I *HAVE* to ...

 ... go into public today.

Happy Friday for those that care. For the first time this week, I have woke in the morning feeling somewhat refreshed. I crashed last night about 10:30p, and slept thru until the Wife got up to get ready for work. I feel rested for the first time in quite awhile. And that needed sleep? I think it helped with some of the other stuff (symptoms) I have had recently. So no major side cramps (so far), feeling rested, and now anxiety. I hate shopping, no matter how many times I go, I still hate it. But I mentioned to the Wife I would try to figure out a recipe for the crockpot for tonight. I think I have found a nice chicken and potatoes one to try. I'll go out and get the items needed, and some the Wife said she needs more of, and let it cook all afternoon.

Went to the CoL yesterday. Aside from the circumstances, it was good to see my good friend and his family. Many others there I know, and were glad to see as well. I opted out of the reception/food after the event, as it was a bit further than I felt like driving (I had been up over 48 hours at this point, and didn't want to drive much) so I went to the Post instead - what? It was only a 1/4 mile from the cemetery.

I had a tea there, and was feeling crappy so headed home. Picked up burritos for dinner. 

Todays plans make me tired already. Shopping, then getting food started. I need to log in to the portal for Mayo and do the pre-check-in stuff for some of the appts next week (only 7 days ahead of time so can't just do them all at once).

Oh! I wanted to share! A small bit of faith in humanity was restored to me yesterday. Late last year, The Wife's Company gave us some money to help us financially (they were aware of my liver diagnosis, etc.). This is from a special fund the Company keeps and has employees from all facilities contribute a small amount to each paycheck. Something like a Wellness Relief Fund, that an employee can request funds based on situation, for another employee (as in our case). Well, the petitioner is anonymous, but the Wife found out yesterday who it was, and why. This fellow co-worker felt that the amount the Company gave us wasn't enough (depends on how you look at it) and held some kind of silent auction for an iPad or something. Yesterday she gave the Wife $570 cash she had raised raffling that off. Such a nice, and unasked for gesture. I told the Wife I will draft up a very nice thank you, and find a card to give this lady. The amounts given to us by the few people are always a tremendous help to the mountain of medical.

I've lost 90 pounds since September. Back then I was weighing in 330-333lbs. Wednesday I weighed myself (after the Para) and I am down to 241lbs. In my head, my ideal weight is 230, and maintain. But I know I need to build muscle mass back up (I am so weak now) and would be nice to get rid of the baggy flesh on the body (I know, eventually it will go). So, almost time to start clothes shopping. In fact, while dinner is cooking, I need to go through my clothes and start ridding myself of now too big/don't wear items. Wife will take the ones in decent or better shape to the facility - they always need donations of clothes for their older LTC patients with no families (note to RM? If you go through your clothes, but they need more like Tees and Sweats/shorts).

Okay, my phone has just about run through every type of notification sound it has.... I suppose I should go see what they want.

PeacE

Reading ... Sigh

 Surely I have mentioned, in fact I know I have, that in the past six months, my ability to sit and read like I used has gone away (temporarily I hope). I have been forcing myself to try to read for a minimum of an hour each day, but that is getting harder - to allot the time for it than to actually do it. Today I printed out the Liver Recipient Patient Guide from the Mayo Clinic - 76 pages of information regarding the transplant process through after-care, and beyond by explaining much of my new meds after the transplant I will now be on for life. Then there are the other factors that I have to maintain throughout the rest of my years, mainly to prevent any rejection of the liver, or other complications. Reading through just a portion of it tonight, my head is swimming at all the changes that will be made in my lifestyle: diet, exercise, being in public, even into medical issues: if this happens, if that happens, if another doctor tries to prescribe, have them contact Mayo (so as to not screw up the transplant drugs. The whole thing is just so ... massive compared to the ideals I had of it (thanks television). Lotsa big changes, and I am ready to do them.

What did I do today...? Oh yeah! I had the weekly paracentesis done. Last week only 8.6L were drained, which is good. Today, that dropped to 7.0L!! I think I will still keep my appointment for the next one on next Wednesday, but if the next drain is smaller, I'm going to try to go 2-3 weeks between. If it is draining, or not mass-producing like it has, I'm happy!

Afterwards, I swung by the Leather Shop and picked up my new vest. They are going out of business and have a 50% off sale, and I scored pretty good. Got a lighter vest to wear, and decided to make it my "fun" vest. So I picked up some patches that had humorous sayings, got my nickname badge "Ashol", all of them sewed on ... for less than the marked price on the jacket ($149). Did I mention the 50% off, plus a VFW discount? Yeah, always nice. So now I have a new vest for non-VFW events.

Came home, had a small cup (maybe a half-cup) of the broth from RM's Chicken Chili (so good!) and then I decided I did not want to sit at home all day. I'd been home most of the 5-6 days before as I was not feeling well. VFW closed today, so headed over to my pub, the Other Room. I had a small pitcher of coke, and tried to read, but couldn't stay focused on it. So I played some games. Went home and filled up my Taz Mug (holds 2 cups) of chicken chili, including a third of the glass with the solids too. I heated it up, and added a couple extra spices I like, and was so darn good! Glad RM gave me the recipe to use later on. Could be a good crockpot recipe for next week when I get home late from Mayo, dinner will be ready - and for the Wife as well! 

I decided I needed to get that Patient Guide printed, so I started it (76 pages). Then, because I was trying to save ink, I had it print in greyscale, and the other option about saving some ink - I forget what it was. And still, anything that was in a font color other than black, did not show up. SO I had to go through page by page, comparing what was printed, and what was missed. Overall it wasn't terrible, and I just copied it from the pdf to a doc, then added to the bundle with note it goes with attached page. I had already put my appointment schedule packet (another 36 pages) in a small binder, but I want it all together. So I found a large binder here at home (thanks for rat-packing!) then I had to 3-hole punch all the pages. Oh - frustrated. I only have a hand-held single punch tool. Well, I guess more than 5 pages at a time is too much, as I broke it. I asked the Youngest if he knew if there was a hole punch anywhere, and he brought me this OLD 3-hole one. It's like a ruler with the three punches. You put the pages in, align to the edge on bottom, then push this metal plate over the punches & paper, and push on it. Old-fashioned!! I kinda like it. SO I did all that, put in the bunder, did separators for Patient Guide, and Appt Schedule, Misc. (copies of my list of doctors, prescriptions), and then the after visit summaries (these I am keeping to Mayo). All the other paperwork I have from discharges, etc. from Banner I plan to work into another binder, and the Wife agrees, just to have available for the unforeseeable time frame. Never know when there might be something in there another doctor needs.

By then it was near 11pm, and I headed to the bedroom, with the binder. I showed the Wife what I had done (she thought it was a good idea), we talked about which appointments she wanted to attend next week, and I marked them, plus she has the dates to request partial days off for the two. One is the surgery consult, the other is the week after testing where they will probably go over the results with me and what they are going to take to the transplant council. Then I decided I should actually read this thing, and began to do so. Oh my. There is A.TON. OF. INFO. I quit about 1/3 of the way through. Brain overload. So many emotions even about just what the typical standard transplant pre-, during, and post-care things that happen. And Life style changes.... I'm starting to repeat myself....

Today. Thursday. I thought I would wake this morning feeling refreshed, nausea gone, able to eat some Raisin Bran even! Nope. Up all night. I would just go to bed at like 5am like many other times, but I have a funeral service to attend today, followed by the cemetery ground internment. And that starts at 9am about a 20-minute drive from home. Need to leave here about 8:15a at the latest to be sure to get parking and a seat.

Okay, I am outta here for now.

PeacE

It's Coming Up Fast

 It has been quite a stressful past few days for me. Aside from most of the past 4 days feeling quite a bit of nausea, I think I am almost back to what would be considered normal at this time, I guess. 

At 10:15am I was scheduled to have a video conference call for an Educational Visit with Mayo. I had given up and was going to use my phone (no camera on the desktop), then remembered my laptop may have one. I checked and it did. I got that set up and did the conference call. It was mostly a PowerPoint show about the Liver, how it works, types of causes of failure, types of transplants - then a Q&A session after. I was in with about 6 other patients, so we weren't to ask specific questions to our case, just about the info provided or general questions. I didn't have any, and the few I heard asked I already knew the answer to, so I ended it. I realized, that my camera doesn't like low lighting. All the rooms in our house are dim, so I needed somewhere brighter. They specifically stated not to do the appointments in public places, or somewhere with other background noise/people that can distract whom I am talking to. So I called my Mama, and RM was happy to have me come out and hook up there.

Out I go, and realize once there, the afternoon appointment is phone call only - no video needed. I didn't need to be there. Oh well. I stayed and visited a bit. Did the appointment. Then worked some emails and other VFW related. I got quite a bit done. Then stayed for just a small fraction of chicken chili soup. I was still getting over several days of nausea, but this seemed to be okay. I took the leftovers home, where Wife had a bowl last night, and I will finish off this afternoon. It is mostly broth now, and for some reason, that sounds better than solid food right now. Then evening came and I had to go. Stopped and picked up 'scripts, and milk, then home to bed.

I had my first two conferences with Mayo yesterday. The first was an Educational one, and lasted about an hour. Most of that hour was a 45-minute PowerPoint show about what the liver does, causes of failure or decay, types of transplants, etc. When I asked afterwards if it was available in PDF from our patient portal, I was told no. They felt it isn't needed, as 99% of the information within will be reiterated over and over as I go through my week of tests, procedures, and consults, that we will probably get tired of hearing it. The second one was the Finance Call. Ugh. I was dreading this one, and of course it is almost before any other thing is done. Best news ever! According to them checking with my insurance, it is confirmed deductible and out of pocket amounts have been met, so all appointments/tests/procedures, the transplant itself and all related needs/services should be covered 100% (or at least no cost to me). Whew! I was worried about with a transplant the insurance would still make me pay certain things as it it is not a normal type thing.

I had shared what is going on with my health with a number of people. Most of whom I considered close friends, but I haven't been shoving it down everyone's throats that I am sick and this happening - poor me!!. Well, yesterday I wrote the Post Commander, Auxiliary Secretary, Riders Director, and House Chair about my medical. I did not go into great detail, just that at some point in the future I need a couple months off my appointed duties, and wanted them to be aware to help find someone to take notes at meetings for me. I can still get minutes and agendas done with notes, and the rest via email or calls. Plus, I would like to retain the position, so return to it once I am able. Two have already responded to just concentrate on getting well, and we will get done what we need to get done for my notes etc. 

I also had a document I had adding to since December. It just basically explains what happened, what's going on, what the next steps are: I did this for family and friends so I don't have to type it out all the time, plus there are some I just don't communicate much with, that I felt should know. That went out yesterday. Haven't checked my email this morning - it's the next stop.

It's a Para Day! Headed out in an hour to get drained. Hoping numbers are down.

Can't think of anything else today. I did have to go back and add somethings, so there may be some repeating in this post.

PeacE

Dinners, Nominations, Election Time

 You are probably looking at that Post title and thinking I have finally lost it. The Elections aren't until November! Well, not in the world of the VFW. Our fiscal year runs June-May, and our elections are held in May for Officers in the following year. More on that later, I'm getting ahead of myself.

Tonight is our monthly Rides Dinner. Have 5five volunteers for making soups, but one backed out last night as he is unable to attend due to other reasons. Too bad, he was making the Cabbage soup that I liked last time. So I am down to a Bacon Cheeseburger, Chicken & Rice, Stew, Korean Pork & Potato, and Sinigang. I'll bring some saltines, and the Post reached out to me the other day, as they have some rolls that need to be used up. I offered to take two bags (about 24) off their hands. I'll heat those up just before the start of dinner tonight. No idea who will help with anything, Aside from the one that signed up, but that seems par for the course lately.

Elections. I am so not looking forward to this. So, last night I was talking with T, our Sr Vice of Aux, and she happened to mention that I was being sought out for the 3-year Trustee position. It's not full of duties - meet a couple times a year to go over our financial figures and make sure we are in agreement (two other trustees and myself). So I admitted I would accept the nomination when made in May. That'll make me a titled position holder in all the groups I am working with at the Post. The Riders. Oy. Over the last year, the VFWRG has been working on becoming its own group within the VFW sphere, rather than being a sub-committee for the Post. There will be many bylaw changes once we are ready to vote on this topic, which I don't forsee happening for closer to another year yet, if not longer. So I figure we are going to run with the current bylaws for now. That means I have three electable positions that need to 1) retain the seat, 2) vote in replacement, or 3) Leave empty. All three must be Comrades (Veterans) and two must actively ride cycles. With our participation numbers so low, and the current requirements, I really hope everyone just retains the seat they hold, and we fill the one open position we have. That is my hope.

So all that coming up in the next couple months. Preliminary appointments with Mayo Clinic start the 23rd of this month, and though only last about a week, I am not sure how much longer it would be to get some answers finally, like: Where am I on the list? What's the typical wait time? Should we do the TIPPS prior to since we have no clue how long it will be before a liver is available.... Things I never would have guessed myself asking 54 years ago.

Anyways, I need to get out and get some errands done before heading to the Post. My 'special prescription' should be ready for pick-up at CVS. Need to go by the bank to provide cashbox change for tonight. Need to grab something to eat. Kind of in that order, too.

PeacE

Belt or Suspenders?

 Recently, I made a purchase of a pair of suspenders - not a nice set like to go with a suit, but a practical one for fat guys - it is thick and strong. I decided to go back to wearing them, as it is just too much of a hassle all the time to walk around holding up my shorts. Seems no matter how many holes I add to the belt, it just doesn't hold them up as well. My thing about suspenders, however, is you basically have to wear them with your shirt tucked in. I don't like. Being heavy is bad, too, and I feel like to shows off my "fatness" in the abdomen. But I will suck it up, and wear them. So much better.

As happens each month, I attended our regular monthly Auxiliary meeting this past Tuesday night. Usually I walk out of these feeling like nothing pertained to me, and most times that is true. So I was only half listening when we had a verbal disturbance crop up. I'm not going into details, but I was requested to provide a witness account of the event. I typed that up prior to getting here, and I admit, I don't like doing it. I am not a fan of one of the persons involved, and I really did not like writing this report, but I did it. I also included a statement about my encephalopathy, and how it affects my short-term memories, and that I reported as best I could. I left out details that happened, that really didn't need to be in the report.

So I sent that off, and immediately received a reply from the Treasurer/Secretary thanking me and commenting it would be fine, and the bottom line is being truthful. <eyeroll>.

Tomorrow is our Rider's Dinner, and reading RM's blog this morning, I see she takes her Rider Dinner nights pretty seriously. I guess she feels she doesn't see me enough, and if this is the only way for her to have five minutes with me, so be it. Trying to make my list of what I need to bring for tomorrow: saltines, cash for cashbox, and I think that is all I need to worry about.

Yesterday was draining day, and I got a surprise. They were only able to drain about 8.6L of fluid, rather than the max of 10L and b even better than the higher amounts they were getting. Hoping it is not a fluke, and something is starting to work correctly again, but won't know. Mayo testing is in a week and a half.

Okay, cutting this short as I need to get moving. Figure a bank run and then head to the post.

PeacE

In the Last Words of Our Leader ...

 ...Naw, I got nothing.

I'm getting online here a little earlier than my usual mid-day. The Wife has been assigned a student (Again) at work, and that requires her to be at work by 8am, rather than the 8:30-9an she had been doing. So, I set my alarm to assist her getting up. Then I am awake. Usually I can roll over and go back to sleep, but figured I would have to get up in a couple hours anyways, I rose this morning.

Today is a draining day, where I have yet another paracentesis completed. I am hoping that after the week of appointments, and we know pretty much all we can about how bad the liver is, that we will have a time frame in place that I can stop these! Even if we have to do put in a TIPPS device, anything to be able to stop getting the paracentesis done. I have this area on the side of my abdomen about the size of a fifty cent piece, that is a collection of pink dots, from the punctures at these drainings. It looks ugly. And I am tired of going. Whine, Whine, Whine.

Received some interesting news yesterday. My Sissy that is about 12 years my younger, and that still lives in Indiana, sent a text out. Seems she is pregnant. No big deal? At 42? She had gone in for some spotting, and came out expecting!! So I will be an uncle again. I am so used to it just being us older siblings, with only about 2-3 years between our ages, that Lil Sissy is much younger than us. Well, I am glad for her and the boyfriend. Again, wish I lived closer to Indiana so I could visit more. Or maybe this is a sign that I need to get back and visit, for myself as well. I'd love to take a couple weeks and drive back, but I don't see that happening. I mean, it could like if someone died, but otherwise the Wife would want to be able to go with me. She gets upset when I travel and do something without her.

Dumb, little story for the day. Recently, I had ordered some little things from Temu (I am sure you have heard of them). Aside from their biggest catcher ("you only have $1.38 in your cart being shipped from Temu. Add up to $20 to get free shipping!"). Anyways, that isn't what came to mind. I had purchased a smart watch. I know, you get what you pay for, and this was pretty cheap at under $10. The purpose I bought it? To monitor my steps so I can try to stay at the same level daily, or evenly increase daily and be able to know it. Needless to say, I plugged it in to charge, and downloaded the software on my phone. Within the first hour, I was done with the watch. It took all notifications, rings, alerts, alarms, and put them to the watch, instead if the phone speaker. So the watch vibrates (no noise) and in theory, I could see the message, answer the call, etc. if I knew about it. The watch isn't on my wrist, so how am I to hear a late night call for help from one of the kids? Or reminders for certain events that I have to be somewhere at a certain time. Yeah. This is not working for me. So I now have an under $10 smart watch. All you need to do is put the software on your phone. I may look into just getting that basic pedometer for like $6. I dunno.

Welp, I shared more today than I thought I had in me! Reminder RM, the Riders Dinner is Friday!

PeacE

Starting to Panic ...

 Over the weekend I hopped into the patient portal for Mayo just to see if there was anything new I had missed a notification for. There was. And there was a flashing red dot under appointments, so I look there, and find there are 24 appointments scheduled for me. What?!? I wasn't called for any of this - oh wait. This is the week of testing I bet. Sure enough, one of the emails included a download of the Patient Schedule for the week of the 23rd.

Mayo has two campuses here in the Valley. One is about 10 miles, the other (main) is about 20-25 miles, from my house. The appts are split up between the two campuses, though only one day I have to go to both campuses. Looks like most of the easier stuff like bloodwork, consults, etc are done at the one, and the more medical like CTs, MRI, etc are at the main campus. Either way, this :pamphlet" was 50 pages printed out! But it is detailed for time, date, location, and for some appts, estimated time of appt.

It's just a lot of stuff, crammed into a short time. It's making me feel like an anxiety attack is coming on. 

After that week, I find out how bad things are, how severe the damage is to the liver, and where I will be placed at on the transplant list (assuming I am that bad). Then it's a waiting game for the an available liver that meets certain criteria. Could be months - years even. If that's the case, I have a feeling we will be looking at a TIPPS procedure in the meantime. That's the one that a device is put in that bypasses some of the blood going to the liver, to ease up the pressure it has to work under. It'd be removed with a transplant, and the thought is it would help with the fluid build-up.

Been staring at the screen for a half hour now, so I guess I should wrap it up ...

PeacE