today. Let's hope I don't end up in a hospital and get behind again.

Full Kidney Saga --- Kidney Wish List --- GoFundMe

Thursday, March 26, 2020

Kidney Saga part 51

My weekend was relatively fantastic. I had enough energy to play my video game, I got to chase Inkwell with the walker, I learned how to do walker squats, and generally had a good two days. I also started to establish a routine. Go to bed at 9pm. Wake up around 5 and weigh myself. Meals evenly spaced so my blood sugar stays stable. Try to figure out snacks that keep me from overeating or overdrinking.

On Sunday, Mar 22nd, I looked at my weight chart and realized I'd lost exactly 52 pounds from Feb 22nd. It was a bit overwhelming to think about. Most of my extra weight over the last few months has apparently been water-weight. The technical term for the condition is Anasarca and I had a fairly bad case of it. What's even scarier is that I'm not quite down to a normal weight, and still have water to lose. The cardiologist showed me how I can tell (you press skin, in the legs mostly, and if your print remains for a few moments there's a problem there).

I think I just barely have a handle on the diabetes stuff. I still have a lot of trouble doing it, but I know what to do. My biggest fears are the costs involved. The testing strips alone are insanely overpriced. I knew diabetics were being tormented and killed by the "health care system" but I didn't realize just how bad it was until I was thrown head-first into it.

Dr. Inkwell has been performing regular cat scans on me, and now is sleeping next to me most nights (since poor Eric is still exiled to the guest room). When Inky sees me lie down he gets on my chest and meowsages me while purring loudly. Sometimes he just settles on my chest after awhile and purrs. It's lovely.

The blood draw on Monday, Mar 23rd, was painless. Well, painless for me now. I have adjusted to needles to an extent, although I still can't look when they do the insert.

The hospital was mostly business as usual, although Prosser is limited to a single visitor (unlike KADLEC, they haven't blocked all visiting). All the interior security doors were shut, but not locked, which was new. It made the corridors seem much smaller. There were fewer people, no doubt due to the visitor policy. Eric and I drove straight out to the hospital, checked in, went to the lab, got my work done, then drove straight home. We are definitely self-isolating as much as possible.

With the shelter-in-place order from the county health district (more of a request than an order, really, due to the lack of enforcement authority) we are more than happy to stay home as much as humanly possible.

Sadly, once I got home from the lab, I still needed a lot of Eric's help to get up the stairs. I am looking forward to the day I can move up and down the stairs freely again.

I was very tired on Monday night, no surprise. I had a shower that morning, which actually took a lot of energy despite me using the shower chair. When going to the toilet and showering are major tasks, life is very hard. You just don't appreciate health until it is taken away from you. I also went out, so the fact that I was tired should not be surprising. I nearly fell asleep during dinner, and right after dinner, well before my 9pm bedtime, I ended up in bed resting.

As I needed to take insulin at 9pm, I set my alarm, and good thing I did because I was fully out of it when the alarm went off. It took me a little longer than usual to remember how to poke myself.

To be continued...

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Wednesday, March 25, 2020

Kidney Saga part 50

Life is never easy, and St. Patrick's Day 2020 was not an easy day. Eric managed to get a glucose monitor, but it didn't work. It just didn't work. And it was too late in the day to call the support number to find out why it didn't work. So I was in frustrated tears much of the evening, sitting on the floor, trying to sort out my medications.

I slept on the couch, and slept fairly soundly for all that had happened. After being in the hospital, a quiet couch with a cat silently guarding you is practically heaven.

In order to solve the glucose monitor problem, Eric took me to Rite-Aid to talk with the pharmacist there. He was a pro, and managed to find one that worked. Turns out my blood count was low... due to the cytoxan. The cheaper monitor couldn't detect it. As this is going to be an ongoing problem with me taking six doses of cytoxan over the next 12 weeks (if all goes to plan), I suppose we're stuck with the more expensive model.

After getting home, I started looking at meal planning, and having a horrible time with it as usual. I wanted to get online and look for sample menus, but I was afraid I couldn't make it upstairs. Finally I sort of cracked and begged Eric to help me up the stairs. It was not easy, but we made it, and my relief was extreme. My own bed, a shower, equipment to help me get up from the toilet - ah, so much better!

And access to my laptop, which allowed me to start looking at options for food. Yeah, I got a little food obsessed. They fed me well at the hospital, but I need to eat healthy in order to get healthy, so I needed some guidance. With the situation as it is, getting a me dietitian isn't going to be the highest priority of the health system.

Inkwell was happy once I got into my own bed. He gave me plenty of purr therapy, even insisting on climbing on me almost before I could pull covers over me. At times he would stay on my chest for quite some time, just purring. He clearly wanted to heal me.

Inkwell was also more than a little spooked by the walker. He wasn't sure why I was using it, and seemed more than a little worried about it attacking him. Although other times he looked like he wanted to just play with it. He swatted at it a couple of times, but seemed to realize that wasn't safe for me, so stopped.

On the 19th I had a follow-up appointment with the cardiologist, who was stunned at my weight loss and told me about losing 13 liters of water weight just in the catheter while at the hospital. She said the hospital itself did not weigh me at all while I was there. It was not a stat they included on my vitals. She was a bit peeved at the hospital for pushing me out so quickly, but overall, the appointment was quick. She said she would try to set up a "phone visit" with a dietitian, but things were a bit chaotic. She said they would eventually be moving to video conferences, but it was taking time to set up.

On Friday, March 20th, I pretty much fell apart. I counted the diabetes supplies and realized I would run out the next day of syringes for the short-acting insulin and pens for the long-acting insulin. So I called the pharmacy and learned the insurance was holding up the pens. I called the insurance and they told me to call my primary care provider. At the same time, I was having massive mood swings and crying jags, which made it very hard to talk to various people. The nurse at my PCP was very calming, and took heroic efforts to get me pens instead of syringes for the long-acting insulin. I owe her a lot. In retrospect, I think I could have managed the syringes, but I was so scared and confused that I was practically hysterical in the classic sense.

We did manage to get both pens and syringes, so I am able to treat myself for the disease. But for awhile it seemed like it wasnt going to happen. The system is not kind nor fair to diabetics.

To be continued...

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Tuesday, March 24, 2020

Kidney Saga part 49

On Tuesday, St. Patrick's Day, I woke to the news that my test had come back and I would probably get my first dose of cytoxan that day. Shortly after I was informed that no visitors were allowed into the hospital starting that day.

I spent the rest of the morning, into the afternoon, in a "will it happen or won't it?" state, as the nurse had no new information for a long time. I did some physical therapy, walking farther than I had before and using the step to practice for the stairs at home. I noticed a lot of empty rooms on the floor as I walked.

Finally the nurse came into the room at 2pm and said it was time to start my treatment. He brought in what looked like a full hazmat suit, and the doctor walked in to supervise. That was when I learned that cytoxan is technically a chemo drug, although the treatment I am getting is lower dose than for cancers.

The infusion went through an IV that had taken four attempts to get into my hand two nights previous. The IV they put in when I first got to the hospital had "gone bad" and was causing me a lot of pain, so they'd pulled it and because of all the blood draws and everything, and the fact that I have very shy veins, it took a lot of work to find a spot for it. The total infusion took roughly 45 minutes.


The head nurse stopped by, and asked if I was ready to leave. I explained that I really really needed to see someone about the diabetes protocol because I was not at all sure what I needed or needed to do. She said she'd get on it. But it wasn't until the hospitalist responsible for discharges talked to me a bit after the infusion that someone came to help me. The hospitalist was determined to get me out that night.

I have never in my life paid more attention to a lesson than the lesson the diabetes specialist explained to me. They gave me all the leftover diabetes stuff they had available, which was enough to last until the end of the week.

Literally the moment the lesson was finished, the hospitalist came in and authorized my discharge. I called Eric, the nurse went off to do the paperwork and I wandered around the room with the walker collecting what things I had left and anything I could make off with that would be thrown away anyway.

Once Eric arrived, I had a rapid trip in a wheelchair down to the entrance, and was loaded into our car. I want to say that at this point I was starting to really feel tired. Not just tired, but BONE-TIRED. I felt deflated. I felt like I wasn't a person any more, just a thing. While I was happy to be leaving the hospital, I felt rushed and panicked, and my stress was high, but I was so, so very tired. It occurred to me later that it was the chemo infusion, but at the time I was just confused and felt horrible.

Eric got me home in good time, but my judgment was awful. While he ran into the house to put the walker together for me, I decided, stupidly, to try to use my cane to walk into the house. When I got to the step from the garage to the utility room I thought, "Oh, I did this easily this morning, I should be able to do it fine now!" and took the step. And immediately my legs buckled out from under me and I fell.

I fell in such a way that I did not hurt myself, which was a great relief. But of course, I couldn't stand back up. So I said some naughty words and crawled into the house while Eric hovered over me in terror and worry.

I spent a very long time on the floor because I simply could not get up. And, honestly, I was so upset at myself for being foolish enough to try the stair without help that I stayed on the floor without attempting to get up longer than I needed to. Eric ran errands, including getting a blood glucose monitor, while I sat on the floor sorting my medications on the coffee table and trying to figure out what life was about to become.

Inkwell investigated me several times as I sat there. He seemed to recognize me at moments, then would pull back. I guess the hospital smells weren't good.

Eventually I did try to get up, and managed with a twist of my body that I'm not sure I could accomplish again to get onto the couch. At that point life was much more straightforward, as I could use the walker to stand and get to the bathroom, which I desperately needed at that point. But there was absolutely no way I could get up the stairs, so I spent the night on the couch. Inkwell spent a good part of the night watching me.

To be continued...

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Monday, March 23, 2020

Kidney Saga part 48

By Monday I was restless and hoping to go home, but still really scared about the diabetes protocol, since I knew I didn't understand it yet.

After they took the catheter out, I was up a lot. Fortunately, my body seemed primed to time my needs to when the nurses needed to take vitals, so I was able to usually just get up when a nurse came in.

Monday was the last day the hospital allowed visitors, and Eric came to see me. He visited me as often as possible during my stay.

I got to see an occupational therapist, who basically checked to make sure I had supplies and equipment at home that would allow me to function. She was quite impressed as I listed off the items I knew were already waiting for me. She was particularly happy that we have a walk-in shower, as teaching people how to deal with a tub shower is apparently very difficult.

The physical therapist was certain I could handle most of the house, but warned me that I needed to be super careful about stairs, and even about single steps. I was to regret not heeding his advice later.

I also got visited by a heart specialist, who made it clear that I don't have to cut sodium out entirely, just reduce it to about 2000mg a day. I was trying very hard to not have any sodium, which isn't all that healthy either.

My day nurse and nursing assistant on Monday were not particularly observant or responsive, so I started going to the toilet without assistance, which was naughty. But I would have had accidents if I hadn't, and with the walker I could manage very easily. I was still very weak when getting up from the toilet, but I could finally lift myself. You don't know helplessness until you are sitting on the loo and cannot get up.

To be continued...

Full Kidney Saga --- Kidney Wish List --- GoFundMe

Sunday, March 22, 2020

Kidney Saga part 47

By Saturday, the 14th, I was feeling much better. My blood sugar levels hit a normal range, then dipped a bit before coming back up. I was gaining strength, and had a couple of nurses who were determined to make sure I could survive at home.

One was a nurse who insisted I learn how to do a basic insulin shot with a syringe. She allowed me to be squeamish only so long before she pretty much forced me to do the shot myself.

The doctors who were deciding my treatment came in again at various points, once a day, and talked very very fast about what should be done about me. They told me on the 15th that there was a required test before the cytoxin treatment (the older, nastier treatment for my kidneys), and said the results would be back in 24-48 hours.

They also finally got me off the catheter, which was extremely nice. I needed the catheter, since 13 liters over a week isn't something you want to be jumping up for every few minutes, and I couldn't actually move when I got to the hospital. But the fewer lines and tangles you have, the better. Especially since I was walking around the room a bit more, and wanted to exercise.

I developed a theory about the fresh pineapple they were serving me. It seemed to kill the thirst. As I am on a severe liquid restriction, I get thirsty. But if I finished a meal with fresh pineapple, it was at least a couple of hours before the thirst came back. I'm not sure why, but I appreciated it in the hospital.

On Saturday I was told I might get out of the hospital as soon as Tuesday. That turned out to be true, but I was not expecting it to happen. Certainly not the way it eventually did happen.

To be continued...

Thanks to a number of factors, my current Kidney Wish List is down to just Hospital Socks. With the remaining bloating already going down, I don't even need those as urgently as I did (although I do still need to get some very soon). Thank you to everyone who helped with my needs. We still need to pay the hospital bill, but the GoFundMe is there for that.

Full Kidney Saga --- Kidney Wish List --- GoFundMe

Saturday, March 21, 2020

Me, in Crisis

Kidney Saga part 46

On the 12th I was doing pretty well, despite some oddness.

I had my first gushing bloody nose that I recall, with blood just dripping down my face. My blood pressure was consistently high, so it wasn't really all that much of a surprise to the nurses, but I was shocked by it.

I had more lessons in using a walker, and more student nurses. But best of all, to me, was the news that my kidney functions were getting better. My blood sugar was slowly easing back into normal ranges, although it was still high.

Sadly, I had a downturn on the 13th, and the doctors came in and talked very very fast to each other in a patter that I barely followed and changed my treatment. Apparently my platelets were decreasing and I was getting sicker. Everything was happening very fast, but I agreed to the decision to go to the older, nastier solution to fixing my kidneys.

In the meantime, I was watching the news on my phone and feeling increasingly terrified for everyone outside the hospital. I felt fairly safe, in the hands of multiple nurses. But I kept reading about my friends going into social isolation and trying to deal with our new reality, and it slowly became a weird nightmare of surreal proportions.

When I went into the hospital on Monday, some of the nurses talked about how the clocks were wrong - they literally hadn't realized Daylight Saving Time had happened. By Friday, most of the nurses had learned about WHO declaring a pandemic and were beginning to get a little concerned about what is about to happen.


At some point, when the nurses left my door open, I figured out that there were a number of cancer patients on the floor. At one point I heard someone screaming in pain, I think it was a man. I wanted to help him, but there was nothing I could do.

On the 14th my blood sugar levels finally reached normal, and I started to be able to think again. It was nice. I also found that I really really like fresh pineapple chunks, which surprised me. I kept requesting them with every meal.

To be continued...

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Friday, March 20, 2020

Kidney Saga part 45

I have a vague memory of hallway ceilings, and then I was shifted to a hospital bed. I remember being terrified because I was tipped and thought I was falling again. I think I may have screamed.

I remember lots of people in the room talking very fast, but not all of them there at once. Masks. Everyone had masks on. I remember being told I had been given so much saline I needed to be given blood. The doctors decided on two units of blood, but I have no recollection of actually getting it. I know it was done, but I was mostly not conscious during the procedure. It did not stablize me.

At some point someone told me the steroids had induced diabetes in me. I believe I responded with a word I usually try not to say.

On the 10th they gave me another unit of blood, which was enough to stop the downturn. I got conscious enough to post on Facebook about my "vampire grape juice" which I vividly remember watching flow into me through the IV. I kept thinking of whoever donated the blood and thanking them in my mind.

By the 11th I was able to lift my hands again, which was my sign that I was getting better. I hadn't realized how incredibly weak I was until I was back in the hospital. I spent the 11th being helped by a student nurse, and for the rest of my stay I had a couple of other students practice on me. I gather I'm a "good" patient.


I learned how to use a walker, and had some seriously aggressive medicine pumped into me that reduced my bloating by... a lot. I lost more than 30 pounds of water weight while in the hospital. I'm told I produced 13 liters. So I was EXTREMELY bloated. I'm still really not able to grasp that number - 30 pounds. Of water. How the heck did I put it on in the first place???

I guess it has to do with the "hydrate hydrate hydrate" advice I was constantly getting. "You feel bad because you don't drink enough water!" so I drank more water. And when I started bloating I didn't stop drinking water because I felt bad. Oops. So aggressive medical action was required to get rid of all the water I drank and retained.

On the 11th, I did have a diabetes lesson, but I was still fairly dazed and confused, and I retained almost nothing from it. This was scary later when the hospitalist wanted to discharge me and I didn't know how to handle the diabetes side of things.

To be continued...

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Thursday, March 19, 2020

Kidney Saga part 44

So, on Monday the 9th of March, Eric took me to the Prosser Hospital to get my lab tests done. We got home, I struggled up the stairs with Eric's help and then we got a phone call to tell us to get to the Emergency Room right away.

If you read my post from the ninth, you might realize what happened. My blood sugar levels were so high I was very nearly in a diabetic coma. I had all the symptoms, but didn't recognize them.

That morning I had dutifully sent a note to my doctors describing in detail all the symptoms I thought were from my main medication, and also told them about my fall. I suspect that note combined with the immediate lab results were what sent me to the hospital.

I don't remember a lot from that day. I remember being confused, and trying to figure out where I was. I thought I was at home, I thought I had died, I thought I was dreaming. There was a doctor at the Prosser Hospital emergency room that, in my memory, looked like an insect. I still can't figure out exactly what I was seeing. They decided I needed to be sent to KADLEC, but weren't sure when that would happen. I heard different things as the evening progressed, then I was suddenly in an ambulance.

In the ambulance, the EMT kept asking me questions to keep me conscious. He started a saline drip at one point, I think. I'm not sure, but I remember the bag above me. I remember being very cold the entire time, but I'd been very cold a lot.

I eventually ended up that night in a hospital bed at KADLEC again, in the oncology ward. I had no idea where I was for quite some time. I tried to update on Facebook with my phone, and I think I managed a couple of very short statuses, but I was too weak to raise my hands or feet.

To be continued...

I have added a couple of items to my Kidney Wish List. I am so thankful to the folks who bought me much-needed supplies. Every thing from the list I've gotten has been used extensively.

I put a table on the list, since I need more room to organize all the medications and diabetes stuff, as well as somewhere to sit and eat. I put the socks on the list because I need foot coverings. The other item is probably self-explanatory. I don't expect anyone to buy these, but it's good to have the wish list to remember what I need since I keep forgetting things.

Full Kidney Saga --- Kidney Wish List --- GoFundMe

Monday, March 09, 2020

Kidney Saga part 43

Nightmares over and over of falling. Every time I wake from a nap, I'm falling. Rage crying, and jags of weeping for no reason.

Trying to stay calm whenever I need to get up and go to the toilet. Not able to center myself most of the time. A serious disconnect from my own body.

Inkwell hovering on my chest purring and trying to keep me calm.

Overwhelming thirst. Need to stay in my fluid restriction, but trying hard to keep my mouth from getting too dry.

Terror of falling. Using the cane to try to stay stable, but still worried all the time. Legs feel like they don't belong to me.

Everything is disjointed. I can't even connect my mind to my words. I'm just going to go back to bed.

Full Kidney Saga --- Kidney Wish List --- GoFundMe

Sunday, March 08, 2020

Kidney Saga part 42

Watching those "I've fallen and I can't get up" commercials way back when were difficult for me, because I have a lot of empathy and seriously got to thinking about those situations and worrying about the folks that would be trapped like that. I didn't actually see myself in the same situation, because I was healthy and being unable to lift myself from a floor was unthinkable.

As a reporter, I read the police and fire department logs for potential stories. The fire department logs are full of "lift assist" calls. Basically people who have fallen and need help getting up. I would say the vast majority of calls were that type. When an ambulance in our town was dispatched, the odds were really good the EMTs were headed out to help someone get up off the floor.

I never thought it would happen to me.

I never thought I would get so weak I literally couldn't get up off the floor.

I never thought I would fall to the floor in the first place.

As I was eating lunch yesterday, I felt a little uncomfortable and tried to adjust myself in my chair. I stood up, and then I was suddenly falling. Hard. I didn't have time to put my hands out in front of me and just slammed into the floor.

I'd known I was weak. The medication uppage had drained me. I didn't realize just how weak I was, though. I didn't realize my legs literally couldn't hold me when I tried to stand up. And now I was on the floor, in pain, with possible injuries. Eric was suddenly there, while I started to cry and gasp. After a few moments we checked to see if my hand was broken, since that hurt the most. Then my thigh - no, I could move it without pain. My knee, no fine. My face was scraped up, Eric got a wet cloth to ease the pain. I managed to turn over and sit and we checked me over. No major injury.


Then I realized I couldn't get up.

I'm very bloated due to the water retention. I weigh far too much for Eric to lift. And I can barely get my legs under me when I'm standing to climb stairs. Suddenly I'm facing a situation where I have to get my legs under me in a way to stand up. It's literally impossible. I don't have the correct type of leverage. So I sat on the floor and thought about it and gathered strength. And felt real, sheer terror. "I've fallen and I can't get up." Even with Eric's help. Was I going to have to call the Fire Department?

Yeah, I cried. The helplessness of the situation is overwhelming. How did I get to this point? What do I do?

Finally I hit upon an answer, although I wasn't sure it would work. Incremental lift. I had Eric push pillows under my knees while I lifted against the chair, until finally he was able to boost me that last couple of inches into the chair. Once in the chair, I was able to stand again with his help. After I finished lunch he got me into bed and now I'm being super careful not to fall again.

But it was a half-hour of horror that will not leave my mind. I was shaking and crying for more than two hours after the fall. Inkwell spent much of that time guarding me, and has spent a great deal of time since on my chest telling me how much he loves me and how much I need to calm the heck down, human. When I think about it too hard I feel like I'm falling again. The scrapes are annoying, and I couldn't sleep well last night. This morning I'm beginning to feel each of the spots that hit the floor first.

The triple-dose is definitely having a major effect on me. The exhaustion is bad, but the dry-mouth is driving me nuts. Added into the new fear of falling that is so desperately terrible - I had a lot of trouble sleeping last night knowing I had to use the bathroom but each trip was a tale of terror - I am not doing well today. I really need access to a walker, I think. I put one on the wish list, but my mom said she's got one I can borrow for a bit. I just need to get it here. I just don't want to fall again.

My alarm went off to take my medicine this morning. It was an hour earlier than yesterday. Daylight Saving Time really needs to end. Just one way or another, end the stupid system. It's a complete waste.

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Saturday, March 07, 2020

Kidney Saga part 41

I started the triple-dose of the main medicine yesterday, and today I'm feeling it. I feel flattened. I had a lot of trouble waking up this morning, and genuinely had difficulty just eating.

It's going to be tough.

Family visited yesterday, but were kind enough to keep at a distance and only visit one at a time. I have so little energy I want to curl up and sleep, but I'm not actually tired, I just can't do things physically. I fear my biggest danger might actually end up being boredom.

Dr. Inkwell continues to monitor me, often from on top of my ankles while I'm trying to sleep. I'm trying to teach him that a cat sleeping next to a human can be as useful as one sleeping on a human, but he's got his concerns, and sleeping on his human is one of them.

I was relieved to hear that Emerald City Comicon postponed the convention. My historian-side kept thinking about the 1918 parade that really boosted the pandemic flu, and just felt so much better when the organizers finally announced the delay yesterday. Now if the pandemic fizzles, they can have the convention in the summer and if the pandemic grows, appropriate measures can be taken later. But at least ECCC won't be the cause of kicking off hundreds or thousands of potential deaths.


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Friday, March 06, 2020

Kidney Saga part 40

Last night I asked Eric to bring up my medications, and we set me up with a table upstairs so I no longer have to go down the stairs twice/three times a day for meals. This change feels a bit like a failure, but on the other hand, I just am too weak at the moment to deal with the stairs so much.

This means I'm kind of restricted to three rooms upstairs now. I don't have a problem with this, but it seems strange. At least Eric figured out a way we can still watch the superhero shows.

I also added an item to my Kidney Wish List because I am having so much trouble just standing up anymore. I am exercising, but the doctors said I will probably need physical therapy as we go forward to get my full functions back. So frustrating, but not much I can do.

So, yeah. At least I know I'm even more isolated and in a fairly solid self-quarantine.

In other news, we got a bill for the biopsy at University of Washington. It is a bit much. I'm not sure insurance has been involved yet, but it's certainly going to be painful if so. I really have no idea how we are going to pay the medical bills.

And lastly, I was amused by this graphic someone put up with a report of another vendor/exhibitor pulling out of Emerald City Comicon. It's just a little too perfect, with all the nonsense and conspiracy theories.


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Thursday, March 05, 2020

Kidney Saga part 39

Someone pointed out that you can sing "Covid-19" to the tune of "Come On, Eileen" and now I can't think of it in any other way. Thanks.

Not much to report on the kidney front, really. I'm still slowly becoming less bloated, which is healing. I'm waiting on the blood test results, which will likely show up in my online chart this evening if the pattern holds true. Tomorrow I start the triple-dose of the main medication, which will eventually lead to tapering off the steroids and then... well, we'll just have to see.

I did some of the sit-to-stand exercises this morning. They completely wore me out. Yup. Gonna take some time to heal.

I am trying to decide whether or not to go full-on isolation by bringing my medications upstairs and avoiding going downstairs at all. I want to keep the exercise, but the stairs are a big challenge for me now. Also, dinnertime is the only social time I'm getting with Eric, as we try to catch up on the superhero shows. But if I get truly concerned, restricting myself to upstairs is a possibility.

Regarding the panic over Covid: it's not the death toll, it's the uncertainty. There's just too much we don't yet know about it. If we knew how many strains there were, and whether or not there is a more deadly strain that made it over from China, and if we knew whether or not the re-infection was on different strains or the same ones (leading to Typhoid Mary situations), or if we knew the actual incubation periods exactly, or... a dozen other facts that just aren't yet clear... if we knew, the fear might go away. But people are dying, and some handful of healthy people have gotten very sick, so we just don't know yet. And until the boundaries are determined, the whole thing will be scary for everyone.

History tells us it's not a good idea to hold a big event when a pandemic is brewing. So I'm still worried for Seattle and Emerald City Comicon. To be completely honest, I expected it to be canceled by either the governor of the state or the mayor of Seattle yesterday. I won't be surprised if it is canceled, although the longer it holds out the more surprised I am.

Of course, I'm hearing wild rumours from the Seattle area, particular the Eastside, of what's actually happening on the ground. I'm not seeing enough official or backed-up reporting to know what's really going on. All I know is that I'm going to stay in isolation as much as possible while this thing is happening and hope I can survive.

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Wednesday, March 04, 2020

Kidney Saga part 38

Another day goes by with nothing much to see or do.

Yesterday was a good rest day in the afternoon, although Inkwell decided to find the sorest spot on my ankles to sleep on most of the evening. He's very cute, and very purry, but sometimes he's a pain. I was able to convince him to sleep next to me last night, so he was able to actually sleep while I jumped up every hour to use the loo.

Still making progress with getting rid of excess bloating, but it's taking so long. I feel like I should be healing faster, but I know this isn't an overnight thing.

Biggest problem right now is that I'm having weakness in my legs that makes it hard to get up from low chairs and toilets, and very difficult to climb stairs. I looked online and found some exercises, and have sent a note to my doctors to ask for advice, but it really is cramping my style to not be able to just get up from a chair or climb the stairs after dinner.

I've gone past worry for the Covid-19 and flu things. It's just a looming cloud out there that I'm going to watch pass by. Eric and I have set up a quarantine zone for me, which is going to make it difficult for other people to visit us, but will protect me further. With all the insanity in the Puget Sound, including the knowledge that the virus was circulating far longer than anyone suspected, I'm just going to stayed holed up as long as possible.

Anyone who wants to visit: We do not have a guest room now because Eric is using it. We only have the downstairs couches, hide-a-bed and cot.

I'm trying to find a good liquid to drink besides water and apple juice. I can't stand cranberry juice, even though that's on the "good" list and I don't drink wine, so it appears that lemonade is my next choice. I need some lemonade with low sodium/phosphate/potassium and sugar. I want to drink chocolate milk badly, but I'm supposed to avoid dairy.

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Tuesday, March 03, 2020

Kidney Saga part 37

Yesterday is very foggy in my mind. I wasn't at my best, and I felt filled with worries and new concerns. I have vague recollections of sleeping and eating and trying to get some exercise in, but not much more. I was very fatigued when we went to get the blood draw, which went great for once, but mostly I have no strong memories of what I did or thought.

Thanks to Lea, another item from my Kidney Wish List arrived, but I haven't been able to set it up yet. I had hoped a humidifier will help with some of my sleeping issues. But I'm still too weak to do basic stuff without help, and Eric has been having ... fun ... with his job. So hopefully he'll get some time today to assist, but I'm not going to push it right now.

I didn't sleep much last night. Not sure why, I can't remember what I was thinking about, if anything, but sleep wasn't around. When I did fall asleep, my body woke me to use the toilet. Fortunately, Eric slept well in the next room. Whew. Inkwell did attempt to "help" a couple of times, after I returned to bed, using his purr therapy. But it didn't really do as much as we could hope.

Not much else to worry about, I guess. I think I just need to keep trying to rest and let the medicine do its thing. I wish I could get off the prednisone, as I'm often fighting it to stop from yelling at Eric or Inkwell or even myself. And when I feel the emotional wave I want to just curl up and not exist for a bit. The memory dumps continue, and are awful. I hope they go away when the prednisone does.

I have been avoiding the news since yesterday morning, and will probably have to avoid it some more. My mind is shattered and I'm having too much trouble thinking to allow myself to worry about more than healing.

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Monday, March 02, 2020

Kidney Saga part 36

I spent a good part of yesterday in my computer chair while Eric cleaned the main bedroom. This was not ideal, as my feet slowly swelled up more than comfortable. I tried to walk around a bit, but it didn't help much.

Yesterday was more about reading the news and getting increasingly worried. I mean, I didn't expect to find out that my old high school is going to be closed today for deep cleaning after a potential coronavirus contact. Since my high school is only about a block from my parents' house, I'm kind of dazed about how close this pandemic is reaching to me.

Admittedly, this closure is out of an "abundance of caution" and not because it's a confirmed contact - just like the Bothell High School closure earlier (which was also my old stomping grounds). But it's still a little scary for me because of my total lack of immune system.

The Satan Spit medicine tastes awful, but THIS IS WHAT IT'S FOR. I'm taking that "tutti-frutti" stuff to prevent my catching anything like this virus, from the flu on up. And suddenly I love the Satan Spit. I wonder if I need to request a refill. Or a couple of refills. Maybe a jug of the stuff. I very much do not want to run out now.

Anyway, the news that my alma mater is closed today threw me for a loop. But there are other news reports and conjecture that added to the worries. The biggest was this thread on Twitter which, to sum up, basically theorizes that the virus has been transmitting in Washington state for SIX WEEKS already. Which is why a nursing facility suddenly had two deaths. It was building for awhile, but no one saw it because people were testing for the flu, and not for Covid-19.

So, life is scary at the moment. I will be going out today to get a blood draw. I will no doubt wear my new mask and see if the gal at the desk recognizes me still. I think she will. She greeted me by name last time at the lab door while we waited for Eric to bring the paperwork.

What a world we live in.

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Sunday, March 01, 2020

Kidney Saga part 35

Yesterday was extremely calm and I didn't overdo it or stress too much or anything. It was an ideal day, with me feeling a little stronger as the day wore on, and taking rest when I needed it. Like, an actual healing day. Wow.

Eric and I discussed his insomnia and decided he's moving into the guest room. He'll be there until at least a week or so after Emerald City Comicon. The idea is that my frequent toilet trips in the night are probably one thing disrupting his sleep, and if he sleeps in the guest room, maybe he'll get more uninterrupted rest.

Well, last night Inkwell decided that since Eric had the guest room, Inkwell would sleep the entire night on my ankles. So it was Inkwell's sleep that got frequently interrupted.

To my surprise, my anxiety levels overnight dropped by a lot. I guess I was worried about waking Eric every time I got up, so with him in the other room I felt less anxious and my body was more relaxed and I was able to rest better. So Eric moving out helped me and not just Eric. I hope this works out in the long term as well. Having better rest means that I was able to move around a little better this morning, which felt good.

My current biggest problem is lifting my feet. I can walk fine, and going downstairs isn't a problem. It's trying to get back up the stairs that causes issues. I am working on lifting exercises with my legs while in bed, but I can tell it's going to take awhile to get the strength back.

Mentally I'm still all over the place. The prednisone continues to dump strange things in my head, and I can sometimes barely hold in the emotions it washes over me. Most of them don't make any sense. I'm still avoiding reading the news in depth, although I keep skimming to make sure I'm up-to-date on the latest nonsense. Mostly I'm tracking the Covid-19 info to watch for any further precautions I might need to take.

I will say, I'm on the double-dose of the main medicine now and there haven't been any major changes or side effects that I've noted (knock wood). This bodes well for treatment moving on, I hope. It I can tolerate the triple-dose, then we'll be able to move forward. As always, a lot depends on the Monday blood test and what it shows. The incremental improvements so far have been both positive and depressingly slow.

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