Resigned

 I think I have come to grips with many things over the past handful of months. There was all that uncertainty of health when all of this started. Then it was if my "affairs" were in order, and was I ready to die (yeah, that extreme). I struggled through those, and came to terms with it, no I just have to accept the transplant issue.

The two or so conversations I have had by phone with Mayo, I get the impression that I may not qualify for the transplant list, therefore, would just be treated the rest of my life for symptoms. Either that, or they sound jubilant to have another one under the knife... I jest. I know itis in their job to sound positive and upbeat about everything, including the dead horse.

Liver Doc said he is "stepping back" and letting Mayo Clinic take lead on my treatment and medications. I'm guessing they are much more trained for this than he is. I have an online 'Educational Meet' Mayo has for me on the 17th, and I am waiting them to contact me regarding dates, times, locations for the tests the week of the 23rd. I did have to designate 2 caregivers in my interview, so I picked the Wife and the Youngest, as they already live here. Youngest will have to attend a caregiver class at some point prior to the transplant (if I am getting one). He will then be in charge of driving me to all appointments, labs, etc. Hoping they have facilities/doctors affiliated on this side of town so I don't have to go to Scottsdale, but will do what I need to do.

Saw the Kidney Doc yesterday. He left it for regular three months lab workup and visit, to be sure the kidneys stay in good shape (they are now). He sounded like the transplant was already considered being done, so now I have no clue if I will qualify through my preliminary tests. So for now, Paras each week until I do the Mayo testing. Trust me, I wanted faster movement on this, too.

Still haven't heard from Disability, but it has not been 60 days min. yet. It could take longer, though my friend gave the impression it shouldn't.

Think I am off to get some hairs cut and hang at the Post. I did my Agenda today, so I accomplished something at least.

PeacE

Dive Right In

 It's Thursday. I am up early today - on purpose. I have the Liver Doc today at an early hour. Hopefully will find out if there is a game plan we are going to use, or if we are winging it.

Mayo Clinic had their phone interview on Tuesday. I will be doing some tests/appointments starting the week of 3/23 and be done within that one week. Gave me much more I am working over in my head.

With that said, you can imagine where my thoughts are this morning...

PeacE

Just Got Home ....

 ...from all the errands/appointments I had today. Well, the important ones. I still have a couple errands I could do, but I was tired and just didn't feel like being out in public. Went to the Kidney Dr's office, as I was scheduled for a blood draw at 8:30am. I was a bit concerned, as I had booked my Para today at 9a, though luckily, the hospital is literally right across the street from this doctor. But I went in early (7:40am) to see if I could get in and out faster - after all, it is just a blood draw. Well, as usual in my life, there has to be drama, or a snafu, or who knows what (I shouldn't tempt fate). The office had me for 8am instead (bonus!) so I was on time. However, the lab tech that comes in doesn't arrive until 8am, and then she has to prep her items for the day. Final verdict, I was first draw, and out the door by 8:20am and headed across the street.

Last week I had mentioned the standing doctors orders regarding my paracentesis. Ultrasound wanted clarification, as one line said drain max possible amount, followed by a line that said 10L max. So last week I took a copy to the Liver Dr's, explained what was going on, and the Doc called me late in the week. After conferring with another doctor there, they felt it best to do a 10L max drain from now on at this time. Albumin treatment to follow, based on amount drained. So the first thoughts were from the Wife and I both that the extra fluid left, would it accumulate faster, resulting in having to go more often, and possibly through the ER instead of a weekly appointment? One of the questions we have for the Liver Doc when I see him Thursday. The Wife will be going with to help me out with all the medical jargon, and to remember what to ask (if I didn't write it down somewhere). So they only drained 10L today, and I received three bottles of the albumin.

My PCP's office had called last week as well about some lab work. When at my last appointment in January, I had done one, and when my PCP called and went over the results, she asked for me to go back in and do one more, as there was one other thing she wanted to check. I wrote it as doing it like a week before my next appointment (in April) and explained that to the office. They went back to the PCP and no, she wants it sooner. So since I was fasting already, gave blood, got drained, I debated going to the PCP office, where I can just walk in for blood work. No. Not happening. I was nauseous as I needed some food. So I went to Jimmy Johns and had a regular tuna. Then off to the pub. I had a small pitcher of cola, and decided I needed to force reading back into my regime. 

Since September, I just have not been able to keep my concentration while trying to read. I found myself re-reading lines, sometimes pages, because I forgot what was going on. This from a guy that has like three books going on at a time... forgetting is not an option! But over the last week, I saw (and got) quite a few ebooks of series I have been reading, and I want to know what happens next, so I hunkered down today. I actually read about 4 chapters without any issues, before I put the book away. Only because I decided I was going to head home. I didn't feel like sitting there drinking soda for a three more hours before heading to the Post. So I just went home. But now I know I don't seem to have the same reading issues as before, it time to get back on track!

Oh! And even though they didn't drain ALL the fluid, so there is still some of that fluid weight, but I lost another pound over all....

PeacE

No Rest For The Wicked ....

 ... since I am not getting any sleep tonight. Sigh.

Here it is Thursday and I feel like I have a full day on my plate. Monday I had 13.8 liters drained, my Albumin treatment, did the bloodwork at the Liver Dr.'s office, and still made it to the Post for the Riders meeting - that only 5 of us were in attendance. Sigh. RM, so you know, 3/13 we are doing the soup night again.

Tuesday I woke (after a long night of not sleeping much) to just feeling miserable. Seems the day following a paracentesis, I always feel this way. Adjustment of the organs causes some of the discomfort and mild pain. They have to slide back into their original places since being displaced by all the fluid. So I slept a good part of the day, which I needed to catch up on. Nausea came and went throughout the day. Hardly ate. Monday I had weighed myself and I am down to 256 lbs. now. That's overall good, just not how I got there. Would love to drop another 20, and then hold fairly steady....

Wednesday, I spent the afternoon up at the pub, working on the minutes from the Riders meeting. I was already a day late getting it done (I had said I would have them the next day but didn't feel well). Got that sent to the Int. Dir. to review, he approved, and out they went to Riders tonight once I got home around 8pm. Then I started in on a project to collect Rider stats for meetings, rides, events, etc. They count as monthly activity to the District and State, and I presume Nat'l level as well. Our previous director was a Google Docs lover. Why? Does anyone really know why? I don't care for it. I have become more and more for Office, so I fixed/created our Roster/Attendance workbook into my OneDrive. Working on the sharing bit. Then we had a link that would take us into a Google Doc to answer questions about an event we are signing in for. This data is them collected and dumped into a spreadsheet, so we can easily track who does what, etc. etc. That is turning into a chore. Even using CoPilot, right now it requires much more typing and time than I want to spend on it. However, I may find another way to do it, so that is still in progress.

Thursday plans: Yesterday I set up with Kars4Kids to come get the Middle Son's car, finally. It took months to get him over here to sign the title at the DMV so we could have it notarized. Then I gave Youngest a couple weeks to get the remaining personal stuff, and mostly all the trash, out of said car. They reached out wanting to pick it up this evening, but I was not home, and the title/keys were not in the car. I'll put them in there first thing this morning and leave it unlocked for the tow. 

I have a feeling the better part of the day is going to be waiting on CVS. They are supposed to get that special prescription in at the store location near me today. The office said that the stores do not always call the people when the 'scripts come in, so I will wait until after 1pm, then head up there and see if it came in.

No other plans from that for today. I did my readings this morning (BP and Glucose) and all are in the good range. Time to take what meds I do have here. Then grab a bite of something for breakfast. I forgot to pick up milk, so I have a sticky here with that note taped to my phone, so I don't forget.

....and I am outta here!

PeacE

I'm Already Tired ...

 Today is a little more busier than most days for me. Got yet another paracentesis scheduled for this morning at 11a, The way I am feeling right now is that they are going to get quite a bit today. The pressure just feels worse than normal, or at least how it has felt that past few weeks. Will be making sure I get my albumin treatment as well. Then off to the Liver Doc's to have blood drawn for labs - appointment is the 26th. Then I have some off time before my Riders meeting at 6:30p. Yeah, I actually had calendar events today!

I just don't feel like writing today.

PeacE

Running Around

 Saturday. That's the day most people that work 9-5 jobs start in on catching up on rest, household chores, shopping, and all that. Not much different than a regular day for me, but <shrug> whatever. 

Got up about 9 - sleep at least 4 hours - and headed out solo to run "errands". Went by the car wash I have the monthly through, and they have been closed all this last week, and still today. I noticed their sign is down. Closed? Well, I went over to the only other location they have (it wasn't one of the large chains) at 5St & Union Hills and they verified that the one I go to was now closed. So I cancelled the monthly account I had with them. Then I headed back over to Cobblestone @ 35th Ave & T-bird and signed up for their basic wash monthly deal. I had to wait awhile to get assistance there, so today I got a free Platinum wash (their highest) for free, as I had to wait. No different than a regular one, but I'll take it.

Hit p the Walgreens as the Wife and I both had at least one prescription ready each. I did get an OTC anti-nausea medication that the Pharmacist should not interact with my meds, and it is aspirin-free, so should be okay for the liver. I'll check with my Liver Doc when I see him to verify 100%, but either way, right now I am using it. The last three days have been hell with the bouts of sickness, not being able to throw up but still dry heave, the discomfort of it all. I popped 4 of this OTC and within 20 minutes was feeling fine again. It says I can take up to 24 tablets a day... I'll carry some extras with me for now, but need to figure how long it lasts, or did the nausea go away?

Then it was home to drop the drugs off. That, and I really had to go pee. I set up a Home Depot account (will do one for Lowes sometime soon I am sure as well - we shop at both). The front bathroom needs a new flapper. I don't feel like walking around the store, so I made the account so I can do pick-up. Waiting now for the email saying it is ready, then I will head there to pick up. Then it will be off to Sprouts, as they have the Grillo's pickle de Gallo there. I'll get a couple tubs, and see if they have some regular salsa, non-chunky style for the Youngest. Need that to finish off the leftover eggs ol'e. BTW, RM, I forgot to actually cut up the sausage links, or to even get them out for when I made the Ol'e. So I will have to try that next time when I have more of the properly needed ingredients (read: baking powder). Then I will probably head down to the Post like most Saturdays. Not sure just yet.

Going to try to replace our hall light unit this weekend. The old one was a 'stand-alone', and the switch was a turn one on the bottom of this wall sconce-type light. No, no light switch for this one. I have the old one dangling from the wall right now, and the new one is here, I just need to unhook the old, hook up the new one, and secure to the wall. Then be done with it.

Fun Day...

PeacE

Working A Post A Day Early

 Trying to get the jump on Friday, so I am writing this post that will sit here until morning. Previous post was so chock-full of ramblings, I didn't want to add more to it. Saved it for today.

Let's bitch about prescriptions, insurance, medical facilities and doctors (again, and again, and again). 

Update: Last Friday, the gal from the Liver Doc called, I relayed the insurance company message for the office to  'send the prescription to the pharmacy'. So the gal went to CVS Special Prescription Unit (who'd ever thought this was a thing) and they called me Wednesday. Seems they got the request, and now the insurance wants me to call them before they will give the release. Sigh. Not again. Please.

I don't recall exactly what the insurance company actually needed from me, but after talking to them, they released it. CVS was supposed to call me back on Thursday, to get the information of what the insurance informed me. at 4:55pm I realized the lady from CVS had not called, so I called the number she had called from. I got to talk to a nice rep named Joe (aren't all cool guys named Joe, eh Hoosierboy?) and ... let us just say, this is a shit-show. 

So, the basics of how this works, CVS Spec. Presc. Unit (SPU) sends the prescription to my house (not like a normal pick-up in store) by UPS - which means I need to sign for it. I could set a specific day of the week between Tues-Fri for delivery, but I never know when I will be home to sign. They will now ship the prescription to the CVS near me, who will then call me and say it is ready. When I go in to the pharmacy, I'll have to sign there to say I received it. That works!! And it will occur every month (or until I am off it, whatever). He even said he shows no co-pay due on it, even though the insurance rep had given me a Manufacturer coupon to drop the cost, so even better. Now to see when I can get it next week. Only almost 4 weeks without it....

That being said, empty calendar for the weekend. Monday have a paracentesis, and also bloodwork to be drawn at the Liver Dr's office, and my Riders meeting that evening. Maybe this weekend I will post more about the new hobbies and learning opportunities I am looking at.... stay tuned!

UPDATE: The eggs ol'e went over okay. I did a couple ingredient substitutions (small curd cottage cheese instead of creamed, and I couldn't find the baking powder to buy, or at home, so left it out). So it didn't rise up in the pan as it should have. I found it quite bland to taste, so needed to add some hot sauce to it. Wife and Youngest said it was fine. I wasn't expecting it to be a super-wonderful, never-to-be-eaten again dinner, but if they at least like it, I can make it again later. I will admit, I had cut it into 'pieces' in the pan, and I only had one - before my body decided to reject it, and threw it up. I had fought with nausea all day, and still a bit this morning. My Sister and BIL are moving to New Mexico and leave this Sunday. They are doing a yard sale today and tomorrow, to get as rid as much as they don't have to take. I'll be headed that way in about an hour or so. Called Sis yesterday and said I would be by to look at tools the BIL doesn't need anymore, and have a chance to say bye. They will be gone the better part of two years, before possibly returning here.

Last night, at dinner and the rest of the night, that nausea was bad. I think I am going to stop at Walgreens on the way to Sis' to see if they recommend an OTC for nausea, brought on as a side effect of medication. At least, I'm pretty sure it is considering at least three have it listed. Anyways, I need to get off here and get a few things done before I leave.

PeacE