Friday, July 19, 2019

7/19/19

He has a new liver. Surgery was all day today. I saw him briefly in ICU and he’s got more tubes than any Borg but was warm and by report is doing as well as can be expected.

There are just not enough words to express my gratitude, thankfulness and praise.

Will maybe share more of the story if/when time permits but I’m not sure the details matter. It’s just such a miraculous and awesome thing.

Gratitude thanks and praise, now and for always.

Saturday, July 13, 2019

Three Years, One Month, Three Weeks and a Day

Weekends in the hospital are usually a holding pattern. That means we are most likely still sitting on the same decision point: heart strong enough for a transplant vs home with hospice. We can deal with either choice but it will be nice to know which. It’s not so nice to be starting our second week in the Big Medical Center Three Hours From Home but life is full of unpleasant situations.

Thought I’d write about some things for which I am grateful.

First and biggest: my sobriety. I can’t even imagine trying to do this wife/advocate thing while still being a drinking person. Either I’d be finding excuses to sneak away and get a drink or I’d be stuck in that white-knuckle “I’m so Not Drinking” state and both would be awful not just because I couldn’t be present in the right way for him but also because of the terrible shame spiral. Husband with end-stage liver disease and wife has to down a shot or four of vodka? Would make me feel not just like dog shit but really nasty ate-something-it-shouldn’t dog shit. So that’s huge. Just huge. I am grateful I got sober. Always and forever I am grateful I got sober...especially now.

I am grateful he didn’t die back in April during the first only-four-day hospital admission. Even if he dies tomorrow we will still have had two months I wasn’t sure we’d get.

I am grateful I turned out to be emotionally strong. Resilient. It’s not that I’m killing myself trying -not- to break down in tears or rage; it’s that I genuinely don’t feel the urge. Probably this has to do with my baseline personality -and- long-term sobriety. Taking away the booze takes away the really jagged fast high/low emotional peaks and valleys in favor of a more gentle wave and then it turns out I’m pretty stable on my own...and I’m grateful.

I am grateful we have a good family who can all rally around to help. We don’t have to worry about either house or the critters because the kids have those bases covered. We don’t have to worry about brother-in-law because my mother-in-law is still not just able, but happy and eager, to keep him in her apartment for as long as it takes. Having that kind of backup support is heartwarming in addition to gratifying.

I am grateful my workplace is so understanding. “Take all the time you need” has been the universal response. This is hugely helpful.

I am grateful that over the past year or so I’ve developed a spiritual practice which gives me comfort and strength.

I am grateful for a strong network of friends and acquaintances- that includes you fine blogfriends - who are there to help hold me up and listen to me.

I am grateful this hospital has enough money. Mine doesn’t and the differences are apparent everywhere from the cheerfulness of the staff to the really nice ice in the cafeteria.

Speaking of which...I am grateful for such a nice cafeteria with so many good vegetarian choices. They even stock my favorite teabags (Bigelow raspberry.) The quality and variety make this experience less lousy.

I am grateful my hairstyle- or rather lack of one - means I can sleep in a recliner, re-do my ponytail and be good to go. I’m grateful the recliner is comfy too.

I am grateful he and I keep getting more days together. He is the most interesting human I’ve ever known and we’ve had a helluva time over the past 30 years. I sure don’t want it to be over...and if it -does- have to be over I’m grateful it isn’t _today_.




Thursday, July 11, 2019

Day Something

Ugh. The attending and the whole transplant team were here just now and the news is all bad.

His bleeding stopped on its own but his liver disease is a lot worse - MELD score is up to 38 from 33 mostly due to his INR creeping up to 4. Since MELD only goes to 40 this is bad: MELD of 38 has an 80% three month mortality rate if not transplanted. (MELD of 33 was 50%.)

Plus the liver is causing pressure issues with the right heart so they are consulting heart/lung people today to find out what to do about that....they thought probable right heart catheterization soon and “this will be tricky because of the underlying liver disease” so he could die on the table from -that- even before we get to transplant. All of this is depressing and scary.  

The attending talked like we will be staying here till after the actual transplant because “you are very sick and I do not want you to leave and have something happen that will jeopardize your ability to -get- a transplant.”  Apparently his actual lab numbers are a lot worse than his clinical presentation. (On the other hand, that statement means they are thinking transplant rather than hospice.)

He and I both got the strong impression that he is leaving this hospital either with a new liver or feet-first.


Monday, July 8, 2019

3 Years 2 Months and ?? Days.

We got transferred to Big Medical Center on Friday night and everything got so much better. I hate admitting it but my own hospital’s inpatient medicine team was just...not as strong and sharp as it might have been. Plus the different in finances is apparent at every turn. So just being a sick person here is a better experience.

His bleeding slowed on its own with blood and medicine so that’s good. Still with MELD score of 34 but that is to be expected. He had a tagged red cell study yesterday which indicated the bleeding was in the distal small bowel so that was progress. But the small bowel is tough to get to.

The plan: colonoscopy and “capsule camera” tomorrow to find out what to do next. He just signed consents and swallowed a “scout capsule” which is an x-ray-visible sugar pill the same size/shape as the capsule camera to make sure the bowel is open and the real camera will pass properly. Then bowel prep tonight and an x-ray at midnight to make sure the capsule went where it should. Then tomorrow the tests. Then we use the results of those tests to
find out what to do next.

Otherwise he is still doing a little better each day. Held onto his hematocrit so no more blood, creatinine still steady and he’s _off_ fluid restrictions hooray.

The new -attending- hepatologist is nice but his fellow, who runs the show, is dweeby. Hubby is fine with him but I don’t care much for him.

So far, so good. Of course the test results could all be absolutely awful - like a tumor - but for now we are okay.

I’m remembering to eat and drink and the recliner in the room is comfy enough. My current game plan is to stay distracted (good stuff on iPhone Kindle app) since worrying ain’t gonna do a damned bit of good. Wait for more data. I’ve known all along that “and then he dies” is on the table so it’s not like I’m in denial, just taking it a step at a time. “And then he gets a new liver and a whole new life” is -also- on the table. Holding both of those side by side in my head is too hard so best to just see what the Next Thing is.

Also....it really could be just so much worse. So I’m grateful we have come this far.

Tuesday, July 2, 2019

3 Years, 1 Month, 10 Days

(Give or take a day, maybe.)

It’s been a while, sober-friends.

Gosh I just looked and it’s an even longer while than I thought: we had only just got back from the transplant meet/greet.

Well the past month has been an adventure. That same week I last wrote, we killed ourselves getting his potassium high enough to do the stress echo on that Friday and then we found out the following week that it wasn’t the right kind of stress echo and his heart rate didn’t go high enough so that has to be repeated and it was scheduled for this Friday the 5th..,

...but he got admitted again yesterday. This time for bleeding. We had been going along pretty well and doing all the things the transplant team told us to do, including weekly labs. The older two kids drive his car up from New Jersey last week so he drove -himself- to his standing Thursday lab draw. Friday the nurse called and asked that he get another set of labs on Monday — that piqued my curiosity because it meant “acute change” and probably wasn’t good. On Saturday morning the labs posted to MyChart and I saw the issue: in a week his hemoglobin had dropped from 9.3 to 8.5 and his white count had bumped a bit. So fine, watch and wait. He had complained of diarrhea and how that was causing increasing blood in his stool but he still thought it was all from his hemorrhoids and no big deal. Plus on Friday the dentist who was clearing him for transplant did a “deep cleaning” which made him bleed like crazy.

But Saturday he got worse and Sunday he was -super- exhausted and said he had more bloody stool so I called the transplant team and they agreed he should go to the ER yesterday which he did...

...and now he’s admitted to my hospital with a hemoglobin of 6.1 which only bumped to 6.4 after two units of blood. Dropping from 8.5 to 6.1 in 4 days is pretty impressive but he’s been here almost 24 hours and they still haven’t figured out what is bleeding or how to stop it. Frustrating. I’m guessing that whatever is causing the “CEA 14.6” thing I mentioned last post is what’s bleeding but it just seems so long to be getting it sorted out. I’m assuming he’s got colon cancer and braced for it to be worse than just superficial malignant transformation of a polyp. That would be the best, of course, and if there were big ugly matted lymph nodes those would have showed up on the CT scan and/or MRI he got in April but it still could be anything in between the two. I’m assuming he’s gonna have to have a colon surgery and hoping like hell my guys don’t mess up anything and can pull him through, bleeding risk and all.

But we aren’t even there yet; we are still just pumping him full of blood and fluids. And after getting special dispensation to stay over (visiting hours are 9a - 9p) I’m exhausted. Had a quick trip home for shower/change but now I’m back and waiting for the docs to round so I can find out what the plan for the day will be. He’s finally sleeping so I’d love to duck over to my office for a while but then I will miss the plan. Healthcare is frustrating.

-later-

Turns out he -does- have C Diff. Also all his numbers are getting worse not better. Plan today is new IV and if not then central line. CT scan of belly. Plasma and vitamin K to lower INR. If things keep getting worse then transfer to Rochester. This is all scary and awful.  And yeah, chance of death is very high.

I have never been stretched as thin as I am right now. Fortunately I was smart enough to get off the emotional rollercoaster drinking causes -before- all this went down and I am so glad. I just don’t know how I would have managed any of this if I had still been drinking.  At least now I can focus on “what’s the next thing I have to do?” and “how can I -not- have an emotional breakdown?”

In sobriety I developed a deeply personal but meaningful spiritual practice so that helps but hardly enough.


Thursday, June 6, 2019

3 years + 15 days (also D-Day)

Oh soberverse, things are not great in SamLand.

We have returned from the two-day meet-n-greet at the transplant center. It was daunting.

First was the drive to Big City: two hours forty five minutes which mean some people say it's two-and-a-half hours and some say it's three....I say three.  Easy-peasy driving and the Big City doesn't have bad traffic but still that having-to-drive thing makes it momentous and heavy right from the start. We checked into the Nice Downtown Hotel and discovered their room service to be quite suboptimal...I know, totally the most minor of minor problems but Spouse - whose mother was in the international airline industry for an entire career including the sparkling yuppie Eighties - has a big fondness for room service. Also we had shown up too early in the afternoon and were both bored stiff but too tired and nervous to seek out entertainment so not an auspicious start.

First day was very long. He got a ton of blood drawn and then we had a PowerPoint presentation and met with various people in an exam room all morning. While at lunch they called because his potassium was too low to do the dobutamine stress echo which was scheduled for early afternoon so we stopped at the pharmacy instead of the heart center. We rescheduled the stress test here at home  for this Friday as in tomorrow.  He also has to get a colonoscopy (as part of "routine health maintenance - women have to get mammogram and Pap smear too) and to get dental clearance. We have a dentist very close by and she usually has excellent availability so that one should be easy. Appointment with his new gatekeeper/coordinator primary care doc is the 18th — two weeks from today. She can coordinate local care as our local GI doc isn’t available till first week of August.

It was a -lot- to take in...and I discovered that I seem to have Big Emotional Issues about being on the patient side of healthcare and about being in Big Medical Center. Got really increasingly stressed/anxious/angry and it all started resolving literally -as- we left the parking garage. There’s no doubt enough stuff there to unpack for days as I feel like some of my mother’s big issues with “sick” are mixed in along with med school stuff as I felt totally judged and like everyone thought I was crazy or awful or both.  Yes, I am totally serious. I agree it’s totally out of character but there you go. 

Spouse seems to be doing well with all of this - possibly better than I am. He agrees it is pretty daunting but do-able. After being put On The List (for transplant) one gets weekly labs and has to be ready to go at a moment’s notice. It’s the aftercare which gets hard—10-14 days inpatient then a visit three days later and then in 7-10 days and monthly visits for the first year. Lot of driving. Lot. Of. Driving. 

And although by all right I should love Big City--okay, fine, it's Rochester NY -- I just don’t. Back when I worked there every so often I’d meet someone who clearly didn’t like Philly but when pressed had no specific or even tangible reason at all — now I know what they meant. I think Rochester has lovely architecture with many - heck , most - houses -totally- my jam...and yet everything just feels weird and wrong in ways it seems crazy to even try to articulate. Odd. But I’ll learn to live with it.

We were too overwhelmed by the day’s events to seek out anything other than candy and horizontal :-).By the way...Hershey's Crunchers -- come in a bag?  -- deadly-good.

Second day.  Just meet with the actual physicians then leave from the hospital. Easier. Labs back.
MELD score of 34 which kind of expected. That's the number they use to quantify/stratify how likely you are to die of liver failure and how soon. In state of NY you don't really qualify for transplant till you hit 30 but the scale only goes to 40 so there's not a huge lot of wiggle-room. I had known his MELD was 34 when he was hospitalized but had naively hoped it would/had improved since out. Apparently not. So that was shocking enough to me.

BUT

His CEA value was 14.6 when normal is 3 or less.

Cirrhosis does raise CEA but not above ten. CEA above 10 is colon cancer till proven otherwise. Always. I am hoping it is early-stage: a polyp that just turned superficially malignant. Spouse himself is fairly confident that’s the case as “no cancer of any kind anywhere in my family” and also "the CT and the MRI didn't show anything" but 1) If you didn't do a bowel prep the CT and MRI would -not- show anything; they don't read for specific findings there as only the biggest things will show, 2) his father was adopted so all bets off there and 3) being in the specialty I’m in I can scare myself but good with “and that one patient...” stories. I know early-stage no-nodes cancer where surgery is curative is totally not a contraindication once fixed but the surgery is still no cakewalk and might have to be at Big Medical Center depending on how our anesthesiologists feel about doing him. I know at least one of our surgeons would be willing and she's slow but good so I'd be fine with that but I'm not sure our anesthesiologists will want to have that much scary-to-manage-sick-patient. The colonoscopy is going to have to be done in the OR vs the GI suite because of his underlying liver disease so I guess we will get a trial run/sense of things then.

I’m holding onto the mental video of the two post-transplant volunteers we met who looked and acted -great-.  If he can get through the surgery it’s a whole new life but that is definitely an if not a when.

Also I have been stunned by how hard I'm taking being SO tied to the healthcare system. Rochester wants to see us back in a month regardless of what happens but even in best-case scenario once you are On The List you have to get weekly labs and stay the hell put wherever "home" is because they could call you any time day or night and say "this is it; we have a liver." That's intense. So basically we are arranging things so that he takes a week to go down and tie up all the NJ things he needs to tie up (and get his dog another visit with the vet we all love down there) then he will be up here till further notice.

So that's how I am. There's just SO much to  I've been treating all of these pieces of data like clothing in a whole brand-new closet which is very overwhelming and stuffy and some of the garments are really oppressively heavy when I have to put them on and wear them so I try to make sure to leave as much clothing on the hangers when I can.  Like now, sharing with all you fine people. I'm taking care of myself as best I can and have a support system of friends and all....but this is still Really Hard.  And it's gonna keep being Really Hard for the foreseeable future.



Monday, June 3, 2019

Three Years and Thirteen Days

We are in the Nice Hotel in the Big City because all day tomorrow and half of Wednesday will be taken up by classes and meetings to get started down the liver transplant path. We have a suite and it’s a very nice room with dual zone climate control (key) but the in-hotel food choices aren’t great and historic part of Big City doesn’t offer much in the way of little shops or cafes. I found one that might do for tomorrow though which is enough. It’s a curious mix of anxiety and boredom.

Which, I suppose, beats the resentment and annoyance I’ve had going since Memorial Day weekend. I’m getting all the things done which need to be done and I’m being decent to everyone but it is really wearing thin. Eldest is still fairly high maintenance dramatic and MiL is playing emotional games in spite of knee surgery and the youngest dog had an escape on Saturday and nearly got clobbered by a car and got carried back up the hill because I took off after him without a leash and...

...I’m tired of all of it. Just ridiculously emotionally fed up. It’s not fair, hasn’t been fair, will never be fair...and that’s just the way it is. Not to worry — im still finding small joys here and there — but overall I’m just not real thrilled with life right now. There’s definitely room for improvement. Sure it could be -hugely- worse and I’m grateful it isn’t...but still.

Plus we really have no idea what to expect tomorrow and it’s a source of worry and anxiety.

Back to trying to distract myself.