A Brief History of Geri's Liver Disease Journey, and the Latest News

Bringing you up to speed: I'm gonna leave out a lot of the dramatic details and ups and downs and repetitions here and try to tell you this very long story in as little space and time as possible.

In late 2014, my wife Geri was diagnosed with cirrhosis of the liver. Turns out she had had NASH (nonalcoholic steatohepatitis, also known as fatty liver disease) for some time, and the cirrhosis had developed out of that.  Coincidentally, her mother had (and eventually died of) the same thing(s).

Following her diagnosis, Geri got so sick she was in and out of the hospital and could no longer work even when she was out, so she had to quit her job around March or April 2015 and file for early retirement.  (She was due to get her full, normal retirement in September, but there was no way she could make it that far). 

She spent much of 2015 in and out of the hospital, seriously ill.  Monthly and then weekly she would have to have a paracentesis to eliminate fluid that was accumulating in her abdomen.  The Cleveland Clinic team would drain 6 to 9 liters off and she'd feel better; but it kept coming back and within days she'd feel much worse and they'd have to do it again.  Finally, they had to do something more. 

On September 11th 2015 they installed a TIPS (transjugular intrahepatic portosystemic shunt) in her hardening liver, artificially connecting her hepatic and portal veins, and it made a huge difference almost immediately.  It stopped her from retaining dangerous amounts of fluid and allowed her to feel pretty good and lead a more normal life again.  They told us the TIPS might last one year or five but that it was only a temporarily fix. Eventually she would still need a liver transplant, but they hoped to put that off as long as possible.

Around August of 2016, almost a year after that procedure, she started getting very ill again.  They suspected the TIPS had narrowed, become plugged or otherwise stopped working (as we always knew it would).  But now, fluid began accumulating in the pleural space in her chest, filling to the point where her right lung couldn't expand and she was short of breath all the time.  They would do a thoracentesis to drain the fluid so she could breathe, but soon the chest fluid would return and they'd have to do it again.  Soon she had to use oxygen at home and a wheelchair to travel more than a handful of steps.

The more often they had to stick a needle in her chest, the more the risks multiplied, so they wanted to do something more than just keep draining it.  Her doctors then decided to expedite getting her on the liver transplant list.  She would have to be checked out by every kind of specialist under the sun before she could be listed, to make as certain as possible that a transplant could be successful.

She was almost through with that process when she had to go to the hospital again this most recent time.  While there, they drained 1.6 liters of fluid out of her chest for immediate relief; but her sodium level tanked so low (among other issues) that they had to put her in ICU. They then did a TIPS revision procedure, essentially going in through a vein in her neck to reach the shunt in her liver, then putting two stents in there to keep it open and allow fluid to pass through again.  It was supposed to take about an hour, but ended up taking closer to five.   And it seems (so far) to have been successful. In the best case scenario, this is still a temporarily fix, because although the TIPS allows fluid to move through her liver and be eliminated by her kidneys again it doesn't resolve the fact that her blood/fluid are no longer being filtered by her liver.

After getting her chest drained, the TIPS fixed and her electrolytes back in order, she felt like coming home again, and the doctor released her straight from ICU on the condition that she have someone at home to help her 24 hours a day for a while.  But soon after she came home on Saturday the pleural space in her chest became full of fluid again, making her miserable, and I had to take her in for another thoracentesis yesterday.  This was half expected, as the body can take up to a week to adjust to the TIPS working properly again.  This time they drained another 2.6 liters of fluid from her chest, and she said afterward that she feels like a new person.  This allowed both of us to finally get a sound, uninterrupted sleep last night.

Now, she's been cleared to get on the transplant list by every department but one.  That one is gastroentrology, contingent on a colonoscopy, which is happening early tomorrow (November 17).  Hopefully, it will go perfectly and we'll be on our way to getting a liver.  Meanwhile, today she's consuming nothing but clear liquids and Movi-Prep.

In other news, I got a letter from the Cleveland Division of Taxation this week about an audit, threatening that if I don't get a ton of paperwork in to them by tomorrow, they're gonna start criminal proceedings against us and charge us over $21,000 for unpaid taxes, interest and fees that I'm certain we shouldn't owe. So I need to quit writing this blog entry and get back on the task of addressing that.

More soon. Thanks for all your good wishes, care and support!

Peace, love and poetry,
John