Tuesday, September 1, 2015

THREE MONTHS POST-TRANSPLANT

TODAY IS THE FIRST DAY!

Tuesday, July 21, 2015

HERMAN HAS ARRIVED!

At 3 AM on May 20, we received a phone call from the Milwaukee transplant center that they had a liver.  Being skeptical after so many "stand by" false alarms, I asked if this was another of those.  No, Margie said, this one is viable for YOU.  So mom and I called the air ambulance company and we took off on a $12,000 plane ride to MKE.  A transplant escort vehicle took us to the hospital running lights and sirens the whole way.  You get some odd looks riding in a vehicle that says ORGAN TRANSPLANT TEAM on the side!  About an hour after getting to the hospital, I was on my way to pre-op.

I woke up after 7 PM that night frustrated that my hands were restrained and that I was on a ventilator.  I had to endure that for about 3 1/2 hours.  Then they came to take it out and I coughed it out good!  Think I messed up my wrists from fighting the restraints though.  I was totally looped on pain meds, so I don't remember much other than mom squeezing my finger when I was wiggling it.  She was a bit freaked out by all the monitors and 16 to 20 bottles and bags on the IV stand.  That picture is quite wiggly.

Thursday morning I woke up feeling pretty good.  I called dad and said "Good morning, da-dee!  I think he cried a little.  He would come to Milwaukee over the coming weekend with our car.  I got upset when I didn't think the nurses were emptying my JP drain when I asked them to.  It turns out they were emptying it, but I had so much fluid and blood leakage that it took less than half an hour to fill.  In spite of pumping 16 units (that mom remembers) of blood into me Wednesday and Thursday, Friday morning was back to surgery.  Mom was there about the time I got back to my room, and she was hurting.  She had fallen on her back in the hotel during the night and now has a compression fracture, which she is rehabbing.

The doctors re-opened my incision and fixed the two bleeders and removed the very large hematoma that had formed on the new liver.  Back to ICU with the restraints and ventilator.  Only about an hour that time.  So now I know why my rib cage is totally FUBAR.  Being cracked open for 8 hours total will do that.  Yeah, Dr. P--it hurts because I have bad posture.  NOT!  And he's the physical rehab doc.

The bleeding slowed, I got up and was walking (and dancing) around the nurses station for the next few days.  Then I left ICU and went to the post-transplant floor (icky 8 Center) for three days, then off to rehab wing for 6 days.  Then home for four days.  Then back to the hospital for 3 days.  I think the only reason they let (kicked) me out of the hospital then was that I was being my stubborn, demanding self, and they weren't meeting my expectations.  I can be that way, right Jessica L.

The house the hospital had put us in for the short-term rental was in NO way handicap accessible.  Nor was it adequately furnished, or clean, or even remotely comfortable.  The Aurora foundation and Ogden Property Management have a LONG way to go in learning how to manage rental property.  I did it for 10 years in Sioux Falls, so I do know what it takes.  Plus the parking sucked and we got $65 worth of parking tickets courtesy of the City of Milwaukee.  And I'm still waiting for a copy of the rent invoice, Cristina!

Now I'm back in South Dakota, recovering, getting better labs, and looking forward to moving in with my furniture which has been comfortably been ensconced in my apartment for the last 2 1/2 years.  And it didn't even contribute to my rent--it expected ME to pay for its rent.

So, what can you expect from a liver transplant other than weakness and pain?  Here are a few pics.  Don't look if you are offended by scars!

Yes, after transplant, you can paint your fingernails again since you aren't always waiting for a pulse-ox monitor to be slapped on you--and they don't like polish very well, especially not the OR ones.





The healing incision on my now almost flat tummy.  Cut side to side along the bottom rib, and 3 inches up the center (known as a Mercedes incision).  And I didn't even get the stinking car to go along with the incision!  What a birthday gift!  Yes, I got a new liver to save my life for my birthday.  The big 50.  And that's a shadow from my hand and cell phone, not a bruise.


The Sunday after we got home, we sponsored the radio broadcast of the church service, and had flowers in memory of the donor.  I don't know who the donor was, but I have a very strong suspicion.  I also wrote a prayer for the pastor to read during the peoples' prayers.  I am not a totally devout Lutheran, but I do believe.  Especially after everything I've been through in the last five years.  Here is it, and it is raw:

Dear God,


          Many are the times I lost faith; I thought you had given up on me.  Did you not see my suffering and pain? 


          I was afraid to live and afraid to die.  Then one night you called. It is time. In your grace you filled me with calm.  I did not panic or fear.  I just came. 


          You granted the medical staff the skill and ability to do all that was necessary.  There were challenges and bumps in the road, but now I can look ahead to returning to life.


          Please continue to hold my hand as I recover.


          Bless my parents and family for all they have done for me.  Thank you for all your prayers, thoughts and support.


          Please comfort the loved ones of the donor, who gave the ultimate gift, hold them in your heart and hands.

          Four days after the transplant, I celebrated my 50th birthday with the gift of life.  Thank you for bringing me back to your light.  I am your child, and you are my Father.


I am doing my physical therapy, getting massages to ease the pain since I don't like to rely on pills, and starting to enjoy doing some of the crafts and things that I used to love doing.  There is life after transplant, it just takes a while to get it going again.  I'm tired of hearing "It takes time" and "Be patient."  But I'm trying.  Not very successfully, but I am trying.  The only thing happening quickly is the weight loss.  The fluid weight I've been carrying for a decade or more is falling off anywhere from 1/2 a pound to 3 1/2 pounds a day.  Makes me a little weak.  But I refuse to use the cane, and my walker is not a clothes rack for old medical embellishments.  Kind of like my drawers.  Anyone need Coban or ted hose?

Tuesday, January 27, 2015

Off to Omaha!

I finally got my insurance changed to a plan that allows listing at more than one center,  So off to Omaha we go for a week if testing,  They are supposedly accepting the majority if the testing I've already gad done,  We'll see if it brings any action any faster than Milwaukee did.

Sunday, January 11, 2015

Still Here

Yes, I'm still waiting for my new liver.  No activity from Milwaukee, and the doctor is kind of giving up on them.  So on to Omaha where they think I will have a better chance getting transplanted at a lower MELD.  I had to change insurance companies to be listed in two places.  Now just waiting for the schedule to go down to Omaha for testing.  They are accepting most of my test results, but I have to do blood work, have an ultrasound of my abdomen, and meet with their doctors.  Hopefully it will improve my chances.

Now my MELD is 24 and I continue to keep up with the paracentesis every two to three weeks.  I have stopped keeping track of the total amount of fluid removed since it was too depressing.  I have very little appetite most days and have trouble drinking all my fluids.  I've had a random virus for the last week, causing all sorts of issues.  Not fun.  Plus I'm having a lot of trouble with sleeping well.  At least I haven't been in the hospital since September when I had a reaction to my flu shot.