You all are so good to me!

Hi everyone,

Just wanted to check in and say, yes, I’m alive!  I haven’t posted in a few days because things have been getting pretty crazy over here while I’m starting to feel better and have my driving privileges back!  🙂  (And what part of that would honestly shock you?)

Health-wise, my incision is SO close to being closed… just a few more days, I’m guessing.  I’m losing a ton of weight due to the meds and my body’s adjusting – I’m just not that hungry.  Ever.  I’m going to call the team about it this week.  I bought all new clothes, and now even they are getting to be too big.  I’m honestly a little worried since I’ve lost over 20 pounds compared to where I was before the surgery.  We’ll see…

I’ve also been working on getting my sleep adjusted.  I have to be on steroids for life since what I had before the transplant (PSC) is anti-immune, and steroids can prevent it from coming back.  If I would have had something not anti-immune, like hepatitis, for example, I wouldn’t have to be on steroids, but unfortunately PSC can definitely be anti-immune.  And a major side effect of the steroids, even though I’m at the lowest dose, is that it can keep you wide awake.  I take it in the morning, and I’m still wide awake at night, so we’re trying sleeping pills, “sleep hygiene” (eg, don’t do anything in bed but sleep – no TV watching!, don’t do anything intense before bed, drink warm milk, etc…) and lots of other fun stuff to combat that.

In much happier news, I wanted to thank a sweet new friend I made on etsy who made me this beautiful quilt and sent it to me all the way from Pennsylvania.  Check out her shop or order a custom quilt!  What a blessing from a sweet sister in Christ.  Thank you so much Courtney!  It’s perfect and so warm and cozy, too!  🙂

quilt1

quilt2

Then, my 1st grade teacher Mrs. H. sent me a goodie basket complete with homemade buckeyes, Hershey kisses, homemade apple butter, and all kinds of good stuff!  She has been so supportive since I started this journey, and she was one of the best teachers I’ve had in my whole educational life.  I’m so glad we’re still in touch!

applebutter

jan

Check back Monday because it’s a special date and I’ll have a post up.

And check out the homepage of TRIO (Transplant Recipients International Organization) – they used a photo from the Akron-Canton chapter of TRIO’s website (which I made!) and it’s of me and my TRIO friends at the LifeBanc walk/run last summer.  We’re now internationally famous, haha.

Have a great weekend!  It’s super chilly and cloudy here in Ohio.  Almost all the leaves have fallen, and I’m so excited to get my pink tree and Willow Tree nativity set up in just a few weeks!  Also, I start nannying again this week and am so excited to be with my kiddos again.

Don’t forget to check back Monday.

Love to you all,
Amanda

TRIO

TRIO is an independent, not-for-profit, international organization committed to improving the quality of life of transplant candidates, recipients, their families and the families of organ and tissue donors.

Through the TRIO Headquarters and a network of chapters, TRIO serves its members in the areas of: Awareness, Support, Education, and Advocacy

I recently joined the Akron-Canton chapter of TRIO and am honored to so quickly become their Webmaster and head of Social Media Relations.  I loved completely redoing their website – check out our new Akron Canton TRIO website here.  I also made our presence on Twitter and Facebook so please follow our blog, Twitter, and Facebook page! 

The best part about TRIO is our monthly support meetings.  If you are on the list for a transplant, think you may qualify for a transplant, are a living donor, family of a donor, a support person, medical professional, or are simply interested in the transplant process, you are invited to come to a meeting.  More information is on our website, but we’d love to see you join us.  We go to events and advocate for organ donation, and we go to events by groups like LifeBanc to try to recruit (and therefore help) more people.  We have an annual picnic and holiday party, and we support various other charities.  But most of all, we are a group of people who have been though the transplant experience and can lean on each other whenever we need.

On August 8, we had our annual Celebration of Life picnic, and although our attendance was low due to vacations, other plans and parties, etc., we had a good turnout and a wonderful time!  Here are some of my new friends:

TRIO Picnic, Green, Ohio From L-R, Randy & Robin Pelton, Craig & Beth Gohlke, Rosie Price, Mary Fread, Keith Goodwin, Don Gordon, Ray & Susan Golden, Amanda Goodwin, Heather Golden, Ray Hamlin, Pam Goodwin, Ben Wallace, Nikki Goodwin, Dick & Joan Becherer.

I’m so excited to be a part of this huge international group, and I’m excited to be helping our small chapter grow.  I’ve already received so much guidance and support from the members, and the organization is near and dear to my heart.