I Got the Call, Well, a Call Anyways

 Update from yesterday... My car appointment is for 5/26, not 5/2. Not that you care, but RM might.

Yesterday I did do a paracentesis. Drained 6L (two weeks accumulation - almost 13lbs). I am going to try to start going longer periods if I can, since I seem to not be producing the ascites as much as before. I still set my appointments for every week - just cancel a day or so before if I don't need.

Did the payment (all up front of course) for the IOP, and scheduled a virtual (online) Intake at 12pm today. I have already emailed them asking for my link to the appointment, and if I needed to download something more than Teams or Zoom. 8:30a and still not heard yet. I'll start calling at 10 if no email reply.

The camera I ordered came in yesterday evening. Took a bit to get working right, but according to my tests, the mic and picture are good, and I have the backdrop in program to "hide" the view behind me. I am ready for all my online stuff now (I hope). Since I am doing so much online, I spent a nice dollar on it. This morning I ordered a pill box/case. I know I needed a bigger one than the one I have here, as the after surgery meds will be numerous. This one is a week long, but each day is only split into 2 halves, is removable to carry if needed. I think it will work fine.

Still looking for a car. Never heard back from the best offer I have seen/heard yet. I wonder if it was sold already. Wife's co-worker is the one she has to go through to find out.

Til next time....

PeacE

Its Para Day!

 For me, today is Para day - the time for the weekly drainage of ascites from my abdomen. Last week there was only about a liter of fluid, and we all agreed no need to drain. But this week, I know we are doing some. I have felt the pressure slowly building the past 2-3 days, and can feel it slosh around every now and then. Hopefully won't be a full 10 Liters, and then leaving some as that is the max darin amount per the Doctor.

I had received a safety recall on my Rav4 a few days ago. Yesterday I looked it up. A sensor in the front passenger seat had many of them improperly made, and they may not work correctly in detecting a passenger weight, thus causing an airbag to fail to deploy. Eh. Kind of important I guess. I went to to an online scheduling of an appointment for a dealership out near RM's. Set it up for tomorrow at 7am, have RM pick me up, spend part of the day there until they call, get dropped off, and home we go. Well, Toyota called back. They have to order the part in, and the earliest I could get it in for the replacement is May 2. So the appointment was changed to that date at 7am. I'm sure RM is up to the same arrangement as long as I remind her.

I signed documents and paid too much to get the IOP program started. I have to do a video intake tomorrow. It is a three-hour session, and being done 'virtually' - as will ALL the sessions I have to do (about 3 hours/day, 3 days/week for 8 weeks). It will be fun scheduling things around this big block of time during the week, but I will make it happen.

I attended an online AA meeting last night. It is the Twice Gifted group that consists of people that have gone/are going to Mayo for a Liver transplant due to alcoholism. A double-support group if you will. It was a great meeting that lasted about an hour. In talking to the one of the lead people, he mentioned my video picture was pretty choppy looking, and the camera kept going out of focus if I were to move more than an inch. Lastly that the mic just wasn't good at picking up my voice - it cut in and out and was very faint. I explained I was on a cheap laptop, but would resolve the situation.

So, I went shopping. Online. Amazon. Found a nice camera/mic setup for the PC/Laptop, with good picture rating and sound quality - trust me, I read PLENTY of reviews on these things last night. The new one is to arrive here late this morning, while I am at Para most likely. I will set it up tonight for my Intake tomorrow. This camera rig was a bit pricey (to me) at $50, versus the $15 models I started looking at. But I figured it I was doing AA meeting virtually, support groups, Dr. appointments, plus this 8-week IOP course - ALL ONLINE - it is a good investment.

Alrighty, I guess I need to get some other stuff done prior to heading to the hospital. I am almost done with our taxes - trying to calculate medical last year is a BITCH! I'm hoping to be like RM, in that I write the info down as it happens, and I have started doing that a couple months ago - so I don't get lost in all the receipts and mess. Excel is becoming a good friend, and I am starting to learn more and more about it as I test if it can do what I want in format, etc. Shout out to Hoosierboy (Joe) at 'Fat in Indiana' for the tip on the emails from Miss Excel. I have read a couple, and just those little tidbits she shares in the mail have helped!! Thank you good sir! Shameless plug: Joe has a couple books for you to get and read!! Here they are: "

Hoosier Flats: A Novel of the Greatest Generation and 

Suburban Moon: The Autobiography of Sam Wyatt (Hoosier Flats Book 2) 

Well, I think that does it for me.

PeacE

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