Things I never want to hear again

1.  A doctor saying "We'll see you next week."
2.  A doctor saying "Be patient, your time is coming."
3.  Any medical person saying "It's all a part of the disease."
4.  The words "I understand how you feel" coming from medical/quasi-medical people. 

The waiting is about the hardest thing I have ever done.  I am not a patient person--so just being patient is impossible.  Part of the disease--swelling, itching, being cold, numbness, dizziness, sleeplessness.  And trust me, you do NOT understand how I, or any other person awaiting transplant feels.  No textbook can make you understand.  It's something I can really even explain the help someone understand.

I finally said I would try the anti-itch medication.  It took an hour to work, then worked for less than 2 hours.  The Benedryl gel works better!

And I found out that they can't remove my appendix when the do the transplant because of the area in which they are working and anesthesia issues.  Gall bladder, yet.  Appendix no,  I didn't want to worry about ever having my gut opened again if the appendix goes bad.  Oh, well.  So I consoled myself with a small cherry lime Icee.  YUM!

And Marquette won their game, so Milwaukee has gone crazy!  Oh, up 2 points on the MELD score this week.  At least it appears that the kidneys were not badly damaged with the little renal failure scare, and should fully recover after transplant,

Home at last . . . and other good news

I got to leave the hospital 2 days ago to return to "Liver House" as they call it at the hospital.  We were fortunate to get the only single-family home they have.  Tomorrow night we have invited the neighbors (Robin and Dwight) from Worthington, MN over for stir fry.  My challenge is to make it low sodium.  She brought over a cute basket for my "housewarming"--whenever I can go home.  Cute vintage kitchen towels in it.  They are getting as discouraged as we are, just sitting and waiting day after day.  I have been on standby once, and he's actually been prepped twice. 

Went to the doctor today, and my creatnine and INR were much improved.  The total bili was higher. All in all, my score dropped a couple points.  I'm not due yet for an update to UNOS, so I stay at the higher score for a while.  Double-edged sword.  While it's bad that I may move down the list, I also get to stave off the renal failure they were afraid might necessitate a liver and kidney transplant.  With a liver, you run 5 days of steroids.  With a kidney, you get steroids forever, puff up, and get that moon-faced look. 

Finally getting a little tires, so I hope I can go to sleep.

Day 12

Yes, I have now been here (Aurora St. Luke's Medical Center) for 12 days.  Finally got dietary to come up with food I can eat without getting nauseous or vomiting (SORRY!).  They are concerned about my MELD and my creatnine. So we play with changing medications.  I have refused the belly shots that bruise and sting, since they really aren't necessary.  I take the other meds though.  My blood pressure has finally stabilized about 115/65 and no more of the 70/50 stuff.  But medicine to make your blood pressure go up?  I've never heard of that.  But at least I'm not light-headed and dizzy anymore.

I have been argumentative, crabby, whiny, and everything else.  Other than getting the food handled, it's done no good.  So, I changed my attitude today and stopped fighting everything and being belligerent.  As long as they leave my door closed so I stay warm, and the nurses stay quiet going into and out of their lounge across the hall, I will be a good girl.  I have accepted that I am sick and need to be here if the doctors think I do.  The only thing I will fuss about is if they say they are going to do dialysis, move me to ICU, then have Dr. Kramer change the plan.  If they suggest it, I will do it under the following conditions:

1. My things get packed on the cart to move to ICU.
2. ICU brings the bed here to transfer me to IR where they put in the line (oh, lovely sedation on this one).
3. Then I am taken up to ICU to start the procedure.

Otherwise, I will likely not be such a good girl.

Mom and dad brought me some of my projects, so I will be making some more cards.  I finished loom crocheting a stocking cap today and gave it to the hospital for the Oncology department so a chemo patient can have some pride, privacy, and warmth. Someone that appreciates Dr. Seuss that is.  I think it looks rather Seussical--like something Thing 1 or Thing 2 would wear.  You judge:

Funky variegated yarn with a "Thing" on top

Another view that doesn't look so long!

Dinner:  Roast beef and Alpine Swiss on a tomato basil wrap, Terra Exotic Vegetable

chips, and fresh fruit.  I think I'm turning into a fruit plate--I got 4 of them today!

I did banish mom and dad from the hospital so they could stay home and rest or go do something different.  I got them easy, non-freeway directions to go to Red Lobster so they could use the gift card my sister gave them for their anniversary.  Biscuit binge!  Ok, time to put the feet up and get ready for bedtime meds.  Still freezing cold even with the warmed robe they brought.  Need to climb under those 5 blankies on my bed.  Nite nite!

How many ways can you spell 'OUCH"?

So, what have I been doing lately?  I'd like to say having fun, but as you can see, that would be an inaccurate statement.  Let's take a look, shall we?

Me hooked up to the IV, telemetry, and Mahurkar line to remove

the excess fluid from my blood.  Doing the SCUF before the CVVH.

The most uncomfortable I have been to date.  The only thing missing is oxygen, but fear not--that would come later.  At this point,  I was in critical care ICU.  I was moved down to a high acuity ICU bed when they stopped the SCUF procedure. They left the line in just in case they decided to do the CVVH (continual venovenous hemofiltration). That is a 12 to 24 hour process. It removes the blood from the vein, filters it, then returns it to the vein.  The SCUF procedure does not gain me the dialysis points on my MELD score that the CVVH would, although it isn't true dialysis since it only filters and doesn't use any product to cleanse the blood.  So I am currently listed at 24, which gives me my best chance yes at getting a new liver,  just need to find a Type B now,  When they removed the Mahurkar, I moved to a regular room.

Mahurkar catheter attached to large vein in neck.  And yes, it does pinch!

The weight of the Mahurkar in the neck is enough to keep my head tilted to the right, And make it difficult to move, and make it impossible to turn my head.  They promised the removal wouldn't hurt.. Big fat lie. It is still sore more than twelve hours later.

 Best meal I've had so far. Pineapple, cantaloupe, and strawberries.

Not sure if I get to go home in the next day or two,  Depends on tests as usual.  I will try to keep you updated or my parents will update my Facebook. Thanks for all the well wishes and prayers,