Earth to Funky?

Are you there, Funky?  Yes, I'm still here.  I've horribly ignored the blog yet again, but with good reason.  I'm tired of all this crap.  Yes, crap.  My MELD goes up, it goes down, I get false alarm calls about possible transplant, I get sick, I get better, I sleep constantly, I can't sleep.  The only thing constant is that I am cold.

We are now at 566 pounds of fluid removed.  Poor Fat Albie can't even walk, he just rolls everywhere now.  (Fat Albie is the person created by the removed fluid).  The PA that does my paracentesis and his wife had a baby while I've been waiting.  She'll probably be in college by the time I get my transplant at this pace.

The good news is that Sioux Falls is almost fully staffed for their liver transplant center--as soon as the third surgeon comes this summer.  I really hope that I can get my transplant in Sioux Falls rather than Milwaukee for both cost and convenience.  The docs are good in both places, and I know them all, but it would be good for mom to be closer to home for the couple of months I'd have to stay in Sioux Falls for recovery after release from the hospital.

Currently I am on my second round of antibiotics for bronchitis.  I had the worst cough I can remember in decades.  Just about gone now.  What else have I done?  In April I did some fundraising for the new roof on the church.  About $2,000 from the craft and vendor fair, plus got a couple of generous pledges.  I made 72 bars of soap, and it was almost gone.  Just four bars left now between what was sold by mail, at the fair and what we kept to use.  Love me some Rosemary Mint soap!  The big sellers where the two batches of Lovespell and the Coconut Orchid.  I'll make more for the church ladies craft fair this fall.

 Citrus Cilantro swirl soap.  Dad thought the green embed looked like a giant

dill pickle in the middle of the soap, but it opened up with the heat of the soap.

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

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.