09/02/2016 - Lower my Pills!

I keep having some "Lower my bills" slogan in my head...must have seen it on the side of a metro-bus or something.  So, just ran with it to name this blog post....

I had an 8:45am lab appointment and a 9am office visit on Friday 9/2.

I was told that they would look at my blood levels taken that morning, and e-mail me later that day if I could reduce any further pills.  I had complained a little about how uneasy my stomach was with all the magnesium that they had me taking so I was hoping to drop down on the 5 pills I took daily there.

Later that day, the good news came in an e-mail:

Awesome, Miss <Miss.Really.Awesome@gunet.georgetown.edu>
Sep 2 (3 days ago)

to me, Tessa 
Mr and Mrs White-

Great to see your both today.  We can decrease your cellcept to 500mg twice  a day and your tacrolimus to 3mg twice a day. We can also go down on your Mag Oxide to just two in the AM and two in the PM.  So skip the lunchtime dose.

We will get labs as planned.

Thanks,

Miss Awesome, ANP-BC
Post Liver Transplant Nurse Practitioner
Georgetown University Transplant Institute


Translated to English that means I can reduce my CellCept (anti rejection drug) to take 4 pills a day rather than 8 pills a day.  I can also decrease my Tacrolimus (a different anti rejection drug) from 7 pills a day down to 6 pills a day.

Since I'm a numbers guy and you're reading, in the last week, I'm down to:
8am - From 14 pills to 8 Pills
2pm - from 1 pill to no pills, skip all together
8pm - From 9 pills to 7 Pills

So from 24 pills to 15 pills in a week, that's a pretty stellar decrease.

8pm Pills:

Toot-Toot

Looking forward over the next year or so, I hope to drop my cell-cept altogether and only maybe be on my Tacrolimus.  All of these drugs are hard on my single kidney so my ultimate goal would be to read in the New York Times about some breakthrough where they can find a way to stop taking pills and still have the liver perform and not reject in my body.  I really believe that this is possible and hope it's not more than 20 years away.  The biggest problem for me is that I already only have a single kidney and so if these drugs really beat my kidney up, I might need a new one of those too and that's too daunting of a prospect to think about so I'd much rather think that science comes up with some shortcut breakthrough....

09/01/2016 - Staple Removal Bonus Photos

Some recent previously unpublished staple removal pics were uncovered from the vault.  Since you've been a loyal follower, I'll either reward or punish you (depending on if you like pics like this).  Commentary is all in the 6/20-ish blog posts so you get the story there, these are just the pics.

08/29/2016 - My 3 Month Anniversary

My liver just turned 3!  The 3 month liver birthday marker is significant for a number of reasons.  I have a meeting with my incredibly responsive nurse practitioner to discuss my progress and possibilities of drug reductions.

On the 29th, I was told that I could discontinue the following pills three pills:
1) Bactrim - 1 pill at 8am - antibiotics used to treat or prevent infections.
2) Valganciclovir - 1 pill at 8am - an antiviral medication used to treat cytomegalovirus infections.
3) Pantoprazole - 1 pill at 8am -  Treats gastroesophageal reflux disease and high levels of stomach acid.

Now, three pills might not sound like a lot however, that's 10% of the pills I take and reduced my morning 8am pill count from 14 to 11.  Now that's good progress (think baby steps).

08/08/2016 - First family vacation... in a long while

I'm really starting to completely feel like myself again.  I know it's been a while since I posted because the family and I had our first taste of real freedom and took about two weeks and spent it in rural Indiana.  It was fantastic for everyone.  We had been on a short leash, close to the hospital, always waiting for that fateful call.  After the operation, I was hanging close for follow-up appointments, and labwork.

My awesome nurse practitioner, told me that I was to come in every two weeks, with labs at a local lab on the off-weeks (so they still had weekly labs).  So, we took a looks to see if we'd be able to pull off a trip to visit my cousin about 45 mins North of Evansville and about 45 mins west of Louisville (Pronounce Loo-ah-vull for all you non-natives).  The specific area we were visiting was Gentryville, IN. I pulled up the lab companies website, and found a lab that was about 45 mins away from where we were staying, Owenbsboro KY!  Then off we went.

The kids were in free roam with the only worry poison ivy.  We spent time; driving and moving dirt on a T110 Bobcat,  mowing the grass with a Zero Turn Hydrostatic riding lawnmower, riding in an F350 pickup, driving a gas powered off road golf cart through the woods on trails, and I even got in some target practice when the tots were sleeping.  It was pretty much the best man-camp ever.

No real issues with getting to the lab or my bloodwork.  Most of the folks there were in for the pee tests for their jobs.  The ladies working the lab were so friendly...they told me "Hon, you don't need to make a reservation, you can just head on in and we'll take care of you".

It was Michelle's birthday, you all knew that she was staying with us for 1.5 months taking care of the kids while Tessa was looking after me.  Her fiance rented a houseboat and we all had a grand time on it, in Lake Patoka. The kids love being in the water and used it as a chance for multiple hours in the water each day.

This was a great trip and even worth it with the long car-ride with the Tots.  It was the first time I really felt like we all let our guard down and got to unwind.  It was great.

07/08/2016 - My Post 4th of July Georgetown Checkin

I was slated to go in every two weeks but from my last post, you know I was in the ER so that plan didn't work so well.  From now on, I was to go in locally for blood work every two weeks at Quest Diagnostics, and then every off week I head in to Georgetown for Labs and then doctors visit.

The most important things to track are my blood work at this point to make sure my liver is functioning well and we have a controlled dosage of Prograff (anti-rejection drug).  Also to check to make sure my kidney function is good because they tend to get worked hard with all the drug consumption.

So I've mentioned the pills that I take but maybe that doesn't hit home.  A picture is worth a thousand pills, right? Morning pills up top, Noon is just a single pill (covered) and then evening pills at 8pm.  Bedtime is just painkillers if / when I need them.

My Prograff level was slightly high so my one 5mg pill at 8am and 8pm is now Four 1mg pills at 8am and 8pm. More pills but lower dosage so it's a rob Peter to pay Paul type of thing.  Every two weeks they've been whittling down my Predisone dosages too. I was taking Two 5mg pills at 8am and now I'm taking One 5mg pill at 8am.  In two weeks, I hope to be off the steroid.  If I am, that means I can be off another drug too, my Nystatin 5ml, 4x per day.  The Nystatin is an oral medication that I have two swish around for two minutes and then swallow.  It's like a generic mouthwash that tastes like chalky gumball powder. Not in a good way, like, those gumballs that taste good for 5 seconds and then lose all their suga / flavor.

The reduction in meds will be a big win for me hopefully getting back to feeling more like myself, a big milestone.  My calves were cramping last week in the middle of the night so badly that I had to stand up out of bed to stretch.  It turns out that my prograff works to deplete my magnesium levels, so they added a Nooner dose of magnesium.  So now, 5 mag pills daily, Two @ 8am, One @ 2pm, and Two @ 8pm.

My blood pressure was ok but I was asked to keep an eye on my pulse which is flirting with 100 to see if I may need some additional meds to keep my pulse in a lower range.  Oddly, I also lost 2 pounds from my last weigh in two weeks back.

All in all, a pretty good appointment. Below are the bags of drugs and how I layout things when I create my weekly pill-box.

Until we have other news, I'm signing off.....

07/08/2016 - My Post 4th of July Georgetown Checkin

I was slated to go in every two weeks but from my last post, you know I was in the ER so that plan didn't work so well.  From now on, I was to go in locally for blood work every two weeks at Quest Diagnostics, and then every off week I head in to Georgetown for Labs and then doctors visit.

The most important things to track are my blood work at this point to make sure my liver is functioning well and we have a controlled dosage of Prograff (anti-rejection drug).  Also to check to make sure my kidney function is good because they tend to get worked hard with all the drug consumption.

So I've mentioned the pills that I take but maybe that doesn't hit home.  A picture is worth a thousand pills, right? Morning pills up top, Noon is just a single pill (covered) and then evening pills at 8pm.  Bedtime is just painkillers if / when I need them.

My Prograff level was slightly high so my one 5mg pill at 8am and 8pm is now Four 1mg pills at 8am and 8pm. More pills but lower dosage so it's a rob Peter to pay Paul type of thing.  Every two weeks they've been whittling down my Predisone dosages too. I was taking Two 5mg pills at 8am and now I'm taking One 5mg pill at 8am.  In two weeks, I hope to be off the steroid.  If I am, that means I can be off another drug too, my Nystatin 5ml, 4x per day.  The Nystatin is an oral medication that I have two swish around for two minutes and then swallow.  It's like a generic mouthwash that tastes like chalky gumball powder. Not in a good way, like, those gumballs that taste good for 5 seconds and then lose all their suga / flavor.

The reduction in meds will be a big win for me hopefully getting back to feeling more like myself, a big milestone.  My calves were cramping last week in the middle of the night so badly that I had to stand up out of bed to stretch.  It turns out that my prograff works to deplete my magnesium levels, so they added a Nooner dose of magnesium.  So now, 5 mag pills daily, Two @ 8am, One @ 2pm, and Two @ 8pm.

My blood pressure was ok but I was asked to keep an eye on my pulse which is flirting with 100 to see if I may need some additional meds to keep my pulse in a lower range.  Oddly, I also lost 2 pounds from my last weigh in two weeks back.

All in all, a pretty good appointment. Below are the bags of drugs and how I layout things when I create my weekly pill-box.

Until we have other news, I'm signing off.....

07/08/2016 - My Post 4th of July Georgetown Checkin

I was slated to go in every two weeks but from my last post, you know I was in the ER so that plan didn't work so well.  From now on, I was to go in locally for blood work every two weeks at Quest Diagnostics, and then every off week I head in to Georgetown for Labs and then doctors visit.

The most important things to track are my blood work at this point to make sure my liver is functioning well and we have a controlled dosage of Prograff (anti-rejection drug).  Also to check to make sure my kidney function is good because they tend to get worked hard with all the drug consumption.

So I've mentioned the pills that I take but maybe that doesn't hit home.  A picture is worth a thousand pills, right? Morning pills up top, Noon is just a single pill (covered) and then evening pills at 8pm.  Bedtime is just painkillers if / when I need them.

My Prograff level was slightly high so my one 5mg pill at 8am and 8pm is now Four 1mg pills at 8am and 8pm. More pills but lower dosage so it's a rob Peter to pay Paul type of thing.  Every two weeks they've been whittling down my Predisone dosages too. I was taking Two 5mg pills at 8am and now I'm taking One 5mg pill at 8am.  In two weeks, I hope to be off the steroid.  If I am, that means I can be off another drug too, my Nystatin 5ml, 4x per day.  The Nystatin is an oral medication that I have two swish around for two minutes and then swallow.  It's like a generic mouthwash that tastes like chalky gumball powder. Not in a good way, like, those gumballs that taste good for 5 seconds and then lose all their suga / flavor.

The reduction in meds will be a big win for me hopefully getting back to feeling more like myself, a big milestone.  My calves were cramping last week in the middle of the night so badly that I had to stand up out of bed to stretch.  It turns out that my prograff works to deplete my magnesium levels, so they added a Nooner dose of magnesium.  So now, 5 mag pills daily, Two @ 8am, One @ 2pm, and Two @ 8pm.

My blood pressure was ok but I was asked to keep an eye on my pulse which is flirting with 100 to see if I may need some additional meds to keep my pulse in a lower range.  Oddly, I also lost 2 pounds from my last weigh in two weeks back.

All in all, a pretty good appointment. Below are the bags of drugs and how I layout things when I create my weekly pill-box.

Until we have other news, I'm signing off.....