A Trip Into Town, With Oxygen

We were delighted to learn that if you throw the 50 ft length of tubing over the railing, Joe can hang out downstairs, in the living room and al banco at the kitchen counter, and still use R2D2/Darth Vader (aka the oxygen concentrator or The Machine that Sucks All of the Air Out of the Room).

We left R2D2 behind today, strapped on our oxygen tanks (well, really we dragged them along) and went shopping.  For important things, like ingredients for corn bread.  This was a good dress rehearsal for our 8AM appointment tomorrow with the Bone Marrow Transplant doc.

Cruisin' in the right direction...

The Beagle has landed

Got home to Joseph St. around 7:00 last night just in time to meet the nice man with, as Joe says,  "the munitions-like tanks of oxygen and a device that, like Mitt Romney, sucks the air out of the room. Literally". This air concentrator looks like R2D2 but sounds like Darth Vader.  It was very nice to sleep in a real bed without roommates that talked, snored and watched television all night.  Joe has set up shop on the second floor, after getting upstairs last night without any significant problems.  We definitely have a few heroes to thank at the hospital.  Glad to have moved over to the ambulatory care side of this adventure.  Still a journey of discovery as we work out the logistics of temporary home oxygen supplies.

Boring/Exciting Days # 5 & 6

Beautifully boring/exciting.  Real live shower.  Real live chest x-ray (instead of bedside) for comparison to 10/24 x-ray and future x-rays.  Another walk in the park hallway planned. Tapering oxygen.

Boring/Exciting Day #4

Joe's moving in the right direction, literally.  He walked down the hall yesterday.  The oxygen level is being reduced gradually.  We're listening to Wait!  Wait! right now.  RIP Tom Magliozzi.

Boring/Exciting Day #3

Another boring/exciting day.  Joe took a few steps throughout the day and hung out in the chair.  Turkey and mashed potato dinner was OK.  The big news is that the Art Cart came around and replaced the creepy girl with our choice of Manet's "Bar at the Folies-Bergere".  We have their phone number now in case we ever have an art emergency like the creepy girl picture again.

Another Boring/Exciting Day

Joe spent much of the day in the chair instead of bed, had a hockey puck hamburger and a dry ham sandwich.  We're using the term "nose thing" instead of cannula for the device that delivers the oxygen since "cannula" reminds us too much of "cannoli".  The nose thing stayed in place all night.  Yay.  The docs aren't pushing tapering the oxygen too quickly, which is good, since we need to see the oxygen saturation levels stay high and not drop too quickly with activity.  Boring as she goes.

Bye Bye ICU!

Joe was moved from the ICU to a general pulmonary floor this morning. Still using oxygen through a cannula.  Did a little activity today.  Said the egg salad sandwich wasn't bad.  All in all, a boring/exciting day.  The painting of the little girl and her dog on the wall in front of us creeps us out. Added incentive to get outta here.  Thanks for all your support!

Houston, We Have Extubation

They removed the breathing and feeding tubes this morning at 11:30 without a problem.  Joe's been breathing on his own all along with varying levels of assistance.  He now has a cannula providing air.  When I asked the nurse how long Joe should refrain from talking, in a riff on Joseph Campbell, she said to "Follow your pain."  Great.  They'll monitor Joe for a day or two in the ICU, and then he'll move to a general medicine floor.  Three cheers for the Amazing Joe!

Cruisin' in the Right Direction

There's an indication that Joe's breathing is getting stronger and that the steroids he's being given are working on the lung infection.  Joe had a relatively peaceful, productive day breathing with less help from the breathing tube apparatus.  If the current trend continues, they may be able to remove the breathing tube as early as tomorrow.  That would be hugely wonderful.  Keep those positive rays comin'!

A Step Up to the ICU

Around 3:30 this morning, Joe woke up having extreme difficulty breathing. He couldn't maintain adequate oxygen saturation (in the 90's), even with 95% oxygen.  The decision was made to move him to the ICU and he had a temporary breathing tube and 2 blood lines inserted without problems. This is a good place for him to be.  With the breathing tube, he's able to breath effectively with lower oxygen percentages (he moved down quickly to 50% with this more effective apparatus).

FYI, I turned on comments on the blog.

Thanks for your support and positive rays!

Healthcare up close and personal. Joe's in the hospital.

Joe's in the hospital getting treatment for serious pneumonia.  Doctors advise against visitors at this time so that he can rest and get the treatment he needs.  You can send silly (or not so silly) cards to the house, which I'll happily deliver.  He was admitted Friday, Oct. 24th due to shortness of breath and other symptoms. It's been a very frustrating week of negative test results and no plausible hypothesis.  That changed a few minutes ago when a wonderful Bone Marrow Transplant resident, who has been tracking Joe's case, and her advisor came to Joe's room to propose a hypothesis based on a suppressed immune system from the 2010 transplant.  We will have confirmation in a couple of days if the results of the culture sent to Mayo Clinic come back positive. But, they're starting treatment asap to make up for lost time.  We are definitely not out of the woods; Joe will likely be here for weeks. Since Joe's fan club is so big, I'll keep you up to date through blog entries. Please send continuous positive rays for a complete and speedy recovery.  Thanks!

Gone Fishin'

Well, the docs kicked the steroids and immunosuppressants up a notch and that damped down the rash and improved Joe's energy level. There's no other evidence of GVHD from all the tests they put Joe through recently. We need to be on guard for guerrilla war tactics of Joe's little army of cells sneaking out of the bushes to fight the donor cells for territory as we go through the tapering process.

But, we'll fight this with meds, food, wine, comedy and camping. We enjoyed a truly splendid dinner with friends at a local restaurant this week. Joe's cooking up chicken with fresh ingredients he bought at the market today.

In this entry, I'd like to announce that I will NOT be running for president and Joe's Gathering Blog will be going on indefinite sabbatical. There's a lot of research to be done in the realm of medieval warfare and art history, so we'll be focusing on that, not to mention hanging out at the neighborhood pool.

Thank-you for all your support, positive thoughts, and medicinal silliness. Keep it coming. You know where to find us, both electronically and in the real world. Drop us a line anytime.

Have a great summer!
Cheers!

Not the End of the World

Joe got some more tests and we've got another appointment this week. The rash has returned :-( but it's not the end of the world http://www.youtube.com/watch?v=-hJQ18S6aag&feature=youtu.be

Our Lady of Fa-tee-gue

Oh, sorry, that's Our Lady of Fatima. But, this fatigue (or FA-TEE-GUE as my dad used to say) is for the birds. That's basically what we told the doc this week. He prescribed some "topical" steroids that are taken internally, believe it or not, since he doesn't want to increase the systemic steroids that we're trying to taper, taper, taper. If this doesn't help, we'll do some extra tests. Joe still looks good on paper, which is a good thing. Other good things include the occasional sunshine we're getting in between the clouds and rain showers and the neighbor's beautiful pink weeping cherry tree. Come on Spring! You can do it!

Keepin' On Keepin' On

Joe's still feeling a bit blah and an occasional lab value will stray from the expected, thumbing its nose at us. But, we're getting to the market and the dog park each week. We saw a nice little exhibit on mid-century modern architecture followed by lunch at the new Cuban-inspired restaurant. This week we have plans to meet friends for dinner, check out a lecture on mammoths and ... ta da ... plan our upcoming camping trips. Take that, you nasty weather!

Looks Good on Paper

Joe looks great on paper (he always does). His labs are great, his platelet count is in the normal range. He still feels a little blah, though. Not uncommon at this stage. Of course, this being tax season, I think we're all feeling a little blah. Joe looks so good on paper that we don't need to see the doc again for another two weeks. Don't even need to have blood drawn for labs in between visits. We usually go to Angelo's after those brief lab visits. We'll just have to push ourselves to go out for breakfast anyway. Happy Spring Showers!

Happy Day 127

Happy Day 127 Post Transplant. Joe continues to slowly taper the steroids, and the labs indicate that his body is making its own steroids. His checkup went well today, all the numbers relatively good, some down a bit from last week, but overall positive. Cold comfort to Mr. ImmunoSuppressed who's sleeping a lot more and has wretched cold-like symptoms. No indication of flu, so this may just be how a cold or allergies can affect a recovering transplant patient. As Pogo's friend Howland Owl says, "When I says 'OOG!' does that suggest anythin'?" A raft of tests just showed up on our clinic schedule in mid-May for the Day 180 checkup. That'll be 6 months, can you believe it? Today, the doctor said, "Almost done."

Still hangin' in there

Joe's still ahead of the curve. The new healthy donor cells are taking over and he's tapering the various drugs like steroids and immunosuppressants. He's been a little tired recently since his own steroids (I guess we all have them) are not yet picking up the slack as he tapers the steroid meds. But he still continues to cook, read, write, create, crack wise and good stuff like that. He made a great sausage quiche and terrific fried zucchini and eggplant the other night. Yum.

Happy Day 100

It's Day 100 after Joe's transplant. He's done a stellar job of keepin' it boring. Big thanks to our First Lieutenant of Care Giving, my sisters, friends and fambly. Joe was rewarded with a full day of scans and other procedures. He continues to taper the steroids. Assuming we keep "cruising in the right direction", he'll start tapering the immunosuppressants. He's doing so well that our next doc's appointment is in two weeks. That leaves more time for shoveling and getting to know our brand-new-just-in-the-nick-of-time plug-in electric snow blower. Sweet.

Happy Valentine's Day!

Things are still "cruising along in the right direction" as the doctor says. More platelets and less puffy feet. We celebrated increased platelet count along with Coney Dog's 10th anniversary by having a nice dinner at home that included a Big Steak with a Big Bone.

Happy Valentine's Day!