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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….