Back to ICU

Today they took Geri back to ICU so they can be more aggressive in getting her lungs clear - and more attentive.

Commitments, Cancellations

Yesterday I canceled my 17 December reading in Pittsburgh and my April appearance at the 2017 Poetry Throwdown in Kansas City. I hate to let folks down, but I'll need to stay close to home for the next several months. I've also resigned as editor/publisher of the annual Hessler Street Fair Poetry Anthology.  It's been a blast to do it the past two years, but I've needed for some time now to clear things off my plate as we continue my wife's liver transplant journey and I'm devoting most of my attention to her.

I have another 20 titles in my Crisis Chronicles Press to-publish queue, and I still plan to publish those, though I have fallen way behind schedule and the next few months will continue to be unpredictable. I'll formulate a new tentative timeline and contact our forthcoming authors soon, giving them more details, options and so on, including permission to find another publisher if they would prefer (as a few have waited a very long time already and I wouldn't blame them at all for losing patience). But I will definitely get all the books done at some point if folks can endure delayed gratification for an indeterminate while longer.

Thank you for your kindness, support and best wishes.  I'll write an update blog when I have more time at the computer.  I just let our dog out and am heading back to the hospital. <3

Listed

outside the Cleveland Clinic main campus

Geri's resting, so I'm heading home. We're thankful she got final clearance and is officially on the liver transplant list.

Three Bits of Good News Today

1) The doc says that Geri's colonoscopy this morning is clear. That should be the last hurdle before she is officially put on the liver transplant list.

2) Writing Knights Press has just released a new updated edition of my 2011 chapbook Electric Company. Now it's perfect bound with a color cover and includes three poems that weren't in the first edition. If you want a signed copy, please PayPal $8 to me at jc@crisischronicles.com. Postage included in the US.

3) A month or so ago, Columbia Gas dug up part of our yard, including the tree lawn, to lay new pipe. Today they came back to restore and replant.

Leda watches the Columbia Gas contractors

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

Responding to "The Real Bubble is Rural America"

I just read I’m a Coastal Elite From the Midwest: The Real Bubble is Rural America by Patrick Thornton.  Here's my response:

I'm neither coastal nor elite, but a lot of this article rings true to me. I was born in Appalachia, raised to have conservative values, and in high school wanted to be a Southern Baptist minister. I never (knowingly) met a gay person until I was an adult. I never (knowingly) met a Jewish or Muslim person until I was close to 30. At age 18, I voted for Reagan. At 22 I voted for Bush. And at 26 I voted for 3rd party candidate Ross Perot because I had become disillusioned with both major party "establishments" and wanted to "send them a message." My journey took me to college, to managing a gay bar, to seeing the justice system from the inside, and to exploring a number of different denominations and religions before I reached my current status of atheist and thoroughly/proudly liberal. I didn't vote for a Democrat for President until 2004 (when I was 38).

Today, the ascendance of Trump frightens me deeply, and I disagree strongly with his supporters on almost every issue. But because of my experience I do feel I can understand where they're coming from. I was once one of them. I can feel them, even when I believe with everything I am that they're wrong. But I don't feel like they feel me. Indeed in many cases it seems that they don't truly feel anyone outside their bubble. On the other hand, many liberals who've never been otherwise don't always seem to feel those outside their own bubble either. This is part of why I don't defriend or block people who disagree with me politically, even if I find certain things they believe reprehensible. I don't fault others who feel they need to for their own reasons. But I would've never reached this point in my journey if everyone who didn't like me because I was Republican or Baptist or a convict or a Hare Krishna or an atheist or whatever blocked me because they couldn't stand where I stood.

Now I'm 50. Over the years, I've learned and grown much more through connection and communication than through disconnection. And I plan to keep doing so, gratefully.

New review of my The Eater of the Absurd

Many thanks to Michael Marrotti for reviewing my 2012 NightBallet Press book The Eater of the Absurd at Amazon!  He says:

"John is a rarity in the realm of contemporary poetry. The man has a talent for the art form, he's even made me think twice about rhythmic poetry which comes up frequently in this book. I found myself eagerly turning pages towards the next poem. He solidified his rank with me through the poem Fuck Poetry. This is the stand out piece, the pinnacle poem of the collection. It's a poem on writing, which is a subject I've always been fond of. There were a few ambiguous moments, but besides that, the journey was pleasing. John here is worth the time! Do yourself a favor, take a gander."

Check it out at http://amzn.to/2eNqkvM.

Weekend Update 11/5/2016

View from Geri's room yesterday

Thanks to everyone for their concern and best wishes. Sorry I'm so behind on responding to messages. I hope you won't mind a blog/Facebook update for now. Yesterday, they did a thoracentesis and drained 1.5 liters of fluid from Geri's chest cavity, which allowed her lung to expand again and gave her some relief. Now today they're supposed to go in and try to open up the TIPS (transjugular intrahepatic portosystemic shunt) in her liver. They installed it late last year when she was so sick and for around eleven months she was feeling somewhat better, but it's no longer working. There are risks to messing with it (for example, doing so can cause her liver to fail more rapidly). But those risks are less than the risks of other possible solutions to the severe fluid retention and other problems that are drastically lowering her quality of life. Our hope is that they can open the TIPS back up without incident and she'll return to feeling better like she did for much of the past year (though that's a temporary fix) and remain healthy enough to proceed with the liver transplant process.

In other news, my grandson Camren was also at the Cleveland Clinic yesterday, for surgery to remove his tonsils and adenoids.  That went well, though the poor fellow is not happy about it.

Finally, today is my dad's 72nd birthday.  Happy day to you! <3

O (say, can you see?)

Really grateful that a couple of friends have offered to give my wife part of their liver. Alas, neither is a match (she needs someone blood-type O and under 55). Still, in the middle of such an in-many-ways awful election season and world situation, it's heartening and hope-inspiring to know such kind and generous people exist.