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Share 35 and Liver Allocation: What is Share 35? February 27, 2014

Posted by Stella☆LunaC in Mike's Big Adventure in Liver Transplant, to liver transplant and beyond.
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Mike was listed at Aurora St. Luke’s Medical Center on June 17, 2013, just one day before Share 35 was implemented. We realized our chances of getting the next liver at our hospital, might not be so good, and saw our hopes (being at the top of the list), go out the window.  On Aug 13, Mike  had fallen in the hallway and bumped his head, 2:30 in the morning, so at 9:30am, his sister and I talked him into going to the hospital, just to check and to make sure nothing was bleeding in his head or somewhere else in his body.
I packed him up and took him to UW Madison Hospital Transplant Unit as an ER run. I chose to take him there instead of St. Luke’s, because we already had an appointment that week for a multiple listing workup, and if I took him to St. Luke’s, he would surely miss that appointment, as he was always in for at least 4-5 days.
We called and told them we were coming, so they were expecting us. For the  next 4 days, they hit him with a barrage of tests, even though Aurora St, Luke’s had sent his file over for approval (it took them a couple days to do this). On the 4th day, we were preparing for discharge, when we were told a possible donor came our way. We stayed and waited another 18 hours, only to find out at 11pm, it was a no go, a fatty liver. UGHS!!! His sister and I decided to spend the night and then met with the team of Dr’s for an evaluation of Mike’s condition, as he had reached a MELD 36. They decided to keep him one more day, then we were sent home the following morning, on a Friday. We got home, and Mike’s Mom and Dad came over to see him; they stayed a couple hours and then left.

They had no sooner left when we got The Call at 4:15pm that same day, a donor was found. With the help of our neighbors, and a lot of coercing from the Nurse on the phone, telling Mike he really should come right away, not wait until the next morning, we got him in the car and headed back to UW Madison, a 1.5 hour drive. We arrived at 11:00pm and were quickly taken up to our room to get started with preps.

Our team of Dr’s got together and drove to Milwaukee to do a biopsy of a liver to see if it was viable. We waited all night, Mike tossing and turning restlessly.  By this time, we were on his 6th dry run. We did not know how many more of these we could do, without losing hope. At 6:30am, our RN came in to tell us the Dr’s were heading back and about 10 minutes from the hospital. O.M.G. the tension was palpable, the taste of fear in my mouth, we waited. and waited….They had already done all the preps, showers and enemas for upcoming surgery. At 7:00am, they came and wheeled us off to OR where we were to wait to find out the biopsy results. We still had no idea if the liver was going to happen. We waited in OR, spoke with the Anethsesiologist who came in to tell us his part of the procedure, while I signed all the necessary forms and paperwork. Then, at about 8:30am, Dr. D’Alessandro walked into our little room. My heart fell to the floor, he was not in scrubs……then the corner of his mouth turned up a little, and he asked us if we were ready to go to surgery!!! I am tearing up as I remember that moment…..

Mike got his liver 7.5 hours later. I was getting a cappuccino in the Family waiting area, when I turned to find his Surgeon standing behind me. I asked jokingly if he was taking a break, and he laughed and said no, he was done!  Dr. D’Alessandro said that was one of the quickest and easiest transplants he had done, in his 28 yrs!

 What is Share 35?

In Mike’s case, it saved his life.

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Wrestling the Monster: Living with Hepatic Encephalopathy, H.E. February 26, 2014

Posted by Stella☆LunaC in Mike's Big Adventure in Liver Transplant.
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You can’t see it coming, no way to prepare. You think the person is just cranky, or nuts, or maybe you are the one who is nuts. When HE came to our house, when Mike was going through some of his worst moments, I avoided him. When Mike was so sick, and stuck in the hospital fighting his demons within those 4 walls, I sat home at night, unable to sleep, waiting for a phone call, and watched this video; it helped me to understand how to cope. The only time I was able to relax, was when he was in the hospital, where I knew he would be taken care of, where they could help him, when things got out of control. They got out of control a lot. We stopped counting hospital admissions after 19, from Feb-Aug.
Mike came out of it, but it wasn’t like a light switched on, it took weeks, no, MONTHS. He came out of the Rabbit Hole 3 weeks before his final discharge and home, Dec.22, 2013. He was one of the  lucky ones, in so many ways.

PT Rehab: the year in review… February 21, 2014

Posted by Stella☆LunaC in Mike's Big Adventure in Liver Transplant.
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just some random musings, and TGIF!!!
Mike completed PT Rehab on Wed, we sorta “graduated” and were cut loose by Jim, his PT. Now begins the rest of our lives!
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Mike with Peter, Aurora St. Lukes, Feb. 2013, and Mike with Jim, Home, Feb. 2014! Wow, what a year!!!!
Took Mike out to Lowe’s Home Improvement the other day, place wasn’t very busy, so we felt comfortable mingling with people, hardly saw anyone.
…Mike wore his mask, and got around with a cart. It was something watching peoples expressions, as we passed by, employees would nod at us.
As we came back up to the front of the store, headed for the nearest checkout, we were called over to the Service Desk. They could see Mike was getting a little tired from the walking…they wanted to get us out without any hassle or wait, and fewer steps. As we checked out, the two clerks asked if he was recently recovered from an illness, so we told them about his transplant. They both gave us HUGE best wishes and said they were happy to hear he had a second chance at life again. It really made me feel good to know there are still decent people in the world who don’t judge based on looks alone…
I can't tell you how many times I heard the phrase; "..but, you don't look sick."  Nothing is more annoying than people assuming you are not sick because they don't understand that you can be truly sick even when you may not look sick.  How many of you have heard the same annoying phrase????????
Wishing you a beautiful weekend!

We are Survivors- The Perfect Storm February 2, 2014

Posted by Stella☆LunaC in Heart Notes, Mike's Big Adventure in Liver Transplant.
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We have weathered about the most PERFECT STORM any couple can ever imagine, and came out the Other Side intact and without killing each other. We have weathered the ugliness of divorce, separation from family, the death of my parents, and only had each other for long time. We became even more DETERMINED to make this life the best it could be. We built our business from the ground up, on little more than a wing and a lot of Prayers, and we made it work.
We moved to a beautiful house in the woods, isolated from mass transit and light pollution,  so dark at night,  the stars literally rain down on us as we lay on the deck out back. We wished on shooting stars, and we stayed up half the night in 2006 to watch my first Aurora Borealis. It was like getting religion, learning to play a REAL guitar and playing your first CULT song with any amount of recognition, it was MAGIC!
But nothing prepared us for what lay ahead….
We have survived Cirrhosis Of The Liver, Hepatic encephalopathy, aka H.E., 4 surgeries and over 25 hospital admissions between 2012-2013, before and after liver transplant. WOW, what a year!
I love you Mike Schwab, and if you ever forget that, or if H.E. holds your mind hostage again, I will still be here to remind you of that. I know you are sick and tired of being sick and tired, but you are on the sunny side of Life now, keep on truckin’ and don’t look back.  I would do it all again, because I know now, YES I CAN.
We are SURVIVORS!!

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