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Money, a person’s worth, and stuff April 13, 2014

Posted by Stella☆LunaC in Heart Notes, Mike's Big Adventure in Liver Transplant.
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Yesterday, I went to my daughter’s best friend’s mothers funeral. It was a beautiful day, and a big turnout, as Sharon was a CPN which came with much respect within the community. And understandably, she would leave behind a dark hole in the lives of those under her care at Lakeland Healthcare Center, in town. One Resident was brought in by one of its staff, to see her friend, a tiny elderly slip of a woman with a thin windbreaker and a baseball cap, wheelchair-bound. A few of her closest co-workers came to see her. Brittany had come over the afternoon before, just to get away and spend time with my youngest. Natalie and her hubs Jake drove up the night before, to be here for BT. It was good to see my Twins back together, Buds to the end. Brittany talked about some of her new responsibilities; it was terribly overwhelming for her to absorb all the technical details of managing her mother’s affairs. When she spoke, it was matter-of-fact, she talked about errands at the bank, taking some of her things from the house, to her brother’s in town. Natalie was a good listener. Brittany finally told Nats to make sure I made out a will, for any unforeseen event. Natalie responded by telling her she knew for a fact, she would get nothing, if anything were to happen to Mike, myself, or both of us. She said that Mike’s kids would come first, and she would get nothing. I assured her that she would receive things that my mother and dad had left.  But when it came to the house, she flatly stated she would not be included in the distribution from any gain. It made me sick to hear this, to know how she was painfully aware of her status (and mine) within this family. We are not blood. When Mike was in the hospital recuperating from his liver transplant, things were not looking so well for him. He went through 1 rejection in the first 4 weeks post-op. They managed to stabilize his medications, telling us the whole while it was all a part of the recovery. Vitals and blood draws had to be taken constantly, 3 times a day, to monitor his levels. His meds were adjusted and we continued to watch for any signs of improvement. His Hepatic Encephalopathy had not cleared up yet, he was addled and confused, hallucinating and random fits of anger as he struggled to gain control back, and he was still unable to walk. 4 weeks after his surgery, he was transferred to a Nursing home. 4 days later he developed a raging fever and went back to the hospital to undergo another battery of medications and antibiotics to combat a 2nd rejection. We thought we were going to lose him, he was out of his mind in pain. His mother called one night, and we talked. I didn’t know what to tell her, as Mike was still not out of the woods yet. At one point in the conversation, she asked me what I would do if Mike did not come out of this. I told her I had not thought about anything but getting him through this, one way or the other. She seemed to doubt my conviction or to not understand it, and asked if I would want to go back to live with my kids. I told her that had not entered my mind, and I still felt I wanted to stay up here, regardless. This is my HOME, and I did not want to leave it. She backed down and let the subject die, and we talked a little while longer before she finally let me go. I feel like a stranger in my own home, no, NOT my own home, their house. It’s not mine anymore. I grieve silent, every time we pull into the driveway. I take Igor for walks, and when I remember the first time we laid eyes on the house, and how unbelievably lovely a place it was, I can’t stop the tears. It is not mine anymore, I am just taking up space in it. My dreams of growing comfortably old and at peace here, are just that, dreams. I feel empty and worthless now, that my time here is borrowed. I am just borrowing this place. I can’t even imagine how I will feel when our Igor has gone and I have no place to bury his ashes. I can’t lay him here and then leave him behind. I don’t know what I’ll do. Perhaps we won’t even be here when that day comes. I spent many nights alone here, my buddy at my side, unable to see any future, while Mike’s health declined. I didn’t know if he would survive to see a liver transplant. Then when he did get his donor liver, so many setbacks occurred and the future was still so far out of sight, the light at the end of the tunnel but a dim spot in the far ahead. As he lay in the hospital, his body fighting rejection, I fought my worst fear that after all we’d been trough, the fight to survive alcohol and liver disease, down to end-stage liver cirrhosis, I would end up alone, and then be turned out. Mike’s parents would take the house and their money back they had fronted 11 years ago. My worth was as plain as the writing on Mike’s daily  bulletin board in his hospital room, daily reminders that things can change in the blink of an eye. Nothing is safe and secure, no matter how much or how little money we have, or how hard we worked to get here. I’ve seen the ugliness that comes with having possessions and money. It’s only stuff. We will survive, we always will. I just want to fly free as Hawk, soar on a current,  no worries except where my next meal will come from. I will keep looking ahead, to the place where I belong. Image

Pueblo Bonito

 

Friends are like Snowflakes… April 9, 2014

Posted by Stella☆LunaC in Uncategorized.
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Linda Godfrey author of God Johnson; the Unforgiven Diary and I visited a really neat Woodworking shop run by John, in Burlington, Wisconsin. He has a large collection of Model Planes, Lionel Trains and Model Ships kits, accessories, beads, painting supplies and puzzles!!
This brings back memories…I remember Mom taking me to the airport to pick up my Daddy, when he returned from Germany.
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On the way back, we saw a sad sight…Frosty, out stranded in his field. 
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Where did all that snow go???
 
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I lost a dear friend yesterday. Sharon is the mother of my youngest daughter’s BFF. Taken from us by a sudden massive heart attack, gone too soon.
 

Sharon Ann Taylor
December 20, 1954 - April 8, 2014

Sharon Ann Taylor age 59 of Delavan, WI died unexpectedly at her home on Tuesday April 8, 2014. Sharon was born on December 20, 1954, daughter of the late Milford and Phyllis Leach. Sharon worked at Lakeland Healthcare Center of Elkhorn for nearly 35 years. Sharon is survived by her two children, Joshua (Janna) Merritt, and Brittany Taylor; Two sisters, Lorraine Lupo and Linda Wall; one brother, Ronald Leach; nieces and nephews, Tina, Keith, Christine, Sara, and Bart; and six great nieces and nephews. Sharon is preceded in death by her parents. A Visitation will be held for Sharon on Friday April 11, 2014 from 4pm to 6pm at Haase-Lockwood & Associates Funeral Homes and Crematory, 730 N. Wisconsin Street, Elkhorn, WI. A service will follow the Visitation at 6pm at the Funeral Home, officiated by Rev. Dr. Scott McLeod. In lieu of flowers, memorials can be made in Sharon’s name to the Vince Lombardi Cancer Clinic, W3985 County Road NN, Elkhorn, WI, 53121. An online guest registry can be found at http://www.haaselockwoodfhs.com. Haase-Lockwood & Associates Funeral Homes and Crematory of Elkhorn assisted the family with the arrangements.

I will miss you, Sharon. Brittany will be so lost, but we will keep watch over her for you.Image

Out and About, another Park Run, and a surprise on the way home! April 6, 2014

Posted by Stella☆LunaC in Uncategorized.
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Took the Boyz to Natureland Park, last Tuesday, Mike wanted to get his camera out and get some pictures. That park has definitely hooked him, I think :)

Mike was out of the car before I had it turned off! Unloaded Igor and off they both went!

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ImageThe weather was great, 48 F, a little nip in the air, the sun warmed us up. It just felt good to be out in the fresh air again.

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On the way back, we went around the lake, and found an old church we didn’t know about before. Heart Prairie extends all around the east end of Whitewater lakes, and finding a little church with a cemetery, was the cherry on top!

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Gravestones dating to the mid to late 1800′s stand as testimony to our Civil War dead and buried.Image

Ice on the inl etacross the road lingers; another couple weeks, it will all be a not so distant memory of what a long winter this was…

 

Cut Loose and Fancy Free March 31, 2014

Posted by Stella☆LunaC in to liver transplant and beyond.
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Mike had to go back in for an incisional hernia repair on Mar. 13, just 7 months post-transplant; the doctor had to put a large piece of mesh in where 2 hernias had developed, and nearly met in the middle, which would have been catastrophic. The fact that this was the 3rd time he had to be cut open in less than a year, was definitely not in our crystal ball of forecasts. The work was done and Mike remained hospitalized for exactly one week, to make sure everything went well.

Two days into recovery, he developed a mild infection; can any infection be deemed “mild” where a liver transplant is concerned? Probably not, but after a barrage of antibiotics via IV, he was showing enough improvement by day 6 to warrant his release to go home, taking with him a new prescript for oral antibiotics, and a drainage tube.

This ride home seemed different from the last. Iknow, I said that when Mike was discharged from Nazareth last Dec., but this was even more different. It was an almost palatable dawning that this was to be the last visit for at least another 3  months. Over the next few days, I woke up and was reminded at once, we don’t need to be in a constant state of panic.  Where do we need to be today? What is happening to me now. Do we need to call someone….WHAT IS THAT?!?  The sense of freedom was exhilarating!

As the sun sets on another day, and the snow and unbearably long winter fades to memories, I am once again thankful that everything is calming down. We could use a break now, please….

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Terminal Velocity | The Liver Disease Crazy Train Process March 22, 2014

Posted by Stella☆LunaC in A Stitch in Time | Patterns, Mike's Big Adventure in Liver Transplant.
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It’s a long winding road, Liver Disease. It twists and turns, taking both the unsuspecting recipient, and his or her closest family and friends down one helluva long, wicked, bumpy ride. The destination is often obscure, the road signs few and far between. Rest areas do not exist along the way. Once you are in it, there’s no getting off the Crazy Train until either a liver transplant is done, or……the outcome without transplant is inevitably, terminal. We have made it to the 7 month anniversary of Mike’sliver transplant, and is once again recuperating from his 5th surgery since the start of his illness. He was telling one of his fave male NA’s today, for someone who never got sick, never had a single surgery in his life, he has more than made up for all those years of being care-less, reckless and Doctor-free. Now his life will be a never-ending round of visits, labs, medications, and other life-preserving maintenance processes. His life has become one HUGE process, the one favorite word he loves to hate. Nothing could have prepared us for what we were about to face, back when Mike started to really realize something was going terribly wrong. He knew in the back of his mind he was on a self-destructive mission of personal total annihilation through alcohol abuse, but the alcohol made it seem less important, took away the having to deal with his demons, the confrontation he avoided like the Plague. I think back on having gone through Nursing school, then giving up my career in lieu of raising my family up with a Mom who would always be there for them. When my Mother became afflicted with Alzheimer’s, I got to see first-hand how devastating the illness can be, while watching my mother’s life spin out of control. When Mike was suffering from his Hepatic Encephalopathy, (HE), we were reminded by hospital staff, how similar the two are, how they mimic each other. In both cases, the patient gradually loses control over everyday things they once enjoyed; things like the TV remote, the microwave that never seems to work right, loss of memory and ultimately driving. Ironically, that was one of the easiest things for Mike to let go of. He often would say he actually liked being driven around, it gave him a chance to see things he misses when focusing on the road. The hardest thing for him to give up was his control over his body. “It’s MY BODY, I will do what I want with it.” I would administer his meds like clockwork, only rarely would he balk at taking the horrible sticky-sweet syrupy Lactulose. Toward the end, I would find the sticky syrup in odd places, but Mike never recalled having dropped it in the trash, or laundry tub. Then there were the Night Stalker episodes, where he would wander looking for the bathroom, and find it in the bedroom closet, or again, the laundry tub, or sometimes just outside the bathroom, in front of the dresser… ….and down the Rabbit Hole we went. I guess, in retrospect, all my past experiences have prepared me (as best a

s possibly could) for the life-changing events we now find ourselves in. Life will never be the same again. On a positive note, I just finished a Baby Minions Hat!  Working on the matching Wool Diaper Cover Soaker next.

This one has an enormous dilation going on LOL! Baby Minion Hat

Round 3, enough already…. March 17, 2014

Posted by Stella☆LunaC in to liver transplant and beyond.
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Mar. 3: Mike went in for  evaluation of 2 incisional hernias that had progressively got larger by the week. We spent 6 hours in pre-op preparatory meetings, lining up a surgery date, pre-op tests were being arranged, all was go, until the admissions desk called to tell us our insurance company (we had only started with) had termed our policy for non-payment. The EFT I gave over the phone on Jan 29, never went through. Immediately, a hospital Financial Counselor came to our rescue and helped get us back on board with the Marketplace, which resulted in a 3rd application for health insurance being taken over the phone. The first two had collapsed during administrative snaffoos galore, and we were down to the wire. After finalizing a new application, we went home to wait until I could get our HIRSP insurance reinstated, through yet another “extension” grant. A phone call the next morning at 7:00am and we were back on board with our old insurance, One. Last. Time.

The next day we confirmed Mike was still in the books for surgery the following week, and so we spent the weekend waiting, relief mixed with apprehension.

Mar. 12: Wednesday, we were called in do pre-op labs, chest x-ray and EKG. We were in and out in about 5 hours.

Mar. 13: Thursday we arrived at 9:30am, a half-hour early, so I went and got my parking pass for the week. Mike was taken to First Day Surgery where we were put in a small prep room to wait for the surgery.

Mike whisked off to OR at 10:00 am sharp, and I went to 1st Flr surgery waiting area to check in. At 11:30am they informed me the surgery had begun and Mike was doing fine.Image

At 2pm, they told me Mike was out of OR, and would be in Recovery for the next 2 hours. I was sent to a private waiting room where I was to meet with Dr. D’Alessandro to discuss Mike’s surgery.  When he came in, he told me it was a little more extensive than he imagined; the hernias on either side had little more than a bridge of skin between the two separating them! He then explained how he was able to go in and sew in a large piece of mesh that would eventually grow in with his fascia to form a permanent second “skin”. That would take approximately 6 months to 1 year to complete. He would need to take it easy for quite a while as this next recuperation time would be 6-11 weeks. The third suspected umbilical hernia was not one, but simply a layer of fatty tissue left over from Mike’s June emergency hernia operation, and did not require repairs.

Mike was moved to the Transplant wing at 4:15pm, and ready to begin his recovery.

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Day 1 post-op: Mike was in good spirits, they even had him sit up on the edge of the bed for just a few moments.

Day 2 post-op:  Mike’s abdomen appeared quite distended when I arrived, so I asked him about that. He said Dr. Fernandez had already been in that morning and indicated there was an infection, which he marked with a temporary marker. That mark would be their base line for progress. He was given clear broths, juices and jello, but had no appetite. He had a rough day, was very pale, very nauseous and throwing up, so they took him off clear liquids and put him back on ice chips again. His temp had come down from the day before. (99.9) and they said his WBC had come down from 2 days earlier. They began loading him with antibiotics, potassium and magnesium drips as well as Lasik, to help clear his bladder.  Later that day, we went for a walk, and he did really well. So far, he was in good spirits.

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Day 3: Mike’s abdomen appears ever-so-slightly less distended, he said he felt it was not right. Dr. Lucey, Dr. D’Alessandro and the other OR Dr. (name?) took another look at Mike’s incision, agreed there was no change in appearance. They would keep an eye on it over the next couple days and maybe let Mike get back on clear liquids again tomorrow. He is still getting antibiotics, as well as other IV’s, and is generally just tired of all of this.

Hopes tomorrow brings a better day….Mike wants me to stay home. We will see….

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.

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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