Having cancer

Everything else
689

A little status on Ms. Wisdom:

Her lung has been slow in re-inflating, despite the chest-tube being on its “suck” setting for a few days now. The doctors are getting impatient with her progress, and yesterday (Xmas) they said that if there is no improvement by Monday morning, they’d probably set up the surgery. They point to her Xmas-morning x-ray, which showed a little growth in the size of the gap between her lung and the chest wall; meaning she’s gotten worse, not better.

Surgery - in this case - would involve poking a few holes in the chest between the ribs and operating using waldos to find and seal the hole in her lungs. The secondary objective would be to tie the spot of the hole to the chest wall using one of several different methods. This isn’t a great option as it introduces scar tissue into the chest cavity and even the lungs, which can cause reduced breath capacity and possibly even chronic pain.

Oh, and they shared with us that when they admitted her, their big fear was that the cancer had spread to her lungs and that was what was causing the collapse. A CAT-scan the other day convinced them that this was not the case.

Ms. Wisdom is a bit of an odd case since this is typically a surgery only used on the elderly. My wife - after freaking out a bit - is actually sort of bullish on the surgery: after being in the hospital for over a week, she just wants to so something that will get her home. The recovery time for the surgery is apparently two to four days.

I’m a little less anxious to go the surgical route. In particular, I think that the chest tube has not been doing its job, resulting in the doctors having bad data. Each time I’ve checked the tube it’s either kinked or twisted in some way to prevent the suction from working. If I’m right, then it’s very possible that for the last few days the tube hasn’t been able to work its magic more than half the time.

Unfortunately, I wasn’t able to speak to the doctors directly (I missed them and they’re like meercats when it comes to speaking to family), but I did manage to corner a nurse and explain my concerns.

Now I know nothing about medical stuff, but by golly I am a trained and certified engineer (well, that certification probably expired a while back, but still…) and jury-rigging up hydrostatic and pneumostatic structures is well within my wheelhouse. So between me and nurse, we rigged up some braces and supports for the tubing using medical crap (arm-boards, tongue depressors and LOTS of sterile medical tape) that should prevent any kinking. I also worked out a system using more tape and “sharpie” markers that should tell us if there is any torsion in the system. I’m contributing, goddamnit.

My hope is that this crappy-looking Rube Goldberg contraption will ensure a constant vacuum through Monday so that the doctors will have the proper data to make a surgical decision.

690

Now I know nothing about medical stuff, but by golly I am a trained and certified engineer (well, that certification probably expired a while back, but still…) and jury-rigging up hydrostatic and pneumostatic structures is well within my wheelhouse. So between me and nurse, we rigged up some braces and supports for the tubing using medical crap (arm-boards, tongue depressors and LOTS of sterile medical tape) that should prevent any kinking. I also worked out a system using more tape and “sharpie” markers that should tell us if there is any torsion in the system. I’m contributing, goddamnit.

That’s pretty awesome.

691

This is why I love engineers. My father-in-law and both brothers-in-law are engineers and they see a problem and by God they attack it, with spit and duct tape if necessary. Here’s wishing a healthy New Year to your wife and entire family, Tin.

692

Tin Wisdom - It is possible the tube has not been free to do its job, but sheesh, the medical staff should have been on top of that. I’m a little disappointed the doctors told you “2 or 3 days and out”. That was unrealistic for your wife’s situation. I still can’t get over they forgot to suture the tube in place. That is maddening because that in itself could have created a bigger hole than the tube is occupying if she was moved a lot.

I pray things come along better. Also, grab a pulse oximeter for home. Your wife will need it to help differentiate between oxygen/lung problems, and general post-pneumothorax pain, tightness.

693

I have (just now) ordered the one you recommended upthread, thanks for the recommendation!

694

I have thought about you guys off and on all of this holiday. Good luck with the surgery should you end up going that route.

695

Well, the (far) better half of the Wisdoms is now back at home. After a total of twelve days in the hospital.

My junkyard engineering to keep the hose un-kinked and un-twisted seems to have borne fruit. Over the weekend her lung had expanded to fill all but a tiny sliver of the chest cavity, and the area that it hadn’t filled was the same place that the tube is sitting, so that obstruction was probably the sole reason for the space.

To be clear here: I’m fairly certain that if I had not rigged up this silly thing, they would have elected to do surgery on my wife. I’m not too happy with this knowledge.

The doctor reduced the suction to the minimal amount Monday morning, and the afternoon x-ray did not show any enlargement of the space outside her lungs (the technical term is “pneumothorax”). The nurses stripped down my tape and boards from the tubing and verified that it was kink-free, then they re-applied the structure to prevent any other kinking.

Nonetheless, it appeared Monday afternoon that a blockage had appeared in the tube somewhere, probably inside the tubing in her chest. This was annoying, but not all that terrible since the doctor had ordered that the suction be turned off anyway and a simple “water seal” be used to achieve neutral pressure in the tube. If the blockage had happened earlier in the process, they would have had to remove the tube and insert a new (fourth!) tube.

Tuesday morning, the x-ray showed no change (meaning no enlargement of the tiny pneumothorax), so the doctor finally (somewhat reluctantly) agreed to release her yesterday afternoon, contingent on a noontime x-ray showing no regression. Which it did not.

Overall, I am not too pleased with the care Ms. Wisdom received at what is allegedly one of the top hospitals in the nation. Not only did she get three (3!) chest tubes inserted when a single one should have done, and not only did the doctors (and to a lesser extent the nurses) consistently misdiagnosed an equipment issue as a medical issue, and not only were they on the cusp of performing surgery based on faulty (but easily obtainable) data, but I’m fairly convinced that my wife’s condition was a fairly straightforward pneumothorax that should have been treated and fixed within a couple of days if not for all their bungling.

Additionally, the first few days in the hospital were just a morass of confusion and ignorance for us. It wasn’t until I hunted down the hospital’s “patient advocate” and threatened to lodge a formal complaint that I even learned the name of the doctor who was in charge of my wife’s care. It’s not that he didn’t exist before that or anything, but no one told us that little tidbit until I demanded it. Yeah. Displeased.

696

That doesn’t seem like an unreasonable assessment. Good thing you were there for her.

I’m glad you reported back. It’s been interesting to follow and I’ll confess to thinking that you just needed something to do to calm yourself with building your apparatus. It turns out to be the thing that turned the tide. Good for you! Mrs Tin and the little can Wisdoms are all lucky folks.

697

Yay, home!

Boo, hospital incompetence. That stuff is incredibly infuriating; being in the hospital itself is godawful, on top of whatever has you there in the first place, and anything that adds to that is just the worst. I think I’ve shared my stories of nurses and doctors straight-up not listening to my during my last stay and how it compounded my misery…so obnoxious.

Anyway, glad that chapter is over for you guys, and here’s hoping for a speedy recovery for Mrs. Wisdom!

698

Ugh. I know there is some gray area in medical treatment, but they should at least have down what it seems are basics. When my wife went in and the surgical oncologist said it was probably a melanoma on her head at worst, we anxiously awaited results. We finally called and the results had been in for days, but had to get the news from her medical oncologist who we had not seen yet. It didn’t change the news in any way, but it certainly made it seem like the surgeon was way off base and simply found himself too busy to call with bad news a couple that were waiting on pins and needles.

Glad she is home and maybe this will be the worst of the challenges your family faces. Hope you are holding up OK, as well.

699

Tin Wisdom -

Glad your wife is now home.

Sorry to hear about all the misery with chest tubes. Curious about whether a pulmonologist was involved with the chest tube management or was the surgeon calling the shots?

700

It gets pretty confusing pretty quickly.

The initial chest-tube was installed by the ER doctor/surgeon on duty the day she was first admitted. That one later popped out (the next day) because it was not sutured in place properly.

The second tube was installed by a surgeon. That one was removed after two days… too early as it turns out.

The third was installed by the same surgeon again, and that one lasted for the remaining nine days.

The pulmonologist was kind of her main doctor in that none of the other doctors did anything without consulting him first, but officially the doctor in charge of her case was whatever “hospitalist” doctor that was on duty during her stay. They rotate these hospitalists so that one is always on duty for four days in a row. Since we were there for twelve days, I guess we swapped between two of them a couple times each.

701

My Uncle died this morning of Lung Cancer. he has been in a hospice for 10 days. The last 4 or 5 days have been really hard. He has been drugged to the nines mostly and as soon as the drugs wore off he was in a constant state of agitation. The care he got was amazing and you couldn’t ask for anything more.

It really was a blessing he went as he was in such a bad way, amazingly he had had a pacemaker fitted years ago and was no longer on his heart medication yet just kept on going.

702

Well, I’m disappointed about how fractured your wife’s care was. Not a good system. Thankfully you are such a wonderful advocate for her.

703

I think I can pretty safely say that Tin wins the Qt3 2015 spouse of the year award.

704

Yes.

We had our son at what is considered one of the finest children’s hospitals in the nation. We now believe deficient care there exacerbated his many issues.

There are hospitals that are good. There are hospitals that are good at public relations. They’re not necessarily the same.

705

Sorry for your loss Reemul. Good to hear the last days, while hard, were at least soothed a bit by the good care…

706

Sorry for your loss, Reemul. :(

707

Can this double as the bitching-about-the-medical-industrial-complex thread? Great.

I am fucking incensed right now.

  1. Switch over to wife’s insurance as I’m an independent contractor and have no employer-sponsored health coverage.
  2. Get on this plan in which your first three specialist visits (per person) are covered, intending to get a couple of those done and then switch to an HSA plan with a $3k out-of-pocket max for 2016 that we will 100% for sure hit.
  3. Get three specialist visits done in December 2015 since we’re told that the plan switches over at the calendar year.
  4. Get bills for many monies for those visits. What the fuck?
  5. Call insurance. Guess what? The coverage switched over on December 1. The deductible is calendar-year. So we had a full deductible with shit coverage (well, no pre-deductible coverage) for one fucking month in which we got these visits done because we were told over and over – we fucking double-checked with my wife’s HR rep three fucking times – that they were free.
  6. The fuck do I do now? Lose a bunch of money, I guess.

I am so fucking angry.

708

I just typed a response but erased it because I’m helpless to help. All I can say is fuck this shitty system. You did everything right.