Next step to transplant

Yay, I finally finished my "oiling" project.  It's that snowball that I created when I had to condition the cutting board, then came my knife block, then the knives in the knife block, then everything in my kitchen drawers that were wood or had dry wooden handles.  (That eliminated my Mom's & Auntie's utensils which were conditioned over 60+ years of much use.)  I had put the project aside when I wasn't feeling well, didn't have the energy for it.

So I have my appointment in August for a day of tests to determine the parameters to match me for a kidney.  Yea, these things don't move very fast.  Even after I get on the transplant list, it's still a waiting game for a match.   I've been to two hemodialysis treatments now and I find myself with more time in the day because I don't have to clean & set up for the overnight (every night) treatments.  However, I now go 5 days between Friday and Wednesday between treatments, so we'll see how I feel toward the next treatment.  But, hey, that means I can do weekend getaways & sleepovers now!

Fast recovery

I was actually feeling energetic by the end of yesterday (12 hours after I checked in for surgery), even more so this morning.  I think it had more to do with getting good sleep instead of waking up from sounds & light from the PD machine.  Got a couple errands done before I ran out of time and had to go to clinic.  But since I'm not connecting myself for a few weeks, I have extra time at night & in the morning.  I don't know what to do with myself!  

I brought my sketchbook to today's treatment but wasn't too ambitious.  There's not really a table to use while connected in-clinic, so I just played on my phone for 3 hours.  My neck was tired by the end.  I guess that rules out bringing my (huge) laptop, too.  I thought maybe I could get work done but my laptop is too heavy to just be on my lap and it gets too hot, so won't be bringing that.  There are no tables to put stuff on.  The TV for each chair hangs overhead.  Ooo, something to sketch!

Third time's the charm?

So I was good for like two weeks?  Then last Friday I had that pain again.  I happened to be at the clinic to turn in a specimen of the drained dialysis fluid after two hours.  Results on Monday: infection again, same strain, so same infection since December.  So I'm back on the antibiotics regimen.  Also going back to surgery.  Kidney doctor thinks the catheter is hiding bacteria that the antibiotics can't reach, so they're going to remove it and put a new one in a different spot on my abdomen.

So much personal life that I haven't done yet, mostly personal finances & taxes.  But also reclaiming the space in my house is heavy on my mind.  I just haven't had the energy for it.  Saturday & Sunday was so low energy for me, I mean non-existent.  I didn't do anything all weekend.  Started feeling better on Sunday, so I had to rehydrate with a pot of tea when I ran errands so that I could have specimen to deliver on Monday -- more fluid from the all night treatment.

WFH today

I couldn't have picked a better day to ask to work from home.  It's raining all day.  But more than that, 

1. I had medical supplies delivered this morning (they chose the day, I chose the time window).  
2. Then I had to go to the dialysis clinic to pick up a bag with antibiotics. 
3. Short window to get some work done.  Mind you, I can't do all my tasks from home but design stuff for sure, and I brought printouts to verify.
4. Then I had a virtual medical appointment.
5. Combine that with about 30 minutes to administer the antibiotics -- let's call that lunch.
6. Then I can work even past dinner.  I don't feel hungry when I've got 1.5L of extra fluid in my belleh.
7. Or maybe I should quit at 6pm and use the time to organize my tax papers so I can set an appointment.

Amazon splurge rabbit hole

So I've been having health ups & downs.  Thursday I had a fever and stayed home from work.  I intended to go in by noon but I ended up sleeping til 5:30pm when hunger woke me up.  Last week, however, I had a bit of a splurge when I was feeling good.  I really haven't bought anything for myself for quite a long time (almost two years?)

I bought a cooking knife which stores inside a wood case.  When you lay the case open, it doubles as a cutting board.  I bought "the good brand" but was so disappointed.  The wood was gouged & dented in shipping because it had no padding, not even cardboard.  Furthermore, the wood was so dry, I had to buy cutting board oil to seal the wood.  But before I figured that out,  I bought another one (bigger size), a knockoff brand, half the price of the first.  I am so happy with this one, it has a thin coat of sealant so I don't have to do anything to it but wash it.

Since Mom passed, I've been looking for a solution to cooking smaller quantities of rice.  I do have small electric rice cooker which used to be the right size when Mom was living with me.  Since then, even making the smallest quantity would sometimes be in my fridge so long it would go bad.  So I bought the smallest clay pot I could find to make rice on the stove.  I know, I could just do it in a small cooking pot but you have to watch it carefully.  Works like a charm, but I've only used it once so far.  You don't have to watch the clay pot as carefully, it's more forgiving.

So in my condition, camping would be very difficult for all the dialysis stuff I would need to bring for one or two days.  So why would I buy not one, but two, little pocket stoves that use solid fuel.  I got it for my emergency kit.  Why two?  I wanted the camping pots that came with one set, yet I wanted a rack that was only available with the other set.  But dammit, neither came with the fuel pucks, so I had to buy that separately!  I've always kept emergency supplies.  When I lived in Texas, it was for tornado emergencies & frozen days.  In California, earthquakes & sometimes we lose power when there are fires nearby.

Now the rabbit hole:  I oiled the first knife case.  I liked the result.  I'm going to keep it in my office desk because the ones in the break room are so abused and sketchy.  Sometimes the warehouse guys borrow the knives for shipping because it's sharper than anything they have.  Jeez, box cutters & their replacement blades are so cheap (under $5) but they're not getting the tools they need.

So I looked at all the knives in my knife block and the knife block, itself.  They have wood handles that have never ever been sealed, estimate 40 years?  I got them when I got my first house in my 20's.  I remember hunting down and ordering this specific Henkel's knife block and waiting a month before getting it because it came from Germany.  It was the only one that matched perfectly with my new knife set (not Henkel's).  Then I pulled out all my wooden kitchen utensils that I didn't inherit from Mom or my Auntie.  They need oiling too.  Mom's have cured themselves over time because she used them so much.  I'm still half way through oiling everything (sigh.)

Back on track

But why am I still going to work?  I did get the probate stuff done but not the annuity claims.  I lost alot of weight unintentionally but I have alot to lose.  I'm not underweight by any means.  I like where I'm at but I've also lost alot of muscle strength over the the pandemic.  I would like to rebuild that.

New Year, wish it were better

I've been having dialysis problems.  I'm not draining.  My employer changed insurance last December 1, it was supposed to be transparent to us.  Well, for my primary doctor & kidney clinic, it seems to be.  Trouble is my catheter that is used to bring in dialysis fluid and drain is plugged up with fibrin.  That's kind of like scar tissue that the body creates.  So between the new insurance and people not working between Christmas & New Year, I haven't been able to see the doctor I need to see.  Namely, the vascular surgeon who put in the catheter.  

I've been able to "see" my primary doctor and my kidney doctor/team and we've had a couple failed attempts to clear the tubes. As of today, it's been 10 days since my last dialysis treatment.  I wasn't able to schedule last week & do stuff as if I were already retired.  I've spent all this time dealing with insurance bureaucracy.  It's really frustrating.  I sent a letter to HR, I'm not coming back into the office until my dialysis resumes normally.

Edit 1/6/23: I did get to see the surgeon today, he's set me up for outpatient surgery on Monday.  Sounds like he did consult with my kidney doctor.  However, my boss couldn't wait for me.  He called Thursday to ask me to do what I can from home.  I just know I couldn't have gone into the office because he hates to see people on their personal phones in the office.  I've been advocating for myself 9am to 9pm until I got that surgery scheduled.  So I did get in a few hours of work on Friday, interrupted by a 2 hour errand.

Edit 1/15/23: Won't go into the details, so did revision surgery (laproscopy) on Monday, the 9th.  Then went under again for 2nd revision surgery yesterday/Saturday.  It's a quick surgery but it can't be done in the doctor's office and it's under general anesthesia.  Praying for good drainage for me and for California.

Merry Christmas

So I'm off work for the next 11 days.  The company is still open between Christmas & New Years, I'm just taking unpaid vacation.  I put in for the time off after I collapsed thinking I need more recovery time but I'm doing well.  Tailbone still hurts if I sit too long on it, like slouching, so I've been more conscious of my posture.  It hurts less every day.  At this point, the daily change is miniscule.   I'm still like Princess & the Pea, if there's a cloth fold or anything extra under my tailbone, it gets uncomfortable.  Today, it was my sweater while I was sitting in the office chair.

I'm going to visit family this weekend, but only this weekend.  I have to be home at night for treatment. If I were to stay over night, I have to bring dialysis stuff: 2 bags of dialysate, the 40 lb machine, a cassette (tubes), stuff to clean the exit site, and stuff for connecting & disconnecting.  Bah Humbug!  I don't care how late I get home.  I'll sleep in on Christmas day while I finish the treatment that will run late.

Damn, it's almost 8pm now.  I was going to cook something to bring but I have to connect around 9pm so I don't have time to cook.  Back up plan is to pick something up on the way.  I hope the restaurants I want to go to will be open tomorrow before noon.

The bonus was more than usual, but no mention of meeting goals in June's project push, so I think they pro-rated that portion and added to the usual.  They didn't mention my attendance, not making 40 hrs/wk.  

Next week I'm going to pretend like I'm retired for a week.  I'm going to do stuff that I want to do that I can't do when I have to go to work.  If I like it, I'll announce my retirement.  If I'm bored or bouncing off the walls, I'll do another wait & see.  My auntie's cousin called me (I don't know what level cousin that makes to me) and we had a little chat.  He told me to retire--this, the man who was still working at 75yo.

I got old overnight! What?

It was a tough week.  Started out really itchy all over, I think my phosphorus was really high from a couple days of large peppermint mocha.  Mmmm, so good, but not worth the intensity (and now mini scabs from scratching), so not going to do that ever again.  I thought I could get away with it as long as I took a binder.  

Wednesday I went to clinic for monthly lab draw.  My blood pressure was really low while I was there, worse when I stood up.  As I  drove to work, at my exit I was getting that tense feeling in the back of my neck and my vision was starting to change (things look overexposed) and my ears were plugging up (like being under water).  I made it to the company parking lot but I think I fell asleep for 5-10 minutes.  I looked at the time.   Damn, I better get inside!  I only made it to the back of my car before I collapsed to the ground.  I think this is when I landed on my tailbone.

Fortunately there was a guy in the parking lot on a phone call.  He saw me on the ground and helped me walk into the company lobby.  I just needed a hand to get off the ground.  So I sat in the lobby for a few minutes & was given a bottle of water until I felt up to walking to my desk.  I only made it half way before I collapsed forward and landed on my knee.  I was made to lay back but it wasn't comfortable.  Someone grabbed my office chair and wheeled me the rest of the way.  I drank water & nibbled on salty pretzels to get my blood pressure up.  When I felt better, I had a can of soup (more salt) from my desk.  I hadn't touched that since starting dialysis because of the sodium & potassium content but on this day it was a good thing.

When I got hold of the clinic nurse, she confirmed we did everything right re: water & salt and that taking the (next) day off was a good idea.  I thought I might catch up on paperwork but I couldn't be on my butt for long.  I survived Friday.  I can find comfortable sitting positions now but I have to move slowly when I walk around the house.  OMG, I walk like Mom!  She used to call me copycat, in response.

OMG the year has flown by so fast

I got a new mini gaming keyboard and just wanted to type on it.  I'm definitely loving it more than the keyboard from work, which was too big for my home desk and doesn't have that tactile feedback. Couple weeks ago I got a gaming mouse, as well.  It was actually recommended for the work that I get paid to do, but I haven't been doing work at home.

I was hoping to get back to JediMUD and program my gazillion mouse buttons with triggers.  I guess I was too hopeful that the online game I used to play in the 90's would survive 25 years online.  The site is still up, though the link into the game is Error 404 (not found).   Whoa, it's up today!  Didn't work over the weekend.

I think when I get back to editing videos I can make use of the programmable buttons.

Meanwhile, Happy Thanksgiving.  I'm going to hibernate this weekend.  I have a cold and I don't want to get family sick.  Uncle is in his 80's and his wife is almost 90.  I could really use the rest and don't need the 3-hour drive.

Oh, I got the Medicare.  It's absolutely useless as long as I have employer's insurance, but it means there's nothing left to keep me from quitting.  I'm going to hang on to the end of the year to see if leadership have any inkling of integrity or if they're going to find an excuse to stiff me on the bonus they dangled in front of me in June.  Knowing them, they're going to just give it to me as the regular end of year bonus that they would have given me anyway.  They'll either say I didn't make the deadline or they'll say the bonus is the bonus. 

Medical insurance

I don't know what the deal is...why is it so hard to retire early?  It's not THAT early for me.  And I don't plan to be entirely retired.  All I need is medical insurance!

Right now, I'm working until the company won't pay for my medical insurance anymore.  They can't fire me but they can take away the one thing I'm sticking around for.  I estimate I'll run out of vacation time that I'm using at the rate of 5-10 hours/week.  Another 6 weeks?  There's a Kidney Fund that gives grants to help with medical insurance premiums but there are qualifications.  Geez, to qualify you'd practically have to be a minimum wage worker without an emergency fund!  Okay, they need that more than I do.

I've brought up Medicare.  I don't understand why I'm discouraged by the medical team from Medicare.  I did learn that I won't qualify for the Advantage plans that worked well for Mom, it's for over-65.  That means $170/mo for premiums plus 20% co-pays.  It sounds like a PPO plan.  It would be nice to have double coverage for a while so that nothing's out of pocket.  I heard that might be possible.

I looked into Obamacare.  I'm sure it's cheaper than COBRA.  Looks like $700/mo for me even if I continue to have the income I have now.  That's going to drop for sure in 2023, so would be cheaper as long as I don't do too much semi-retirement freelancing.  Co-pays for the plan I targeted would be less than half of what I pay now in co-pays.  But I was told it could be cheaper than Medicare.  Not for my situation.

What would I do in retirement?  OMG, so much to do.  As it is, I hired Merry Maids to come this week for some help getting my house cleaner for the dialysis treatments.  I admit, there are some things I never learned to clean.  Mom was a home economics major but she admitted to paying her classmates to do her dirty work.  The only times I ever wiped walls was to prepare it for a new coat of paint, so I didn't have to work around furniture.

I have to tie up Mom's probate.  I have a house full of stuff and a storage unit to empty.  I'm not going to bother selling stuff.  I don't have that kind of hustle personality.  But I do have to arrange getting it out of my house to reclaim usable space.  Then there's my retirement plan:  getting back to art and tai chi.  I think my travelling is done until I get a kidney transplant.  There's just too much logistics of bringing dialysis equipment, supplies, and arranging the amount of dialysate that I need.  I was invited to my cousin's house for the weekend.  I don't want to bring the machine with me and all the extra stuff I need with it.  So I just didn't go.

It finally happened

Since April, work really ramped up in intensity.  At my 12-year annual review, I was offered overtime for the first time working at this company for this high visibility project.  There was also a bonus offered if I completed all the designs by July 1.   Knowing the mechanical designer for so long, I knew he was going to keep changing things past the deadline and there was no way to make that deadline for all the designs they wanted.  Plus the new engineer keeps changing things, too, seems he's in no hurry either.  Whew, my blood pressure shot through the stratosphere.  I guess they weren't offered bonuses, just overtime.  I got to take home my old computer (still has everything I need on it) after I updated everything.

Having missed the deadline, 8am after the long weekend, I get a call to head to the hospital to take tests. Then surgery is scheduled for Thursday.  My friend helped me out with the ride to/from.  While she was on her way, I called out at work.  I only told them I was on my way to hospital that I might have surgery that day but I was told I can go back to work on Monday.  I'll be going on dialysis in less than a month.  I still have a little function in my kidneys so the hope is dialysis will allow the kidneys to recover a little.

So the boss asks me what happened.  He asks in the middle of the hallway!  I asked to meet with him and HR (his wife) together.  Then I drop the news..."kidney failure happened.  I'll be starting dialysis soon."  Jaws dropped.  I forgot to remind them about HIPPA. But I continued, "so this is considered a disability."  Now they can't just fire me when I can't meet full time hours, 40/week.  "As such, I need some accommodations.  Right now that is in the form of time, starting with 2 weeks of dialysis training."  They promised their full support.  When the old engineer died, he was the last in management with any integrity.  I haven't told them that kidney doctor wants me to take 3 months off work while I adjust to the new routine.  They'll need to replace me to get anything done.  But now, because I have the work computer, I have capacity to work from home.  Work is work whether in the office or from home.  We'll just have to see how that plays out.