Hi.
I started this small ask unexpectedly, and I need to give a little backstory first. The truth of the matter is that I was diagnosed 4 years ago with End Stage Liver Disease (ESLD) & I WILL need a liver transplant, but no one can say WHEN or HOW that will happen.
I have had to prepare myself mentally and emotionally for every possible outcome, including palliative care and death.
I was approved for a "living donor liver transplant" by Johns Hopkins in November 2023, but the donor search has been unsuccessful.
Over the last 4 years I've had multiple procedures and multiple surgeries. I won't get into the details right now, but I am happy to share. I am 100% transparent...an open book. You can ask me anything.
I can count on one hand the number of people who have stood nearby for me when I need their heart or mind as support throughout the hospitalizations, surgery recoveries, the good news and the bad news moments.
The people that I love KNEW and KNOW that I love them. Every time.
The most difficult part was being unable to work most of that time. For a myriad of reasons.
Not qualifying for Social Security. Waiting years for a "No" from Disability.
Apparently, being an ambitious, entrepreneur Gen X-er can come bite you in the ass before retirement.
Not having income is extremely hard.
My savings was eaten up years ago. The system is expensive and overpriced. There's also the cost of medications, etc. That are not covered by insurance. That's another financial battle. Some I've had to go without the benefit of because I couldn't afford them.
Sometimes not physically working is worse. Not having a job lead me to strange, unexpected feelings to process. It's odd because some of us will begin to have a different view of ourselves, a melancholic perspective of our place in the world. A view of yourself that is no longer familiar but was caused by illness & disease. We don't realize how important we hold our status and contributions to the world around us until it's taken away.
ALL of us have lost people close to us within the past year. From the deejays we admired in our twenties, then became friends with... to our grandparents, and our parents....for some of us, our best friends or siblings are gone too soon.
It's more frequent the older we get. I know I'll be one of them, eventually with the "Gone Too Soon" or "I remember the first time I met her..." plastering my Facebook page. I've always thought it's a shame that we don't say much of this to people while they're still around. I think about this because I may be one of those people that's here today and gone tomorrow.
Ever since my initial hospitalization, I've made it a point to do that. It changes you. Being told to get your affairs in order. That you probably won't be going home. It really does.
I believe it comes from knowing that I could die any time now. The most probable outcome for me would be an unexpected tip to my condition leading to re-hospitalization, a rapid decline and becoming too sick for surgery by the time a liver becomes available, if one does.
I've been told I might have a decade left. 4 years ago I was told that I had 2 years left. 2 years ago I was told that I might have 10. I've also been told that I won't make it to 60 - 65 without a transplant.
I've never been one to ask for help. I have been through a variety of life struggles and always pulled through, somehow, on my own. I know what a supportive family LOOKS like, but not what it feels like to have one.
It's hard for me to ask for help.
Especially financial help.
However, that's what I'm doing here.
What is it for? LIVING. Exactly that. So that I can feel like I can actually live a little bit instead of sitting around Existing or Waiting to die. That latter feeling is the worst. Making it through something terrible and still being alive is great. We congratulate people. We're proud of them and happy for them.
But there's a BIG difference between 'being alive' and actually 'living'.
As my disease is progressing, HE (hepatic encephalopathy) is a common symptom and can progress along with the disease and majorly disordered sleep patterns. It's a bit of a Catch 22. I'm on Rifaximin to help stave it, but I'm scared. I'm scared that a year from now, or 2 years, it'll be bad. I'll act different, won't be able to drive and/or will have decreased cognitive function. I'm afraid I'll say "I wish I'd done that a year ago" or "If only I could have afforded that back when I was well enough to enjoy it...or well enough to actually DO it". I'm definitely scared.
With any luck, I can start working part-time again soon, for however long time allows, but not so much that I lose my health coverage. I'd love to pay it back however I can. Or even pay it forward.
I truly appreciate you spending these few moments of your life getting to know a little bit of mine.
And PLEASE. Tell the people you love how much they mean to you.
NOW.
It's never too early, but it can often be too late.
cortney
