What I Want versus What Really Happens

 Sunday Morning Comin' Down .... oh, now I got to post a music vid....

Okay, I hope that earworm is gone for the day. But it is Sunday, and I woke early, but I feel pretty well rested. I did nothing yesterday but play games on the computer, then lay down for awhile (not sleeping), and repeat. Today is my pillbox refill for the week, and there are some fairly big changes. I went through it all, and updated my spreadsheet so I can print it out for the new PC I see on Tuesday. I'd rather not, as he is getting nothing but an update. But it is a "new doctor" at the location I go to, so it is what it is.

So seeing how this is kind of the first day of making sure my dosages are right with the changes that were done, will need to watch how I feel. Of course, everyone is supposed to watch me signs of HE (Encephalopathy) as it is possible to increase after the TIPS. General signs are confusion, lack of focus, altered character ... just to name a few. Supposed to watch for jaundice as well, but that has been watched for since day one.

Though I feel mentally fresh and awake, inside I still feel a bit fatigued - not sure why. Could be the body adjusting to the changes. If not gone in a couple days I will contact Mayo to check about it. 

For all of you that read here (all two of you) thanks for the prayers and support. Keep them coming until this whole transplant thing is done.

I'm off to do my quiet time.

PeacE

Well, Mark That Off the To-Do List

 It is Saturday and I am home. I actually came home yesterday, after the one night of observation as planned, I was just too tired to do much. I put my phone on do not disturb and had some naps, a little computer time, more naps, dinner, then bed. Slept good being in my own bed/pillows, and no waking up every couple of hours for BP check or whatever. Doctors said the procedure went very well, and was able to be done without any complications. The results of the procedure will take longer to see, as it has to do with the ascites build-up in the abdomen. They did drain 7L while I was under anesthesia, so am "starting dry". Two days is a bit early to tell if it is building up again as fast as before... I do have new Dr. orders to be able to get a para when I need one. 

It is just one of my characteristics that probably needs to change, but I am getting irritated at the Wife. A little. The seemingly constant question "Are you feeling ok?" or "Do you need anything?" is driving me nuts. I have restrictions - not to lift more than 10 pounds for 2-4 weeks, but no others that I know of. I'm not invalid. And I don't mind her asking, but it seems more frequent than it needs to be. Like I said, it's probably just me.

So that being said, I am going to be napping a bit this weekend, to rest up. Monday I start the cleansing procedure for a colonoscopy. I may need a good dinner this weekend. Where would I choose? Hmmmm....

No joke today...I'm too tired.

PeacE

T-Minus 24-Hours

 At this time tomorrow morning, I should be called back beyond those doors that block off the waiting area and lead into the workings of the hospital. Nothing I haven't done before (going through the door) for blood draws, CTs, MRIs, consults, and on and on. But this one is a little more involved. I am sure it will be wheelchair to a room, change into a gown, and from then on I am in a bed. Who doesn't want to lay in bed all day? Me ...

The first part of the procedure is going to be a normal routine for me. They will do a paracentesis to drain any excess abdominal ascites prior to the procedure. At some point after that, not sure of the timing, I'll be wheeled into an OR and knocked out. Then they insert a catheter through a vein in my neck, and guide it to the liver. They will create a channel between the Hepatic and Portal veins, with a mesh stent to keep it open. If things go fine, that's generally about it. 24-48 hours observation, then home. Average time of procedure: 2-3 hours. Once home I am on restrictions for lifting. I also have to watch out for further signs of Hepatic Encephalopathy, skin turning yellow (jaundice) and swollen legs. Since I have HE already, the medication I am on may cause it to not worsen.

So, sounds easy-peasy, right? I would think anyone gets a bit nervous though when they have to have a medical procedure done. I know I "accepted" whatever comes with this whole transplant process, and to do my best to meet demands of healthcare staff. But I can feel some anxiety starting already this morning. There will be lots of little prayers today, I am sure.

RM & PT are headed out of town today, through the weekend. With RM's birthday this past Sunday, and their anniversary coming up the 14th, PT *ALWAYS* wants to go somewhere out of town, just to do basically the same thing they do at home. My opinion, and not too far off mark, I am sure. I pray for their safe travels. Rm has asked at least twice about pushing their trip date off to another time, so she is able to be at Mayo for my procedure, and both times I told her no, to go. I do expect her at the actual transplant though.

My Older Sister called me yesterday. She wanted to apologize for not being able to make it for the procedure (she is in NM). I wasn't even expecting that ... even said so. She stated she will be here for my transplant though. She offered up prayers, which I gladly asked her to continue.

RM sent a BIM package home with my Wife yesterday. BIM is Because I'm Mom. She had mentioned something about it in her blog, but I had no idea what to expect. The jar of salsa was for the Youngest. But RM sent a box of some beef jerky (mmmm) and another box. I instantly went on alert. What would she send me that needs to be in a box? Well, I was busy when I got home last night (had Aux meeting) and forgot to even look in the box until this  morning. Now I believe it was last week, RM had sent me home with a study bible to help me work on my getting into the scripture and studying. It was one she had used before, but was not her favorite choice. I honestly have not had a chance to use it. Well, in this box she sent, it has a brand new, leather Jerimiah Study Bible. This one is her current favorite to use. As I read the daily devotional (she had sent that home last week as well) I followed up the verse in this study bible, just to see what it offers. I am impressed! I think this will be a great tool in my walk with God, and I am able to still use the other if I need clarification or something. Of course, RM included a personal, hand-written note, which made me tear up (but not cry!). Thanks Mom!

Well, today will be a bit busier than usual for me. I am getting a haircut, need to fuel up the car, need to wash said car (in and out), and have lunch. I think I am going to go to JTs Gyros over on 35th Ave & Greenway. I love their shwarma. Other than that, I'll just be grabbing a few things to put in a backpack to take. Tablet, phone, chargers, medical journal, note journal. Think I will forego the bibles for this trip.

And that's it...

I'm looking into essential oils. Which one is it that calms other people down? Chloroform? It's Chloroform isn't it?

PeacE

We Interrupt This Blog Post ...

 ... to take a pause and get some other things done. I have my CT today at about 12:50pm, which being in the middle of the day, really ruins things. I'll have time for my AA meeting at least. This morning I need to work on the minutes I have been putting off. So let's pause here until after the CT.

That was a lengthy pause. After the CT yesterday, the blog had slipped my mind completely. I think it has to do with doing it in the mornings and all. Either way ... CT went fine as far as I could tell. Lasted about an hour. I have the test results, but don't understand the mumbo-jumbo - even with the 'patient friendly' version. I wasn't whisked off anywhere, and they haven't told me anything negative, so that means I am good to go for Thursday. I swear they track me! I was home barely 10 minutes from Mayo when they called and went over the time schedule for food/water for Thursday. I'm going to be hungry coming out of it, but don't know what type of food I will eat (soup or solids). I think I'm okay with regular food as long as I feel up to it.

General VFW meeting tonight, but it is a special one for me. The Youngest finally okayed joining the Auxiliary!! Mainly it is to drive me to meetings, and be able to sit in the meeting versus out in the car. Besides, it might lead him to do some volunteering. At least he will get to see a portion of what I do for my "jobs" with the Post. I'm paying for his first year, as it is not terrible ($45). I printed off the app and my Dad's DD-214 last night to turn in with it all (I joined under my brother). Youngest will probably not go with me tonight, but will have to next month just to be inducted and receive his podium book.

Posting is going to be sporadic this week since I have the procedure on Thursday. Hopefully will be back on track by Saturday.

"When someone says "Stop!" I never know if it is in the name of love, Hammer Time, or if I am to collaborate and listen.

PeacE

The Battle Continues ...

 Yesterday I wrote about a small bit of Family Drama that is going on right now in my family. Let's just say, that after I posted things went even 'further South' and The Middle Son ended up at our house for the day and night. Later this morning, he'll ask the Youngest to drive him back so he is able to get his Jeep so that he will be able to make it to work tonight. Without getting into details, we are treating today more like a normal day, though he does not want to speak with his partner (at least right now) as he is still angry at them. Heck, I know I am, too! I found out why his partner texts everyone but myself and the Daughter - she doesn't like me. You know I don't have any worries about that, as I am definitely not a fan of this person, but it explains several incidences to me.

That being said, I am pushing it to a back burner and letting it sit and simmer. I spent a good part of the afternoon yesterday avoiding temptations. First I really wanted a drink. I had already attended my Home group meeting, and I was seriously debating just getting online into any meeting to take my mind off the wanting a drink. I did not attend another meeting, but I was able (with God's help) to push the thoughts away. Of course, while I am fighting this one, the cigarette desire kicked in as well, so I was getting double-whammied. It all got kicked away, and this morning, I am able to sit here and think of both without craving it.

Tomorrow is my only appointment I have this week, and it is a paracentesis at 1pm. That'll be about 2 hours long. They'll drain 10 liters, leave fluid in there, get me three bags of albumin, and send me on my way. I have a para scheduled for next Wednesday as well. Then it is the week of the TIPS procedure. So two weeks out... I want all the best results that this is supposed to provide, but I will take ANY good it could help with. Fewer paras. more time between them, less fluid build-up. I was notified through the portal that I had new test results in, so I went and looked. It only listed a NEGATIVE for the alcohol test. I thought this drug test was to include the nicotine and THC as well? I don't know, but there was only this one result on the report. I think I should message the Team and see when are they going to test for that, as it is the factor of getting on the list. It's been almost 3 weeks since I stopped smoking.

Sounds like RM is going to have a good day today. She is actually going into the office (across town) as one of the execs is retiring. She is bringing some food, plus plates, cups, etc. She'll help with set up and clean up. And she will socialize!! Free to talk to co-workers without PT hanging on her every conversation. I'm happy for her. I try each day to send her a 'Have a great day!' text, to help bolster her for the day, and I know it helps me when she wishes the same back. One of these days I need to search through her tags on her blog for issues that she may have more insight on that I am dealing with as well.

Quiet time is done this morning. The testing have been done (118/71, 71 bpm, 118 glucose) and the pills swallowed with the one liquid prescription I have to take. I guess I am somewhat free until closer to 11am which is my meeting time.

Have a great day!

PeacE

It's A Brand New Day ...

 Today starts a fresh round of Life. Well, at least that is how I am looking at it. I may share too much on here at times, but when it comes to my liver transplant, maybe someone else going through similar will take inspiration from my words - as if I had any readers.

Tuesday I met with the IR for a consult at Mayo. This was specifically to go over the TIPS procedure, the pros/cons of it. After discussion with the IR doctor, and a few questions, I opted to do the procedure. The Wife and I had talked about this back in November, to look at as possible assistance. Basically, it is a bypass to take the pressure of backed up blood flow that the liver cannot handle and redirect it. It is supposed to reduce, if not eliminate, the build-up of the ascites in the abdomen. In my support groups, I have heard some guys say it greatly decreased the number of times they had to do paracentesis and others said they didn't have to do any at all while they waited for their transplant. I'm not aiming high but I would truly like being able to not do a para every week. If I could get it to once a month or longer, it would be much easier to deal with. Either way, the TIPS stays in until the transplant. I have a CT of the Abdomen, then a couple days later the procedure. Oh, and finally scheduled the colonoscopy for late August (like you wanted to know that crap - see what I did there). Oh! And they drained 10L plus said there was still some fluid in there. Sigh.

Brand new day. Brand new start. It's Day One. I smoked the last cigarette I had last night. No longer are there any here at home, or in my car. All I need to do is not buy them. Today I have nothing on my calendar and told the Wife I was not going ANYWHERE today, to reduce the want to stop and get more. She says she has a couple prescriptions to be picked up. Sigh. I probably have yet another one to get as well. But I can use the drive-thru pick up versus going inside. Even if I went inside, I usually pay at the pharmacy, so do not even have to go to the front counter (and see cigarettes).

Friday is our last VFW Riders dinner for awhile. We voted to go quarterly now, as the same 6 or so people were the ones doing it all, all the time. We are getting burned out. So it will be shredded chicken or pork sandwich, Cole slaw, and I am thinking of getting a couple tubs of southern style potato salad. 

Last night as the Wife and I lay in bed doing our phone/tablet or whatevers, I turned to her and asked, I'm supposed to tell you if I am feeling things (in regards to medical especially). She said of course, so I did. I felt ... off. I know when I have a para done, that for a couple days at least I do go through an adjustment: organs adjusting to where they should be, feeling some fatigue and other tiredness, even sometimes a lack of desire to do anything that involves moving around. But this was different. It started early evening, and went through at least until I fell asleep. Still not sure what it was, but at least she knew about it in case something worse happened. I have got to get better at communicating when I do not feel right, or well. This morning I was up at 5:10a and as far as I can tell, feel normal. Whatever I felt last night is gone. I was going to be a bit worried if it persisted through a sleep cycle. 

Alrighty then. I think I over-shared too much today. Oh well. May it live forever on in the internet universe.

PeacE