Door County Vacation at last! July 25, 2014Posted by Stella☆LunaC in Mike's Big Adventure in Liver Transplant.
Tags: Door County, Fish Creek
I never thought we’d see the day, and never stopped believing it would happen.
Today we drove up to Door County for a long overdue road trip. Mike is finally able to make the 4 hour ride.
Mike packed the truck while I finished dressing and we were out by 8:30 am.
Yep, there it is, the Knitting Bag. All. The. Way. In. The. Back.
Igor is not going to get it.
I started out and got us through the Milwaukee leg, then we switched in Grafton. We passed the worlds tallest flagpole in Sheboygen, there she flies in all her glory!
a sight we haven’t seen in a loooong time
What a day it’s been! We stopped in Fish Creek and saw Mike’s sister’s lot where they were supervising tree trimming before construction.
After a short break at the condo, we went up to the tip of the Thumb to Charlie’s Fish Shack in Gills Rock and got some smoked whitefish and ate at a local county park.
You never know what you’ll spot in Wisconsin, home of everything weird and BIG!
One BIG Gnome! And lots of Shipwreck reference signage
<img src="https://manyhorsesmane.files.wordpress.com/2014/07/20140725-235224-85944999.jpg" alt="20140725-235224-85944999.jpg"
Last stop, a Pioneer Cemetery and a quick stop for a look at the bay
Stellar Updates | Zymol Man Returns! July 11, 2014Posted by Stella☆LunaC in Mike's Big Adventure in Liver Transplant.
Tags: liver transplant, Mini-bike, rehabilitation, Zymol, Zymol Cleaner Wax
Happy July 4th (a bit later) The Fourth of July weekend was a huge success-4 couples from Chicago, old friends of Mike’s all came up to see him. Only one couple had already seen him post-transplant, so it was a grand reunion for everyone involved!
Pete and Roni had so generously gifted Mike a mini-motorcycle back when he was in the hospital in October of 2013. Mike was itching to get it running, but had problems with starting it, so it sat until now, unused and neglected. Well, I can’t say neglected; Mike did spend an afternoon waxing his new toy with his favorite product, Zymol Cleaner Wax! He just couldn’t figure out how to start the thing.
So, with a little help from his friends, they got it running and took turns around the block with it. When it came to Mike’s turn, all eyes were on him!
Never thought we’d see the day, never stopped BELIEVING it would happen!
A lot has happened since Mike’s liver transplant and homecoming on Dec. 22, 2013. He continues to improve more each day, and is as we speak, out on his rider mower for the 3rd time this season. It is something he spend literally months dreaming of doing again, and now he can!!!
I took on a job outside of our home-based business, to help defray some of the mounting medical bills. It’s not much, never seems like enough, but it helps. So, I must close for now, and get ready to leave for work, but will return tonight with more pictures and news!
Life is starting to look GOOD again!
Thanks to dear friend Rasa, for the lovely image. :)
All Aboard! This Train is pulling out of Domination Station April 24, 2014Posted by Stella☆LunaC in Mike's Big Adventure in Liver Transplant.
Tags: Aurora, Mike, mood swings
Whine and Cheese Fest
So my cholesterol is a tad up. That’s ok, I wasn’t worried, because I normally eat healthy when at all possible. I do “cheat” on occasion, who doesn’t?
I did a search for cholesterol-lowering foods, just to refresh my memory, and find that I’m already on the right track. What a surprise. I regularly snack on soy nuts, pumpkin seeds, and dried cranberries, and when I get hungry, granola in my plain low-fat yogurt is perfect. I am enjoying a newly acquired habit of collecting flavored teas, and am now up to 10 boxes of various flavors and makers.I have Sleepytime Sinus Soother, Sleepytime Echinacea *Note to Self: add Tension Tamer, Sleepytime Vanilla, White tea, Lemon Ginger, Black Forest, Black Cherry Berry, and 9 flavor Stash Sampler pack. That’s just to name a few. I still enjoy my pot of coffee in the morning, but am cutting back on the powdered creamer and using Natural in the Raw instead.
Now, I just have to stop craving McD’s whenever we go to Madison. Which is hardly ever. OK, scrap that idea. McD’s once every 3 months is allowed. If cheating is the culprit, I can deal with that.
In Other (Liver)News
I am not sure what is going on, but here’s the synopsis:
Monday labs, check. We came home and Mike discovered his rider mower battery was missing. I explained to him that his dad probably took it home last Fall, with the intention of replacing it with a new one. The battery charger might be with that. He went on a tangent about his Dad taking stuff and never returning it, and demanded I call his dad. I suggested he call and ask, since it’s “his” lawnmower (problem). He flat out refused and blamed me for things becoming missing.
Tuesday, go to Aurora Clinic to get Rx’s filled. I forgot them Monday.
Mike was in a nasty mood because we couldn’t find his battery charger still. Dinnertime, Mike continued to rant about how the mower worked perfectly fine before, and now his dad had basically ruined everything. I reminded him of how his dad was only trying to help us, beings Mike was sick all last year and in hospital more than home, AND in fact, shouldn’t have felt a need to help us, but did anyway. Mike insisted the mower was fine. I argued it wasn’t and explained how I had to help his dad, WITH A BAD HEART, push the mower back to the garage not once, but twice, once from the bottom of the hill out back. That did not even phase him, his dad was still at fault, and the rider still worked perfectly, last time he rode it. Which was 2 summers ago, but when I pointed that out, became another arguement about how it was not 2 years but one year. When he told me he knows more about mower engines than I do, his argument hit a brick wall. There are 3 things I do NOT respond well to: #1: being called a liar, and #2: being told I am not as smart as the other person. and #3: the ever-popular Fuck YOU and YOU can leave.
He proceeded to rant about how he said he spoke with his dad, saying I should know where the MIA battery charger is. And then proceeded to tell me that since I also lost his battery cover on his bike,(it fell off on the road the one and ONLY time I took it out for a ride last summer), he was going to take my battery cover off and put it on his bike. “If it was YOUR bike, you’d have bought a new one right away.” Wrong answer, to which I responded, “I don’t have the money for yours and certainly wouldn’t have the money for mine.” Off to the bedroom to rant, tell me to go fuck off, and on and on and on….. I slept out in the living room.
Wed. I got up and let Igor out, then on our way back inside, I made another sweep of the garage and found his battery charger, on a shelf that I would not normally put it on. Dad again. I placed it on the workbench, in plain view for Mike to see. When we got ready to leave, he either didn’t notice the battery charger on the workbench, or didn’t want to acknowledge it. He didn’t say anything,
We drove back to Aurora Clinic to pick up his Rx’s. On the way, Mike drove, seemed ok, chatty, his usual self. We were sitting at a 4-way stop, and he let the opposite driver go first. He sat there still, and the second driver waited, and waited. I looked over and he seemed distracted, so I asked what he was doing. No response, so I spoke his name, and he seemed to come out of his trance, saying the light was red still, and as I looked, he was referring to the light at the NEXT intersection. I felt we had just entered the Twilight Zone, and my nerves, along with my BP, jumped.
We got to the Clinic without any further incidents. I found out my Prograf drug savings card is only good for the name brand, Mike has been taking the generic. The new cost for the generic brand is $65 a month, so my cost would be $20 with insurance. OR I could get the Brand name, pay $10 plus the difference. OY VAY. We had to stop at Walgreens to pickup another Rx I had placed before we got the Aurora Rx card. Then I found out they want a Dr’s consent before they can dispense Mike’s Tacrolimus under the Brand name Prograf. “I’ll go home and call our Team and find out what we can do.” I spoke with Sue, and we bounced the mail-order idea around again as she made notes to call in new scripts for Prograf. Mike acting like nothing was wrong, so I relaxed and we fell back into our normal routine. Back to the bedroom last night, but didn’t sleep well. Again.
This morning, Mike got up, and I could sense immediately he was in a mood again. The cat meowed, he bitched her out. I didn’t say anything and went to get Igor’s coat from the closet and proceeded to put it on. In the next moment, both Igot and I were pushed rudely out of the way, nearly down the stairs, as Mike shoved past us. I said rather annoyed, “excuse us!”, and listened as he went on a tangent about us taking up the entire hallway. “You could have said something or waited.” got another fuckyou. I put my boots on and stated to no one in particular, “I’m done.” and was promptly yelled at from the bedroom that I could “get the hell out and leave”. Mike’s hearing is acutely selective, as usual.
Either we have a problem with LFN’s or this is the new normal.
Que Lurch voice, “Uuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuhhhhh….”
Tags: cranberry, nut bread
Sandra’s Cranberry Orange Banana Chocolate Walnut Bread
4 cups flour
1 1/2 cups sugar
1 1/2 tsp baking powder
1 1/2 tsp baking soda
pinch of salt
1/4 cup cocoa powder *optional
1 can whole cranberry sauce
1/4 cup oil
1/2 cup cran-cherry juice
1/2 cup orange juice
Mix all dry ingredients together, add banana, eggs and oil.
Divide into two 9×5 loaf pans.
Bake 350 for 1 hour. Test with toothpick in center should come out clean.
Remove from pans and cool on wire baking racks.
Money, a person’s worth, and stuff April 13, 2014Posted by Stella☆LunaC in Heart Notes, Mike's Big Adventure in Liver Transplant.
Tags: house, money, worth
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.
Friends are like Snowflakes… April 9, 2014Posted by Stella☆LunaC in Uncategorized.
Tags: Burlington, Craft shop, model planes, puzzles, Sharon
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On the way back, we saw a sad sight…Frosty, out stranded in his field.
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.
Tags: cemetery, Heart Prairie Church, Natureland Park, photography, Whitewater lakes
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!
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!
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, 2014Posted by Stella☆LunaC in to liver transplant and beyond.
Tags: incisional hernia, liver transplant
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….
Terminal Velocity | The Liver Disease Crazy Train Process March 22, 2014Posted by Stella☆LunaC in A Stitch in Time | Patterns, Mike's Big Adventure in Liver Transplant.
Tags: Alzheimer's, Cirrhosis, Hepatic Encephalopathy, Minions
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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.
Round 3, enough already…. March 17, 2014Posted by Stella☆LunaC in to liver transplant and beyond.
Tags: incisional hernia, liver transplant
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.
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.
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.
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….