Gotta Get It Done ....

 Today I have no appointments. Well, not really. Waiting to hear back from a place I am doing the IOP. I may have to do their Intake Admission in person, but thought she said we are able to do most of it over the phone or Zoom calls - including my sessions. For what the insurance isn't covering, I should get a steak dinner in there somewhere, too. Either way, that will get started today. Oh! I checked my calendar (thank goodness!) and I see there is a Group Zoom meeting tonight at 7pm that counts for AA and support. I'm going to try to do my meetings with them on my weeks I do not have VFW meetings. Those nights I still need to locate an online/in-person site to pick one. Have several in mind.

Tomorrow is my Para. I feel we will be draining some amount, as I am starting to feel the build-up of fluid. What a joke, right? Get it, April Fools Day? Thursday is another day with no appointments except a possible Zoom liver transplant support group from 12p-1p if I want to - not required. So I set up a service appointment with Toyota. I got a safety recall regarding the OCS sensors in the passenger front seat. Seems some were made improperly and can short out, causing it to reflect incorrect weight and possibly cause the airbag to NOT deploy. I set it for 7am. Trying to reach out to RM now, and see if she could pick me up from the dealership ( a couple miles from her) and I could go visit until it was ready, then get a ride back.

Today I am going to be hating Life. I MUST/NEED to get the medical finished calculated (plus mileage) and read up on how much medical we can claim, and get the taxes done and filed! I have had paperwork strewn all over my desk for the past few weeks as I try to piece together 2025 medical, and get 2026 recorded so I don't have this mess again. Adulting is getting harder.

Talked to RM, looks like I will be visiting with them on Thursday. Waiting this morning for the call for the IOP. And working papers for taxes. Joy.

PeacE

Monday Preppin'

 I slept good last night. I was wearied out all day yesterday, and forced myself to stay awake until about 9:30p. I slept good through the alarm going off 10 minutes ago. Still feel a bit groggy - still trying to get the sleep the body needs to catch up on.

Here in about a half hour I have a Zoom call with Dr. This is a Psych Doc, but they said he is the one to ask about a sleeping aid prescription. Other than that, not sure what else he will be asking. I should be pretty much done with questionnaires and all. I am hoping it is a really short meeting, as I need to be at the Phoenix Campus for a 9am appointment, and morning rush hour is upon us.

So the Zoom meeting, then 9am the Research thingy, 10:45a Consult to go over recommendation to the transplant council and things to complete prior to, then Nutritionist at 12:45p. Shots w/PCP at 3:30p, and I think I will be really mentally drained by then.

PeacE

A Little Quiet

Oh, the joys and goodness of good sleep! I actually slept through the night, having only woken once to use the loo, and got around 8+hours of good sleep finally! Take a gummy? Other sleep aid? Nope, was just getting 2-3 interrupted hours of sleep for the past month plus. Since I had to quit taking the gummies, my sleep issues are back.

I'm nearing the end of all the tests, etc. Mayo had me doing this last week. Most of my appointments left are consults. Monday I have the first around 7:45a, and hopefully it doesn't last long. On Friday, during one of the consults, I brought (again) about my lack of being able to sleep. I was told the Dr. I do my Zoom with is the one to ask about a prescription for Ambien. That's this call - and I will be asking!!

Either way, I hope that zoom is short, as my next appointment is at the Phx campus at 8:45a (about a 15-20 minute drive with regular traffic, but at that hour may still be rush hour. This is the Research appointment. I don't recall if I mentioned here, but they had snuck in a Research Consult last week. It has to do with a clinical study about how much energy/calories we use in a restful state (non-asleep, resting). I had gotten so frustrated with this person as her English was very heavy with a Slavic accent and was hard to hear let alone understand. So by the time I realized she was asking me to join this research clinical trial, as I was a candidate that met the criteria. I was frustrated, I said fine! Whatever! I just need to get this stuff done and get better! So now I am in a research study. Monday I do a calorimetry. It is laying down with a clear canopy placed over the head and upper torso, and just lay there and breath. Yeah, I don't know how that works, but it seemed simp[le enough, and if I have to show in person, I can try to do it on days I have another appointment there hopefully.

At 10:45 I have the important meeting. This one is to go over the results of the testing, etc. done over the past week, and tell us the Team recommendation to the Transplant Council. Also will tell me any time deferred from the List, or other stuff needed done prior to surgery (cavities fixed, current on shots, etc.). The Wife is coming to this one. Then it is sit until 12:45p to meet with a Nutritionist. I'm sure I won't like that discussion either.

Done with Mayo for the day, I have a 3:30p at my PCP to get all the update shots: Flu, Pneumonia, Meningitis, start Hep A and Hep B series, update my tetanus. I also will update her on Mayo's progress. 

Another issue Mayo requires is an 8-week Intensive Outpatient Program. Basically, a detox program, since my liver disease is alcohol related. Well, the problem is, in short, I don't need it. This is for people going through detox, or having problems staying sober, etc. I never had any of that, and I have been fine for 6-months. <eye roll> Requirement. So I found a place that isn't but about 8 miles from home, and they can do a majority, if not all, of the program online as well. I am having them verify insurance to see if all is covered (should be - transplant requirement) and they are to contact me late afternoon on Monday (my timeframe with the other appts.) and right now it sounds really good. Looks like quite a bit of meeting time, but that is going to happen anywhere. I also am required to do a minimum of 3-years of AA-type meetings, once a week. They gave me a link for a local group that only takes liver transplant-alcohol related as referrals from Mayo. It would be like a double support - for the surgery and recovery, and the AA portion! But they only meet Tuesdays 7p. I have VFW meetings 3 times a month on Tuesdays at 6:30p. But maybe I can find an online, or close to home AA group for another night, and the Tuesdays I don't have a meeting, do this support group. I emailed to verify they only meet Tuesdays and am waiting to hear.

Have to wait to call dentist - business hours. But I can schedule my cleaning right now so they can get their x-rays, and a quick basic exam of my mouth. Then I will schedule to have the bad teeth removed. I'm thinking two, but might luck out with 1 extraction, and a filled cavity. Otherwise they say they want me to do crowns - too expensive!

I'm getting all my things in a row. the IOP will keep me from getting on the list for the duration. I was informed of that. Trying to get it started this week so I can get on the list in 2-months.

Whew, that was tiring typing all that out. TTYL.

PeacE

What's Going On?

 Too much is going on, it feels like at times. This week especially. I feel like a teenager on his first day of Freshman class, at a school he has never been to before, with a class schedule so packed, he wonders how he is going to get from one point to the next, etc. without being late or missing it. Yeah. That's my appointment calendar. I will admit though, after the first two days, they really do have it together and a great process for the whole preliminary test process. Even though most days are split between the two campuses (about 20 minutes apart depending on traffic), almost all of them are 'grouped together. Example, Monday. Phoenix campus - had blood draw, urine sample, and I think it was three separate consults. Blood/urine were done at one floor of building 3, the consults were on floor 6 of building 3, and they went back to back basically, with even a break between, as we finished earlier than some other consults they do. Did that make sense? In my head it did, but re-reading it, I'm not sure....

So you saw what I had done Monday. I'll add that the blood work was 31 vials taken. Literally, it was draining. I was glad the rest of appointments were consults and not tests. They weighed me in at 246lbs. Tuesday started with my first appointment at 6:45am in Scottsdale - the further campus. Without looking at the schedule for exact order I had: Bone Density Exam, CT Carotid Angiogram (supposed to last up to 2 hours - done in 40 min), 2 more vials if blood taken, Ultrasound of the Carotids, a 6-hour break, travel to the Phoenix campus for a Echocardiogram at 6:25pm (slotted for 2 hours). Though we tried to see if they could get me in earlier for the ECHO, they weren't able to, but once I was in, they were able to get me done in about 40 mins. I guess they allot more time for different complications. We made it home around 7:30pm.

Today will be easy. I only have the Paracentesis scheduled today. I am not sure what will happen. I do not feel bloated like have by this time for so many weeks. When they go to U/S the ab today, I'll ask if I even need to drain today - that's how I am "feeling" but my body could just be used to it, and I still need some draining. Will find out in a couple hours. No plans otherwise for the day. Should rest for tomorrows adventures at Mayo. Thursday starts at 6am with an MRI of the abdomen, followed by appointments for chest x-ray, dental x-ray (dreading), Surgical Consult (Wife is taking part of the day off work to attend this one), travel to the Scottsdale campus, get an ECG, do a 6-minute Walk under observation, and hopefully done by 3pm for the day.

Monday and Tuesday I woke both days feeling good (for me) and though I dealt with nausea throughout Monday, and cramps on Tuesday, today is okay so far. Some cramps in one lower leg/foot, but otherwise okay so far. I think I may hit a Goodwill or two, and start looking for shorts. Currently I am wearing a 52 waist, and I feel like one of those weight-loss ads where they are holding out the waistband of their pants... yeah. The clown with suspenders at the circus (not my peanuts, not my monkeys, not my circus). Not sure what I am down to for size, but I figured I would start with a 48 and go down as needed. *IF* I am able to find some I like. Most times they are "old man golf shorts" where I prefer cargo shorts. Anyways....

I need to get going for the day.

PeacE

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