6/20/2016 - Liver Levels & Partial Staple Removal

Today was the first time I had been in the Hospital since last week.  It was the longest amount of time I had gone without seeing a doctor and checking my blood levels.  I was excited and slightly nervous about this

Twice in the past week, I had gotten splitting headaches and slept a lot.  I just wanted to be a dark, cold, and quiet room.  Since you know I have twins, quiet is not normally an option.  Thank the lord "Tita Shelly" is here to help Tessa.  I was able to crawl back into my room, put a pillow over my head, and crash.  This morning, I felt much better but I had decided to mention it at my latest check-up.

The bloodwork came back and I was "abnormally normal".  That's good!  She said it was odd to have most of my labwork look so normal.  For instance, my platelet count (due to the new liver) was actually in the "acceptable range".  With my old liver, I would consistently see platelet counts of 60-90k.  (Normal is 150k - 400k).  I don't ever recall having a count over 100k since my liver had deteriorated.

My ALT and AST, both of which measure the liver function, were in the normal ranges as well.  This was also a relief after the previous weeks where there was some concern if the liver was rejecting because of some higher levels.  This was not the case today, phew!

I did get an e-mail later in the day where I was told that my Prograff levels (Prograff is the drug that prevents rejection) was very high and this can sometimes cause headaches.  I was instructed to skip my evening dosage and the dosage the next morning and then resume with 1mg less (so 6mg in total) of the Prograff.  I'm going to follow the doctors orders and then go back in on Thursday, 6/23 for more blood work and hopefully, I'm back in line with where they want me to be.  I don't think I should be too concerned here as they told me there is some gaming of the levels that occurs with all patients.  They also told me I needed to take another magnesium pill as I was low in magnesium (usually due to the Prograff).  This will take me to 4 total, 2 in the morning, two for dinner.

Now, we know you're mostly reading because you want to hear about the staples and see pictures, right?  Well, I have 50 staples in total (I keep wanting to sing 50 nifty United States and 13 original colonies....).  I keep wondering if they have the staples in packs of 10 or packs of 25.  I mean, 50 is such a nice even number.

Today they had decided to remove half of them, so the pulled roughly 25 out.  There were a couple that were on my old scar from when I had my kidney removed in 1987 so they were more painful and I had her leave them in until my next visit, at my request.  Why pull staples today if I can delay them until next week!!!

What exactly are you looking at?  See below:

6/7/2016 - The Before and Afters - Scars & Staples

Prior to my transplant I had some pretty awesome scars.  Most were from the Wilms Tumor removal that was attached to my right kidney when I was 7 (or peripheral operations for it).  Then, when I was found to have Basel Cell carcinoma, they had to remove several moles.  I digress, the point was to set the expectations of my "before" shots so then you can compare with my "after" shots.  

Either way, lets just say that I often make people uncomfortable when I play soccer shirts vs skins or when I'm in a swimming pool and it will likely be even more so now.....of course it doesn't bother me in the least and usually makes a fine conversation starter or I can kill conversations.

Example of a conversation starter:

Random A: "Wow, that's a huge scar...is there a story behind it?"

Me: "Kidney taken out from cancer when I was 7"

Random A: "No kidding, hey, I had x, y, z cancer and so did my friend...."

Example of conversation stopper:

Random B: "What the hell happened to you?"

Me: "Gang fight in Florida, I was slashed pretty bad." [Flaring my nostrils when talking]

Random B: "That sucks" [Backing up to pull a fade away like nothing ever happened]

<<Insert Before Pics, will hopefully update when I can locate them>>

Obviously thrilled, but you can see part of the scar and staples (50 staples in total in addition to internal "dissoluble stitches")

You can see the overlap of the scars the tried to keep at a minimum.  This was after discharge and the drains had been pulled out (Gauze covering drain holes)

What's under the gauze you wonder?  Oh, I'll show you that too....it's where a vampire bit me

I'd like to say they shaved my chest, but I'm not really that hairy so they didn't do much there. They did shave my left armpit and my nether-regions.  Actually not sure why unless they just like to mess with me because the foley they could have put in either way. (Don't click on foley link while eating).

6/4/2016 - The White Discharge

As gross as the sound of that is, it made me laugh.

On Saturday June 4th, I was slated to be discharged (read the previous post).  I had blood taken during the 5am blood-work checks prior to residents rounds, to see what my liver enzyme and liver rejection levels were.  Both appeared ok but they did tweak my pill list to add another milligram of Prograf (one more pill, isn't the end of the world when you're already taking so many),  The attending Physician made rounds and signed that it was OK for me to head home.  Even though he did this early in the day (~9am), I knew it would be after 3pm when discharged.  Turns out, it was actually 7pm and right in the middle of the shift change for any of the 12 hour staffers (which is many of the SICU folks who were caring for me).

I still was able to have all 3 meals in the hospital.  We were joking one day, because I ate what my good friend Blair referred to as "gray beef" for dinner.  I think I was making them sick but I was so hungry I just shoveled anything in my mouth that I could.

ICU policy states that you have to have at least two viable IVs in at all times in case things go bad.  The very last step of discharge is to pull the IVs.  I had a couple of the usual needles in and then they had the gauge a Hi-C juice box drink straw sized IVs.  In these cases, they're long plastic tubes in your veins and they literally leave a hole in your arm or neck or wherever they're pulled out.  You can see below the arm hair they took off then they pulled this guy out.  Felt super good after it was out though!

Keeping the hole under pressure and elevated to make sure it's not gonna bleed.

One of the harder things that we had to do was pull off my wedding band when I went under.  I really wanted to keep it on but two reasons why they did not allow it.  1)  Your hands swell when you have all this trauma and they pump you full of fluids and 2) They want to scrub you in and make sure no germs are anywhere on you.  So, after the swelling was down and I was ready for discharge, the Ladies of the ICU (the wives of the many men in there) would all wear rings around their necklaces.  It was like the Bad Luck Club (my twist on the Joy Luck Club).

Luckily, she agreed to marry me again and I got my ring back

Ring back on, and back down to my weight from Senior year in High School, 180lbs.  

Also saying goodbye to my green morphine button.  I could push it every 10 mins, it would push a drug drip right into my mainline.  It was pretty good, helped relax me.  I liked this much better than the other narcotics they would give me later that made the room feel like it was a giant moving ceiling of Tetris blocks.

6/3/2016 - The New Liver Orientation & The Juicebox

On Thursday the 2nd, during the early morning rounds, I was told that I might be discharged on Friday the 3rd of June.

Accomplishments to that point:
1) I had taken no blood during transplant (very rare occurrence given all the medical problems people have driving them to transplant)
2) I had been able to fart (which every woman who has delivered via C-section will tell you means you can now have solid foods... a hallelujah moment)
3) I had been able to get to my feet (although I was moving at the speed of an elderly person in a walker across a gravel road).

One more condition that would have to met for me to go home, Tessa and I would have to take a 1 hour class on new organ care.  They would discuss the copious new drugs I would be on, their side effects, their dosages. What to do if I missed a dose and was under or over 4 hours from the time I was supposed to take my meds.

Note this is only page 1, you get the idea

Additionally, I would learn what diet I should follow and specifically to avoid grapefruit (toxic to liver and interferes with any liver filtered meds).  I should stay away from shell-fish, raw-fish, and under cooked meats.

They told me they didn't have any rooms in the "Step down" unit in 6 BLES and that I was the best case they had seen in a long while.  Both Tessa and I felt very uneasy, after all, I could still barely walk (I was wheeled to my drug class), and I was still having my medicines changed daily after 5:00am bloodwork came back to fine tune my reaction to the meds.  Our concern was that, we didn't feel we know how to care for me at home yet and that we didn't have access to the daily labs.  I still had a Jackson-Pratt Drain in my right side that I dubbed "The Juicebox" which looked like one of those grenades full of Fruit Juice you would buy on Bourbon street in New Orleans.  Since we disagreed with the Friday discharge we formulated some talking points and were going to be talking to the doctors in the morning.

This was a pano of my room for the duration of my hospital recovery (Surgical Intensive Care Unit)

They wanted Friday, June 3rd, discharge and we were thinking Sunday / Monday.  When they made their next rounds, we agreed to split the difference.  We would both target a post 3pm Saturday June 4th discharge.

Over the next 24 hours, Tessa learned how to measure and empty fluid from my JP drain, how to dress it, and all about meds.  This would at least position us to be more comfortable if we had to head home in the current state (assuming no day to day improvement or drain removal).

6/2/2016 - An update from A bed with no sleep number

This is Whitey from his phone.  I'm not sure typing from the ICU on your phone is recommended but I want to let everyone in on the latest.

Last couple of days have been physically and mentally draining.  I can't wish this hardship on anyone.  My body has held up pretty well from everything as best as I can tell.  I've got some heavily bruised track marks in my arms so I may to push off any formal gala invitations for a couple of months.  (Trying here).  I have found that my glowing ET finger (from its connected pulse/oxygen sensor) makes a pretty suitable bed urinal night light so for for those with frequent bathroom breaks at night and potential sleep apnea, it could be a good tool for you.

Now, let me start apologizing.  I have kept my phone off nearly this whole time because it's hard for me to deal with everything as is.  I do try to FaceTime my kids (and try not to scare them when I do).  I've not been getting much sleep so I've been grumpy to my family especially my wife which I apologize profusely for.  I know what I'm going through but I know she has to glue our whole family together and still deal with me, a superwoman feat.  She's been doing great!

Naturally, I need to thank the outpouring of support of every type.  We read all messages even if we don't respond.  I know on the Homefront the meals have helped alleviate stress, and your generous contribution certainly makes me focus more on my recovery and worry less about bills / insurance / parking / meals, etc.

As of today, I was able to get out of bed yesterday evening and walk an early lap around the ICU.  Apparently people take way longer to respond as favorably (toot toot).  There is currently a "red light code" which means all available beds are at 100% capacity.  If a bed becomes available today up on 6 BLES, they will likely move me.  This would be great because the ICU care, while excellent, is high touch and monitor but I feel like  I need a solid nights sleep.

As of 6am this morning, that's the update I have.

My many thanks again for continued prayers, outreach, and support.

Lovingly - The Figther