Liver Transplant Recipient
THE BEGINNING -
September 18, 2018 - I'm a 36 year old with end stage Autoimmune Hepatitis and an inevitable liver transplant. Here's my story.
First of all, apologies for being a bit distant on and offline. Those who know me, know that though I’m relatively a quiet person, I’m not that quiet. There is an explanation, and that is I’m facing a liver transplant as a result of cirrhosis and inflammation of the liver stemming from a genetic, non-alcoholic liver disease called Autoimmune Hepatitis.
It all started in February 2018 while living in GA. I went from essentially sprinting up 3 flight of stairs to barely being able to make it from the car to the stairs. While I’ve never been a thin person, active, but not small, I noticed I was putting on weight but only in my stomach area. Like any one woman, I took it as bloating and kept moving along. Then breathing became an issue - to the point to where talking was hard. March 6, I woke up, literally rolled out of bed, looked in the mirror and this is what I saw - 309lbs.
Keep in mind that 254 was my average weight at the time.
I booked it to the ER in Douglasville and for the first time I heard the word, “ascites” - an accumulation of fluid In the abdomen that’s typically related to cirrhosis of the liver and end stage liver disease.
Because I’d just moved and had not yet moved my insurance from MS to GA, I came back to MS in March under the care of The University of Mississippi Medical Center (UMMC) Grenada and Jackson.
After countless rounds of tests, scans, and bloodwork, I was diagnosed with Autoimmune Hepatitis and a liver transplant was inevitable sooner than later. The problem however was that I had SO much fluid in my body that merely recovering from anesthesia during the transplant was a crap shoot, and the fluid immediately going to my heart during surgery, was an unpredictable occurrence. So, the transplant team took me from 100-0 with my salt intake and prescribed a very high dosage of diuretics, and that’s when the flood gates opened, but for some mysterious reason I still wasn’t dropping the fluid like I should have been. By the way, almost weekly I was also having fluid manually drawn from my abdomen area and right lung with nearly 4-6 liters each time from each area.
In the following weeks, I went to the ER in Grenada after fearing food poisoning. Well, I didn’t have that, but I did have Sepsis, a life threatening bacteria that enters the bloodstream through an open wound and eventually damages organs. I was immediately transported to Jackson. After nearly two weeks in the hospital and, strong intravenous antibiotics and the care of amazing transplant team and hospital staff (Shout out to Peggy on 2nd floor), I was discharged with two additional weeks of antibiotics and a lot of instruction. Ideally, I would have had a nurse come daily to give me antibiotics via a picc line, a peripherally inserted central catheter, but again because of the fluid, the needles would not stay in. Fluid was literally pushing them right back out. Zoom in on some of photos, you will see what I mean.
Cleared of Sepsis and packing an even higher dosage of diuretics, the fluid began to exit ridiculously fast, and in a matter of weeks, I dropped over 120lbs of pure fluid, taking me from a miserable 340lb to 220s. I was happy about this, but boy did it take a toll on my body fatigue wise.
[CONT.] Fast forward to the present day. If you see me now, you’ll see I’m doing much better - breathing, able to walk (and occasionally drive), able to TIE MY SHOES.... all of the little things in life.
I thank God for the privilege to work from home (Looking at you, HD!) and while I’m working and things are ok financially, I’m not consulting at the capacity I’m accustomed to because I do get tired and fatigued now, and as this process progresses and my transplant is scheduled, there will be 3-6 months of recovery time including a large window of time when I will be doing very little work.
This brings me to this fundraiser. So many of you have asked what you can do to help, here’s my answer - consider contributing to my fundraising campaign. The average costs of a liver transplant is upwards $600,000 - $800,000 for the transplant itself, and I expect insurance to cover most of not all of that cost. However following the transplant, I’ll be back and forth to Jackson (3hrs round trip), on expensive anti-rejection medication, and well.... that life thing and its everyday expenses. Those of you who are local know that I traded my SUV for a car. That, too, was a forward-thinking decision to gain better MPG and to ensure transport reliability. I knew there would be a time when I wouldn’t be able to be concerned about maintaining an aging SUV.
So there you have it. You now know why I’ve been a bit quiet and also what’s going on with my health. You now know why I’ve opted to text rather than talk (I was easily winded and short of breath). No. It wasn’t you. It was me. But now I’m getting my swagger back (I never lost my sense of humor) and I’m in a better position and condition to have a successful liver transplant. I’ve been approved by the transplant evaluation team, so now just waiting on insurance to approve payment.
THE MIDDLE -
December 8, 2018 - the day my life changed again, or I like to officially call it now - Part 2, I successfully became a 37 year old liver transplant donor recipient. After months of hard days, uncertainty, and one crazy close dry run, it finally happened. The Transplant Team nurtured my health during the waiting, through the surgery, and now, life forward. As my surgeon Dr. Koller said, my successful transplant was a direct result of a cohesive 360 degree, team effort. The better the health going into the surgery dictated the outcome of the surgery, and the successful transplant baton gets handled to the next team to assist with full recovery and a long, healthy, and full life ahead. I can’t be more filled with gratitude. Yes they are my care team (from the custodians, doormen, cart drivers, transporters to the medical staff on the floors), I’ve gained too many family members to count.
Now we go forward. As you know, anti rejection meds are a lifelong must. They are what keeps my immune system from seeing my new liver as one big germ that isn’t supposed to be there and help to turn up and down the cover this but not that knobs when I’m exposed. So your contribution and continued support helps to fund this part at least until I’m back on my feet and can dive back into client projects, responsibilities, and obligations. So again, I say thank you for making this journey with me. Thank you for being present in the ways your heart or God’s whispers encourages you to be, and please know the overwhelmed and overjoyed place of gratitude from which I speak.
Off to the races - One. More. Time.