Wrestling the Monster: Living with Hepatic Encephalopathy, H.E. February 26, 2014Posted by Stella☆LunaC in Mike's Big Adventure in Liver Transplant.
Tags: Cirrhosis, HE, Hepatic Encephalopathy, liver disease, 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, 2014Posted by Stella☆LunaC in Mike's Big Adventure in Liver Transplant.
Tags: Cirrhosis, liver transplant, PBC, rehab
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Mike completed PT Rehab on Wed, we sorta “graduated” and were cut loose by Jim, his PT. Now begins the rest of our lives!
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…
We are Survivors- The Perfect Storm February 2, 2014Posted by Stella☆LunaC in Heart Notes, Mike's Big Adventure in Liver Transplant.
Tags: Cirrhosis, storms
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!!
The ongoing saga of The HELLthcare Marketplace January 23, 2014Posted by Stella☆LunaC in HELLth Insurance, Life Death and Taxes, to liver transplant and beyond.
Tags: healthcare, Marketplace, obamacare
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Nov. 15, 2013: I began filing for healthcare coverage at healthcare,org. Due to overwhelming response to the website, it took 3 separate sessions with my insurance agent who was gracious enough to have me in his home and try to get through the application process together. We would get to the plan-choosing stage, and when we went to save our changes, “website services are not available”. ARGH!!!!!! He got so far as finding our subsidy amount, and applied it to our premium and got it saved. I left his office on Nov. 26 and promised to get it done by end of month.
Nov. 28: I stayed home from the hospital the day after Thanksgiving; Mike had Rehab to do, and we had just had a nice visit the day before, and brought Thanksgiving dinner to the Rehab Center. I needed a break from the prep and running and needed to get the insurance application done. I came back online, finally got the application process almost complete, until I got to the payment page. There, I was instructed to wait for a letter from the vendor to facilitate payment. On Dec. 24 coverage through our current insurance Provider, HIRSP, was extended to Jan. 31, 2014
Dec. 4: I called Anthem BCBS asking if they had recieved my application from the Healthcare Marketplace yet. They had no record of the application, explaining that there were so many, the Marketplace had not sent it forward to them yet.
Dec. 11: I got an email from HIRSP with an option to extend our coverage through Jan. 2014. There was a legislative extension given to HIRSP, to help members who needed more time to get coverage, and they could not change our effective date. I made my payment and got an extension through Jan. 2014.
Dec.13: I got a letter from Anthem BCBS, stating that they received our application, and asking for payment on the first month premium, beginning Jan. 1, 2014. I called and was ready to give them my card information, but they were not able to take our payment, because I was asking for a Feb. 1 effective date they could not change.
Jan 4: I called Anthem BCBS to check the status of my application. They then connected me to the Marketplace via conference call, twice (we got disconnected once) to explain to them what we need. The Rep for the Marketplace had to put us on hold, consult with his Supervisor, then came back to tell us that I was to make my payment by Jan 15, for a Feb. 1 effective date. The Anthem BCBS girl assured me she would call me back on Jan. 15 to take my payment then. Jan. 15 came and went, no call.
Jan 16: I called Anthem BCBS, asking if they can take my payment, and once again was told I need to contact the Healthcare Marketplace to confirm the Feb.1 effective date change, as they could do nothing at their end.
Jan. 17: I have called the Healthcare Marketplace to see if they can help me get my effective date set to Feb. 1, 2014. The Rep was very courteous and helpful, taking things slowly and step-by-step through an escalation. He told me I would get a phone call from HCM (within 5-7 days) and I am to explain my circumstances to them again so they can approve the forward effective date. So now I wait.
Jan. 23: phone call to Healthcare Marketplace, for status of escalation. No record or notes pertaining to call on 1/17. Resubmitted to Escalation Dept. for callback 3-5 business days.
Canine Megaespohagus January 20, 2014Posted by Stella☆LunaC in Dog House.
Tags: Canine Megaesophagus, Igor, regurgitation disease
I took Igor to the Vet today, as a followup to his Chicken Bone Incident last Sunday.
I was concerned about his frequent bouts of “coughing” or “ghacking” as I call it. He would *cough*cough*hack! but nothing would come up.
They checked his weight, 62.4 lbs, great, he hasn’t lost, and is in fact on target for his winter weight. They had him back there for several minutes before Dr. Jeff came back out and sat down to show me his findings. I got to see what Igor’s Xray revealed: he has a ballooned esophagus, with a shadow on the left middle lobe of his lung (aspiration pneumonia?), a slightly elevated temp of 102, and weighted in at 62.4 lbs – 2 lbs over normal.
two things in his favor:
1.) he hasn’t lost any weight yet. he is actually holding winter weight, a couple pounds over normal, but he is also full of shit, literally. His Xray showed a full colon. 2 lbs is normal for him in winter, inactivity weight gain.
2.) He isn’t regurgitating. There was food in his stomach from 2pm, 1/2 cup of steamed rice with a little chicken. So, that means the food made it down to his stomach OK. His esophageal lining was almost indiscernible, which Dr. Jeff thought odd…possibly stretched out thin from the current state of ballooning.
Tomorrow I have to take him in at 8am so Dr Jeff can send some barium laden food down his esophagus to see if there is any peristalsis or if it just hangs in process….
I am thinking that he has had this for some time, because whenever he drank water, he immediately coughed for a couple minutes. SO, back in Sept/Oct I put his water bowl up on a small cooler, level with his food dish, to alleviate swallowing any air….. it seemed to have helped.
We will find out more tomorrow…wish us luck!!
your bike picture of the day. January 19, 2014Posted by Stella☆LunaC in HarleyWood.
Tags: Harley-Davidson, Sportster, Stella
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When is this snow gonna end, already????
Still a long way off, but always ready to rumble!
Thank You……. January 3, 2014Posted by Stella☆LunaC in Uncategorized.
Tags: Cirrhosis, donor, liver, transplant
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I just want to say Thank you, wherever you are. Through all the twists and turns of this long rough year, I never stopped thinking about you. I wonder who you are, what were you like, what was your favorite food, your favorite song, your pet’s name, what color were your eyes, who is missing you on this peaceful night….Your light went out too soon, you were the same age as my husband. Now your light will continue to shine on, through him.
Sending prayers out to your family that they may find peace, comfort and good memories as they gather together to celebrate your life and ultimate gift.
You are a part of our family now too, forever….
Home for Christmas, BUON NATALE, HAPPY NEW YEAR!!!! January 1, 2014Posted by Stella☆LunaC in Mike's Big Adventure in Liver Transplant.
Tags: christmas, Cirrhosis, Home, Igor
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Dec. 13, 2013
Mike works out in the gym at Nazareth Health and Rehab Center, Stoughton, WI.
Dec. 22, 2013
120 days post-trx: Mike is home! I can’t believe it, we finally made it!!! It took him 40 minutes to get up the stairs, but he did it, one butt cheek at a time! Poor guy had to crawl to the bedroom using the walker to lean on, the legs just wouldn’t work.
And on Christmas Day, we rested.
He remained in bed for the next week, resting and building his strength back up, only coming out to eat lunch and dinner. On Day 6, he used his cane to and from the bathroom. On Day 7, he went to the bathroom without aid, but got very winded and decided that wasn’t a wise decision. When PT arrived yesterday, he was told he still has milestones to pass, never mind miles. It will take a while for him to rebuild lost muscle and energy.
Labs came on Monday to draw for his Tacrolimus; I forgot what day it was, and mistaking it for Sunday, gave him his Tac 15 minutes before Labs arrived for the draw. Note to Self: next week, wait until after they come, to give Mike his meds.
Our favorite nurse came in the afternoon, Elizabeth, who we hadn’t seen since before Mike’s transplant!
It’s snowing, the roads are a mess. I just got back from getting hot dogs at the store, for chili dogs tonight! If Black-eyed peas are good luck, we can only imagine what chili beads must bring. ) O.o….
Open Letter to Bikers January 1, 2014Posted by Stella☆LunaC in Uncategorized.
Tags: donorcycle, harley, livetoride, transplant
I have had many thoughts roll thru my head today and I will admit several tears when I learned of a mom and dad loosing their son. I truly had to step away, because I know the pain, I know the darkness, I know…But then the smile and little arms of a another child came and so I realized that it is and has been one hell of a ride and I will ride this year out and I will ride just as hard maybe even harder next year, enough rambling. Happy New Years to All. Stay Safe, Be Humble, LIVE and be YOU… Much Love and Respect.