Liver Disease Ain't For Sissies!


Nov 30, 2009
Well fellow traveler through life I guess it's time for my friends at US Aviation to be introduced to something I've been writing since last August on Facebook. So here is the latest installment of "Liver Disease Ain't For Sissies"
Today I'm 56 days post transplant and I still have some pain, not much but some. I have something called a T-Drain which seems to be the cause of discomfort.
During liver-transplant surgery, the surgeon may find it necessary to place a small tube, called a T-tube, into the bile duct. The T-tube allows bile to drain out of the patient's body into a small pouch, known as a bile bag. The amount of bile, which varies in color from deep gold to dark green, can then be measured. If a T-tube is put in place, it may remain attached to a bile bag for a week or possibly longer. When the bile bag is removed the T-tube will be tied or capped. It will remain in place for several months so that it can be used for special testing.
I know TMI right?, however part of the reason I write this little posts is to educate and encourage others to sign an organ donation card and for my sanity as writing these epistles seems to help me cope with everything that has/is and will happen.
I do have a bit of a cloud on the horizon. My pancytopenis has not significantly improved. Blood is composed of three cell types, Red & White blood cells and Platelets. When all of them are well below normal it's called Pancytopenia. Treatment will consist of two things. If my iron levels are low I will require iron infusions followed by weekly injections of something called Ipogen. All of my extremities are cold as a result of this and it appears to be the latest hurdle. However it's not an unusual occurrence so no panic here. Thanks to all of you for your support and love as I move closer to the day when I will be able to do the things I love. God bless you all
Serious question here Bob. Did your airline retiree care cover the cost, or are you on the ACA or SSDI/Medicaid?
Serious question here Bob. Did your airline retiree care cover the cost, or are you on the ACA or SSDI/Medicaid?

I was a customer so NO on airline retiree! As to SSDI/Medicaid - YES

It has been a struggle but not so much financial as emotional. Honestly Glenn in some ways the surgery is the easy part.. I had FOUR false alarms which can really mess with your head. Drive the 1.5 hours to Thomas Jefferson University Hospital and get admitted, prepped and then some 4 to 6 hours later the surgeon comes in and says "I'm Sorry Mr. Johnson but the liver wasn't transplantable, get dressed".

Post op is a lesson in medication management as I take a ton of antibiotic and anti rejection drugs! I am happy to report that I have few side effects if any. Slowly over time the meds will be reduced to two or three for the rest of my life. It's a hellava journey but so far it sure is worth it. Life is so much sweeter now. Thanks for your concern Glenn it means alot.
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Take care Bob. I'm dealing with some serious medical issues today with a very close family member.
Sparrow', you've have been and are still going through a lot,..B U T in my opinion, and GOD knows the ol' BEAR has a Zillion opinions, YOU are one tough 'mammy jammer'. Always remember. Only the Strong Survive. I rest my case !

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