Thursday, February 6, 2014

To TIPS, or not to TIPS?

Ok, so last Monday we set a record with 11.3 liters of fluid removed during the paracentesis. I thought we'd get 6 or 7 today. Nope! Record territory again--11.4 liters! Fat Albie now weight a whopping 453 pounds. That's 55 pounds of fluid weight up and down in two weeks--this can't continue.

Fortunately, my creatnine was back to 1.3, so I get some but not all of the diuretics back. That will help. Tomorrow during the weekly call with the transplant center in Milwaukee, they are going to talk about whether or not I'm a viable candidates for the TIPS placement. With a history of hepatic encephalopathy, it's risky. But it can be controlled and reversed. Dr. E said it makes his mind race thinking about doing that to me, but the more frequent and high volume removals of fluid carry their own risks. Under no circumstances am I a candidate for a port and tube for home fluid removal due to infection risk. With the recent bout of sepsis, I whole-heartedly concur! If we do the TIPS, I am insisting on general anesthesia, not local. Here is why:

http://www.nlm.nih.gov/medlineplus/ency/article/007210.htm

Sunday, January 19, 2014

PIC it up!

I started feeling less than great on about New Year's Eve.  The 4th and 5th of January I felt downright lousy.  The 6th I felt fine.  I woke up on the 7th with a fever.  Regardless of taking a small dose of Tylenol, I just felt worse and the fever kept rising.  Mid-afternoon the doctor said to rest and hydrate.  By 7 PM, I was starting to become incoherent.  The doctor's office then said to get to Sioux Falls to be admitted.  My blood had an elevated white count, so we started IV antibiotics.  I felt pretty good the next morning, but had another paracentesis to remove 9.3 pounds of fluid.  Fat Albie weighs 398 pounds.  What had happened?  Sepsis.

What is sepsis?  Here is about the easiest definition:


Sepsis

Sepsis is an illness in which the body has a severe response to bacteria or other germs.

This response may be called systemic inflammatory response syndrome (SIRS).


Causes

The symptoms of sepsis are not caused by the germs themselves. Instead, chemicals the body releases cause the response. A bacterial infection anywhere in the body may set off the response that leads to sepsis. 

So after a week in the hospital being blasted with antibiotics, I get to do ten days of IV infusion antibiotics at the local hospital.  It only takes about half an hour, but the PIC line hurts.  The insertion point is sore, and the adhesive is burning and blistering my skin.  The first night I had a major bleed from it, and had to have the dressing changed after one day.  That hurts, too.  I've found that if I use Coban to wrap the lumen to my arm so it doesn't move, it hurts less.  Woke up when the recycled Coban from earlier in the day came unwrapped, so now it is wrapped in Angry Birds Coban.   The PIC line is inserted on the under side of my right arm, runs up the arm and across the chest to the area near the heart.  What is weird is that I can sometimes feel where it is.

 The dressing pulls my skin so badly that it looks like I have wrinkly old lady or
elephant skin.  We change it again the 21st, then hopefully remove it the 23rd.

 I have a feeling I will be using lots of hand sanitizer to get the adhesive off, which will likely burn like a son of a gun.  Maybe lotion will work, too.

In better news, Avera McKennan is apparently close to submitting their application to UNOS for approval as a liver transplant center.  That would be awesome, so we wouldn't have to travel back to Milwaukee.  It would also be much less stressful to be closer to home.  So cross your fingers and anything else that you can safely cross.

Tuesday, December 31, 2013

Still here

Yes, I'm still here.  Just bored and tired of waiting.  Made it through Christmas, and now have my MELD back at 18.  Lots of things done over the past few months, from cooking and baking to craft projects.  Maybe I should quit eating soup and my MELD would go up again.  Maybe I'm being to healthy?  But we are soup eaters, so eat soup we shall.  The split pea soup I made on Sunday cost about $2 to make the pot and we'll get 9 servings out of it.  Nothing but veggies and a tiny bit of leftover ham.  No other sodium added.  I hate hearing people say you can't eat healthy without spending a lot of money.  Not true!

 Making lefse with mom!  Kind of a funky shape on this one.

 Fuzzy picture of one of the wreaths we re-made for the front of the church.

 Chocolate chip cookies for Bob and Derek!

Ice skate centerpiece I made for a fundraiser raffle at the church.

Antique sled I decorated for mom and dad's house for the holidays.  Love the Suess swirls at the top.

And of course, tonight I woke up at 1:30 and can't get back to sleep.  That's relatively rare these days, since I have been sleeping much better.  Usually.  Except when the fluid starts building in my abdomen.  We are now up to 370 pounds of fluid removed.  The blob of missing fluid weight has been named Fat Albie.  One day he will explode.  Or I will stop needing these removal procedures when I get my transplant.  I'm thinking January 6 would be a good date for the transplant, since it works out with my nonsense numerology.

Time to go back to bed and try to get some sleep.  Gotta rest up so I can party in the new year (salami, cheese, veggies with dip, and a Sprite Zero--I'm a rebel)!


Thursday, September 26, 2013

Step by Step through the Transplant Process

Ever wonder how the transplant process works?  Here's a great video from www.organdonor.gov that explains it all.

http://www.youtube.com/watch?v=HuKx2a5HkIM

Bone marrow donors can be listed at www.BeTheMatch.org for a test kit.  Your local clinic can draw the blood and send the kit back to the national registry.

Become a donor today--it's easy and free.  Donors have no cost to be tested or to donate.

Thursday, September 5, 2013

Holy 215 pounds, Batman!

Have you seen a missing persons report for a 215 pound person? If so, he or she is bio-medical waste, having been removed from my body liter by liter since 12/12/12. For the kicks of conversion, that is 26 7/8 gallons of fluid. I told Derek that since this was the 8th one he's done, after two more I get my free one. He wasn't so sure Avera has a punch card program. And the paracentesis hurt today, too. It usually doesn't (although why having a hollow nail shoved into your side, attached to tubing, a suction unit and countless collection containers should hurt is beyond me).  If you want visual, go to the blog.

http://www.funkyliver.blogspot.com/2013/01/not-today.html

Then the appointment with Dr. E. That went much better today. Dropped a whole one point on my MELD, now at 22.  I'm trying to push my next paracentesis two weeks out since I have to re-MELD then anyway. Admonishment from Derek about not making myself miserable. Is it weird to call a doctor just by his first name? He's just so casual, and that was how he introduced himself.

Next month will be a marathon appointment. Paracentesis, MRI, Dr. E, then Dr. San (so many docs with 'S' names I'm out three letters on their names now). I refused the MRI, but he doesn't want to do a CT because the contrast dye used is hard on the kidneys. They don't want to cause any further damage to mine. So I agreed to open upright MRI. No go, since he doesn't feel the image quality will be sufficient. He offered drowsy meds. I countered with totally unconscious. They are checking with anesthesiology and will get back to me. I hate that tube. Of course, the one time they tried to put me in it, I was encephalopathic and convinced they were going to put a monkey liver in me while I was in there. 
Today I had to show the doc my abdomen and ask what was going on. The muscles down the core have been forced apart from the pressure of the fluid, so sometimes the stuff that should be behind them pops through. Thus the MRI. Double drat.
 
Ok, enough for today. I need to find something to eat since I wasn't hungry at dinner time. I needed to rest after the 19+ pound fluid loss.

Sunday, July 28, 2013

Sad but true



I saw this and couldn't resist posting it.  At the transplant clinic, they actually call them "donor cycles".  I know if may be more fun to ride without a helmet, but unless you are an organ donor, put the helmet on.  It's a choice.

Tuesday, July 23, 2013

Stupid Kidneys

I know.  I am once again guilty of neglecting the blog.  I do have a valid reason this time.  I spent five days at Avera in acute renal distress.  It isn't enough that I have a bad liver, but it makes things tough on the kidneys, too.  It all started with a UTI and they took me off the diuretics.  Three paracentesis procedures in three weeks, then five days of miserable hospital time.  And of course they screwed up the dietary again and gave me regular meals not low sodium.  And they forgot the fluid restriction.  Blah!  Still on modified diuretic doses, have labs tomorrow, then Dr. E on 8/2 and new Dr. S on 8/6 for the kidneys.  Double blah!  And another paracentesis on 8/2 if I can make it to then without.

And we lost my Aunt Lucile, namesake of Lucibelle the car, on Sunday.  She was 94 and is finally at rest, which is good for her.  Whether Uncle Ed appreciates it now that she's on his case again, we  will never know.  RIP Lucy!

Thursday, June 13, 2013

The Trip Home

Coming home has never felt so good.  Yes, we still have unpacking to do.  My apartment is piled high with boxes I will need to unpack and put away over the coming weeks, but I LOVE MY APARTMENT!  Here is a little pictorial travel journal of our journey home from Milwaukee this week.

 Think we were loaded high enough?


Hitting the road!

Chica tells us where to go.

My mommy and daddy are mean!  They said I was too klutzy to
play on the playground or slide down the slide.  I resemble that remark!!


Lunch:  egg salad, Cool Ranch Doritos and water.


It looks like a Schwiesow picnic!  I can see cousin Kim, Aunt Bess, and Grandma.
They even had a white tablecloth on the picnic table, and all the trimmings, like the 
family used to travel on those epic siblings trips across the country.


Cool rock formations.  Not bad for a shot while driving!



More cool rocks.


You know you are getting close to home when you get trees, a deer
crossing, and a construction barricade all in the same shot!


Orange Carrot Mistic.  Best juice ever!

The important stuff got put in at the rest stop.


Yeah, that's my Shopko Hometown!


Milwaukee readers:  Gas is supposed to be LESS than $4 a gallon.


HOME!!!

Once I get settled into my apartment (in about a month!), I will post photos of that.  For now, it's Dr. E on Tuesday.  Feeling great!!!!!



Home on the Range

So, what's the weather like in Milwaukee? Don't know! Here in good old Madison, SD it has been overcast and breezy with a brief shower today. THIS IS NOT A MISPRINT!! We are home!

Why you ask, after the last hospitalization I had such a rapid turnaround and improved so that on Friday, I said if I was at 18 like last summer, I wanted to go home. The team talked it over and decided they were doing nothing for me there that couldn't be done in Sioux Falls, so westward ho! The head transplant surgeon from Milwaukee in now spending 80% of his time in Sioux Falls working on betting them certified as a liver transplant center. They currently do kidney and pancreas.

After finding out all of this Monday morning at 10 AM after my echo cardiogram and bubble test, we packed frantically, and left Milwaukee at 8:50 AM yesterday. We got home last night at 7:50 PM. Four stops for rest or meals. Great trip, tolerated it well, and first one up this morning. Feeling fabulous! See Dr. E in Sioux Falls in Tuesday, then I hope we can go to monthly. Tired of getting poked once or twice a week.

THANK YOU ALL for your prayers and support. Although I am still awaiting transplant (contingency plans made), you have helped me recover and helped mom, dad and I get through this trying 5 months and 2 days. We wish you all well.

Sunday, June 9, 2013

WOW!

Ok, obviously I have been neglecting the blog again.  May was busy, with yet another fruitless hospitalization for complications of abdominal fluid removal.  And two of those lovely paracentesis fluid removal procedures, for a total of  9.3 liters of fluid (not quite 3 gallons).  Ugh!

I have felt wonderful since coming home on the 30th, however.  Lots of energy, totally clear head, no issues at all.  Hopefully writing that won't jinx it.  Realised that today is my 671st day on the transplant waiting list.  Yeah, a long time.  In one week, we will be in Milwaukee for 5 months WITH NO TRANSPLANT EVEN CLOSE!!  Our family says we're so good to wait patiently.  Who the heck is waiting patiently?  Not us!!  We are horribly impatient, and have expressed this to the transplant team.  I hope that a plan I proposed for them is green lighted.  Fingers crossed.

On the upside, a couple of nice days, more wonderful fashion finds at the least expensive places in Milwaukee.  And on a very positive note, out transplant housing neighbor Dwight, got his Type A liver on May 15.  The surgical team said everything fit in place so well it was like it was his own liver.  His recovery went remarkably well, and he returned home to Worthington, MN with his wife last Friday.  He even had the go-ahead to drive his pickup a few miles.  That's usually a 3 month wait!  He hasn't driven it yet, but did go sit in it again to let it know papa was home!  So happy for them.  We will miss them dearly.

Well, as usual I am writing in the middle of the night because my sleep patterns are still messed up due to the liver disease.  But, I still have a recipe to share.  I made a thank you for the clinic staff, and it was so good, easy, and basically sodium free!




REFRIGERATOR SALSA
4 small vine-ripened tomatoes, diced
2 bunches scallions or green onions, sliced thinly
1 small jalapeno pepper, seeded and de-ribbed, diced super fine
1/4 cup fresh cilantro, chopped
Pinch of sea salt


Squeeze of fresh lime juice

Combine everything in a jar or container and refrigerator. Let set at least overnight to let flavors blend. Adjust the amount of jalapeno based on your heat preference
.