The University of Utah Appointment

On January 24th and 25th we went up to the University of Utah to the Liver Clinic there to start the process to get on the transplant list.  this is a 2 day process, the first day we met with his Coordinator, the financial adviser, the surgeon, the Hepatologist, the nutritionist, and the social worker.

This is a very overwhelming experience, with each person we met with there were things that we needed to do or to stop doing, eat this food stay away from this food. I think the hardest person to meet with was the Social Worker. the questions she asked and the things we talked about were things that I wasn't ready to deal with. She asked questions like are you ready to care for Mike 24/7, how am I supposed to have a job and take care of him. The social worker asked about my mental state and Mike's mental state, can we emotionally go through this. we learned that we will need about $25,000 for the pre and post transplant. we are setting up fundraisers through some websites.

The Surgeon talked about how Mike might qualify for a Living Liver Donation. They would take half of the Liver from someone who is a match and after removing Mike's liver they put the donors liver in Mike and within 6 weeks the liver has regenerated itself 90% . I find it so fascinating that the liver can do this. This is a very exciting prospect, if he qualifies he could have a new liver in 4-6 months.  If he doesn't qualify they are thinking hopefully he will get a new liver within a year. the biggest issue he has is his Kidney.  His kidney is showing signs of distress and if it keeps getting worse he will need a Liver and Kidney transplant.

When we were talking to the Hepatologist his main concern is the fluid build up and the hepatic encephalopathy, this is the condition where the ammonia in his system builds up and he loses his Mind. Mike needs to be drained every 2 weeks right now. they are taking 4-6 liters every time he gets drained.  The Dr talked about a procedure they can do, they would put a shunt in his liver, connecting the 2 arteries in his liver, this TIPS will help with the fluid but the trade would be the hepatic encephalopathy would get worse.  Mike is so excited about this procedure but I'm not sure. I know its not my body and I cant imagine what its like to be so full of fluid you cant eat and breath but the alternative is so scary.  He loses days when the ammonia gets high so he doesn't realize how hard it is on me and the kids. they also took like 30 vials of blood to get all the testing done.

Over all the first day was a success, the second day didn't go as well.  The first procedure mike had was a stress test and a bubble test.  they both went well but because of the meds they gave him it started one of his Migraines so we had to cancel the rest of the procedures and reschedule them for another day.  Once all the tests are done they will be able to tell us if Mike can have a Living Donor transplant or if he will need a full liver transplant.

As overwhelmed as I felt these 2 days I am very hopeful.

Wonder Woman Moments

I have what I call WONDERWOMAN or SUPERGIRL moments. I have always been insecure, self conscious, and anxious, so growing up and even now I have always played the comparison game. Their house is cleaner then mine, they are pretty, skinner then me, you get the idea. When i got married I was going to be one of those perfect people!

About a year ago I had one of those Ah Ha moments where it hits you, I can't be like those other women because we aren't living the same lives! They don't have Fibromyalgia,  they don't have a sick husband, they aren't the soul income for the family, etc. n My house is never going to be spotless, I am not a size 2, and sometimes I have laundry exploding everywhere. 

I decided there were things in my life I had to let go of so I didn't live my life in a negative place because I wasn't that perfect person. 

(A little back story. Mike's ex-wife loves Wonder Woman everyone said she was wonder woman because she was a single mom blah blah blah. I didn't even want to see the new Wonder Woman movie, I didn't want to picture her in that movie...... I know silly right!)

I finally went and saw the Movie and it changed my life, my perspective on Wonder Woman.  I realized I am more Wonder Woman then she will ever be!!!! Just like the things i listed above as a negative they became different in my eyes.  Yes I have Fibromyalgia, Yes I have a sick Husband, but those things make me who I am. 

My Wonder Woman or Supergirl moments are days where I get the house cleaned before I crash, or when I have a job interview while my husband is in the hospital and as much as I don't want to go I go because I need a job to support my family. There are days when I am in so much pain that getting out of bed is a fight but I get up and I go to work, the Hospital, or even get up long enough to make dinner for the kids. 

 I am not like other women, and they are not LIKE me. this has been one of the most freeing things that I have learned. Don't get me wrong there are days that I see them doing things that I cant and it is hard for a moment and then I remind myself that I am a Super Hero and I feel better.  I have Wonder Woman and Supergirl Stickers that I put in my planner on days my Super Hero days!