Liver Mamas

“My name is Kai.  My last name is Fairy Princess!” she’ll tell you.  She’s a happy, spunky preschooler.  You’d never know that when she was 4 months old, Kai received a liver transplant because she had biliary atresia.  Her daddy donated part of his to her, saving her life.  Read About Kai on her mom’s blog to get a picture of what a little girl with a life illness is like.  Seemingly healthy on the outside but living a life just like I did at her age – adjusting normal to mean meds, hospitals, tests, procedures.  Growing up thinking that is normal.  Oh, to be that innocent again.  To be too young to realize that your normal is not normal.  Stay young, sweet Kai.  Stay young.

Jasmine, Kai’s mother, keeps a beautiful blog chronicling her daughter’s journey.  I asked if I could share one of my favorite posts of hers, and she gave me permission.  I think everyone needs to understand what mothers/fathers/parents of “sick kids” have to go through.  Now at 24, I’m really realizing that it wasn’t only me suffering for all of these years.  It must have been hell for my parents.  I wonder if some days still are hell for them.  None of us signed up for this, but together, we draw strength, and we get through whatever is coming up next.  I hope you enjoy this post by Jasmine and visit her sweet blog.  I would love to meet the Hollingsworth family one day and give Kai a big hug.

Watch this sweet video of Kai…

Now without further ado, here is “Once a Liver Mama, Always a Liver Mama” by Jasmine Hollingsworth.  I dedicate this to my Liver Mama – you know you’re not alone.  Thank you for always fighting for me and for never leaving my side.  Only a few months until you’ll be a Liver Mama of 20 years.  I love you, Mom.  I wish you could be some other kind of mama, but I’m glad I was blessed with you.  I can’t imagine going through these years with anyone else by my side for every single moment of fear, all of the pain, and even the bright beacons of hope.  We have a unique relationship because of the battles we’ve fought hand in hand for 19 years, and I treasure you all the more for it.

As I sit and keep a distant, online vigil for a baby and a family I have never met, I am forced to reflect.
 
Liver Mommas: We support each other. We share our stories, our joy, our pain, our disappointments, our triumphs, our hope, our advice… But, most of all, we share the experience of having a child with a life-threatening liver disease, more often than not, leading to transplant and the life-long trials and complications that come with that.
 
When someone announces “THE call has come; a match has been found!” We rejoice. Those of us who have been through transplant feel the excitement, the anxiety and the rush of conflicting emotions that we remember from our own experience. Those who have not, I imagine, feel the excitement and hope, fear and longing that goes with the waiting and watching your child grow more ill. 
 
When we hear “There are complications, we need prayers!” We bow our heads and fervently whisper words of love and hope to be carried to heaven, knowing the fear and the way time freezes as you wait to hear that, hopefully, everything will be okay.
 
Sometimes, with a profound sadness that cannot be expressed, we receive the devestating news that a tiny spirit was too great for this earthly world and was called to heaven. Those of us who have never experienced this have a mixture of emotion… grief for the life lost and the family, a desire to reach out to comfort where we know there can be none, a gripping fear in the knowledge that our story could have followed the same path (and maybe still could), guilt that we were “the lucky ones”, and a renewed appreciation for the life of our own children and each day we are blessed to spend with them.  
 
To those of you waiting, we know it seems endless. We remember the hope and we hope with you. To those of you recovering, it’s a long road, but you and your child will get there. One day you will look back at how far you have come and marvel at all that has been accomplished. To those of you who have come out pink and rosy on the other side, we celebrate and cherish each day with you, knowing that tomorrow could bring new challenges and fears. To those of you who have experienced the loss of your precious baby, I have no words of comfort; saying that I’m sorry for your loss does not even begin to adequately cover the depth of my empathy. 
 
I can say this, though: Once a Liver Momma, always a Liver Momma.

Genetics

I didn’t particularly enjoy Genetics class in college, but it was interesting, and the material was very relevant to not only being a nurse but being a human.

Last week, I revisited the subject with a genetic specialist at the Cleveland Clinic.  With my sister’s impending wedding, I decided it was time to bite the bullet and go figure out if the liver disease was anything that would now run in our family.  I’ve seen what Primary sclerosing cholangitis can do to a person, to a life, and I’ve seen what it can do to a family.  I wouldn’t wish this upon anyone, God forbid my nieces or nephews, my sons or daughters.  I’d rather die than watch this play out in the life of someone I love, and whether true or not, I would blame myself.

I’ve been dreading the answer to this question for years, so my sweet friend Lauren insisted she go with me to the appointment just in case the news wasn’t good.  I was so impressed with the doctor, Dr. Rocio Moran.  Waiting months to get in to see her was worth it.  She had read up on my history beforehand (even “Part 2” of my paper chart!) and knew exactly what PSC was.  I had done research myself and knew that PSC was a mystery to geneticists. 

Doctors and scientists currently believe it is partially caused by a gene, or genes, but the gene/s must be turned on by an unknown environmental factor.  That doesn’t provide any answers to anyone.  PSC has been seen to run in families, but the cases are extremely rare.  More often than not, it comes out of no where (like in my case) with no relation to liver disease in anyone else.  It usually accompanies ulcerative colitis, which I had as a child but have been confirmed not to have anymore.  (Which statistically never happens.  We thank God for a miracle!)  Additionally, the majority of people with PSC have the cystic fibrosis gene, but having the CF gene does not mean you have the disease.  (CF is a serious, life-threatening lung disease that often cuts its victims lives extremely short.)  A huge percentage of people carry the CF genes, but a person can only get CF if both of their parents carry the gene.  There is a 25% chance they will have it only if both parents have the gene.  Relatively, that’s a very high risk.  I’m going to get tested for that just in case, but if it comes out positive, it just means whoever I decide to have children with needs to be tested as well.

So for PSC… If it was caused by a single gene, which we do not know for sure, then my children will have a 50% chance of getting it.  However, that is not reality.  PSC is rarely seen to run in families.  As for my sister, the chance her children will have it is less than 1%. 

I was disappointed that I did not receive any real answers, but I was excited that Dr. Moran told me about a research study that Mayo Clinic has been working on for over a decade.  It’s called PROGRESS – PSC Resource of Genetic Risk, Environment & Synergy Studies.  To participate, volunteers with PSC must answer some questions and submit a blood test.  Their DNA is obtained from the blood sample and “frozen in time” so the researchers can analyze and compare everyone’s DNA, looking for any commonalities.  I eagerly volunteered for the study as soon as I got home from my appointment with Dr. Moran.  I’m hopeful that one day, there will be answers about this terrible disease.  There will be fewer people dying of cirrhosis, fewer people enduring liver transplants.  Fewer people living with the burden of a disease with a variable and unsure prognosis, fewer people living in fear of the unknown, dealing with waking up with a chronic illness –  every. single. day.

Helpful “sick chick” links + an update

Since I have to take my BP, pulse, weight, and temp daily, I was excited to find some sites with pre-designed medical documents you can download.  Plus some are very nice and can help you record so much more!  I thought I’d share since some of you are also transplant patients, and 1 out of every 3 Americans has a chronic illness.  (I learned that in the Ashland University class that I was a guest panelist on, last week.)

First of all, I use Google Docs to keep track of all my vitals I take every day.  I have it set up so it averages them on the bottom row.  It takes too much time to log on, record each value, and log off, so I keep a couple of weeks’ worth of vitals in a tiny notebook and record a large amount at once.  It’s more productive that way.  If you’d like my document, let me know and I can try to figure out how to let you have your own blank copy.  🙂

I love My Med Schedule.  Their “claim to fame” is reminding you when your meds are due to be taken, but I like using it as a comprehensive list of my meds that I can print off every time I see one of my doctors.  (It makes a beautiful, easy-to-read, print out.)  If I get confused when filling my pill box weekly, I can also pull it up online or on my phone real quick and make sure I have the right amount of the right pill.

AmericanMedical-ID.com is where I’ve purchased a few things like Medical History cards, things to put in your wallet, etc.  You can also buy medic alert bracelets here, but I got mine somewhere else.  (Would you believe I bought the pink one?)  They have fabulous downloads including a medical history form, emergency information form, allergy listing, medication refills, headache diary, pain med taken, blood sugar levels, BP readings, seizure record, and insulin injections.  Something for everyone!  Oh, and you’ll get PDFs you can actually type in – no more sloppy handwriting to show your doctor!  🙂

Are you “healthy enough?”  Well anything can happen, and the American College of Emergency Physicians needs you to keep a copy of their documents at all times, should any emergency strike.  As a nanny, I must stress – if your children is in someone else’s care and something happens, you MUST fill out a consent to treat form, which gladly is on this site.  Without this prior authorization and imperative information, your child cannot be treated.

Not a fan of the overall site, but Blue Healer has some forms as well.  There’s a thorough prescription list, a to-do list, and a pain tracker… with more coming!  

One last plug – I got this as a gift after my transplant and it’s really helped my emotional healing.  It’s a book entitled My Recovery Journal that doesn’t look like much on the outside, or even inside, but the prompts are very fitting and therapeutic.  You can buy it from the publisher here.  I don’t write in it every day, but I try to often.  It asks me about the weather, what my friends are doing, how I feel, what I’m looking forward to, what I’m worried about, the best and hardest parts of the day, people who helped me to feel better, and plans for the next day.  They really are uplifting questions, and I recommend this to anyone with a chronic or longterm illness/disease.  It’s a perfect gift  🙂

I think that’s it, but I think they’re all really good resources you should check out.

Be well!

Amanda

PS – I got discharged from Home Care on Tuesday!  My top ripped-open-insision is 100% healed, and the bottom is getting closer!  Hooray!