Settling in at Home

It is all still kind of surreal, but we are home at last and beginning to settle back into a new routine.  Shirley's niece Souang and boyfriend Nic who stepped in to keep the house running during our long absence are going to continue to stay with us for the foreseeable future so that we have an extended support network.

The pets were very happy to see us.  Max, our oldest dog seems to be showing his age much more.  He is mostly deaf now and has a hard time getting up off the hardwood floors.  Molly, the little chihuahua mix seems to have trimmed down.  Grace, the baby cat is now almost as big as the older Yori.  The first night back they began sleeping curled up together in a bed beside the dogs, but by morning, Yori was back in his traditional spot-cradled in under Shirley's arm.

My folks printed up a big banner welcoming us home.  As we turned up the driveway Monday night, it was the first thing we saw.

Shirley will have a busy week with appointments with both her local doctors and personal care needs. Fingernails were done Tuesday and hair will be attended to today.  She will be seeing her local Pulmonologist and Primary Care Physician, as well as setting up physical therapy later this week.  I guess the focus on the nails and hair first can be racked up to having seen far too many doctors over the last six weeks with limited attention to personal grooming.  :)

We had a little scare last night, when her temperature spiked.  Good thing we are monitoring basic vital signs twice daily so we noticed it.  We called UW and spoke to the Transplant Fellow on call. We feared she would tell us to head to a local ER, but given that there were no other symptoms of concern, she told us to continue monitoring and report back if the fever persisted in the morning.  By 5:30 am, it was back down to 98.4, so we dodged a bullet.

Homeward Bound

Today Shirley had her second follow-up visit with the transplant team since her release from the hospital.  Last week, it would be fair to say that her doctors were reluctant to endorse her intent on returning home this week, but one week later and the progress was significant enough that we were given their blessings for a safe trip home.

We spent the majority of the day at UW: blood tests, pulmonary function tests, chest x-rays, meetings with the transplant team, filling prescriptions at the pharmacy, getting copies of medical records to take to her local pulmonologist, and getting a prescription for physical therapy to be filled in Portland.

Then a quick trip back to Pete & Caroline's to see how much of our six months of accumulation we could shoehorn into the car.  Packed to the rafters, we headed home around 6pm.  The traffic gods smiled upon us and even with stops for food, fuel and bladder relief, we were home shortly after 9:30 pm.

We were greeted by a large "welcome home" banner across the front of the garage; a spic and span house (thank you Souang and Nic) and some very happy dogs and cats. It's a little overwhelming in terms of where to start.  The spare upstairs bedroom and now stacked with all the bags and totes brought back from Seattle; and the wet bar has stacks and stack of mail.  It's going to take a few days to get unburied and organized, but I can't tell you how great it is to be home.

Planning our trip Home

The signs may be small, but every day, progress is being made on Shirley's recovery.  She has not had to put on her knee braces the last two days to climb the stairs into Pete & Caroline's house.  She took a shower and didn't need to rest on the shower seat.  She took a more active role in making dinner last night than the night before.  There is still a long way to go, but the progress is very encouraging.

And with the improvements, we have scheduled a return trip to Portland. We have a meeting we are supposed to attend for a being host family for our exchange student (who returns next Sunday!) on Tuesday evening and we've decided this is as good as any reason to come back for at least a few days.  We are planning driving back next Monday night for what will be Shirley's first visit since February 13.

Our plan will be to stay in Portland until the following Monday, when we'll need to return to Seattle for another clinic follow-up visit. (Don't worry, Souang & Nic are still house sitting and will be there for Joy our exchange student).  I have the annual Portland to Coast Relay walk on Friday-Saturday and depending on how Shirley is feeling, she may either come over to the coast to join me there, or stay at the house.

It remains to be seen if this will be a permanent return home or if we'll have many more nights to stay in Seattle.  But it's a great start.  We are really looking forward to sleeping in our own bed, seeing the house, pets, and all our family and friends in Portland.

Shirley went in yesterday for a scheduled MRI on her back to see if the cause of her pain could be identified.  We haven't heard the official word yet, but was went in with her sister Betsy (a semi-retired Radiologist) and they came home with a DVD of the images.  They identified compression fractures on three of her vertebrae, which correspond to her pain points.  We'll wait for the official ruling and a determination of what they are going to suggest doing about them when she sees the doctors on Monday.

Happy Anniversary

It suddenly dawned on me that it was the 14th.  Six months ago today, Shirley got her new lungs.  What a wild six months it has been.  And it's been six months and a day since Shirley has been home--but we plan to remedy that next week.  :)

Today, Shirley's sister Betsy came for a visit. She's in the states for a few weeks visiting from her home in France.  This is her second visit since the transplant, but this time Shirley is up and able to move around and visit.

We continue to do retail therapy daily.  Today it was just the grocery store, but yesterday it was an hour-plus at Costco, then another hour clothes shopping at Kohl's.

Each day she gets a little stronger.  Today she did the steps into Pete & Caroline's house without having to put her knee braces on for additional support.

Tomorrow, Shirley has invited some friends over and is going to be the cook--something she loves, but hasn't been able to do for quite some time.

Retail Therapy

I've heard the term "retail therapy" used in a joking way before, be we've merged the need for Shirley to be up and walking, the fact that stores have nice large flat spaces and the fact that she frankly needs to buy some stuff to give the term new meaning.  For some reason, the clothing Shirley chose to bring with her for a February transplant just aren't quite appropriate for August--even with Seattle's mind climate.

Friday, after the day spent walking between hospital appointments and then six hours in the ER, didn't have too much time for other walking, but we did spend an hour browsing a local Bartel's store.  Yesterday, we made a morning excursion with a couple of stops plus a nice drive along Lake Washington; and then an evening outing with a stop at one of Shirley's favorite clothing stores.

Today, we are going to tackle Costco and then hopefully go for a walk in a nice flat park somewhere.

Stairs and inclines continue to pose a challenge, but I can tell she's getting stronger every day.

Familiar Surroundings

Day two of "freedom" was spent in a very familiar place -- the Hospital.  Shirley was scheduled to go in for some blood draws.  Both her Tacrolimus (an anti rejection drug) and Coumadin (for the blood clot in her neck) need to be checked regularly to adjust the dosage.

We went to the lab but Shirley's back was really bothering her.  While waiting to speak to a pharmacist in the Anti-coagulation Clinic, Shirley called the Post Transplant Coordinator to discuss her back pain.  The Coordinator advised her to go to the ER to have it checked.

At the ER, they did some X-rays and gave her some IV pain medications.  They suggested that the best way to manage her pain was to re-admit her to the hospital, but that was not an option far as Shirley was concerned. Shirley chose to accept more pain and continue her rehabilitation as an outpatient.

They are going to schedule an MRI for her early next week to try to zero in on the cause of the pain.  In the mean time, she will continue to build her strength and hopefully stronger muscles will help overcome some of the pain.

First day home

Wow.  More than 24 hours has passed since I brought Shirley home.  It is going to be quite an adjustment for all of us, as we now are back into the mode of being responsible for taking medications, tracking vital signs and all the normal things people do at home.

We had a nice dinner with Pete, Caroline and Francis on their front porch last night.  Tonight, Shirley was really craving Halibut and Chips, so we went to an old seafood joint on Alki Beach.  Shirley and I then did a little shopping.  Walking around a Target store is great exercise for her:  Retail Therapy = Physical Therapy.

Tomorrow, we go back to the hospital for a blood draw for them to check Shirley's levels for both one of her anti-rejection and anti-coagulation drugs. These will be done weekly for awhile until her new normal routine for exercise and eating stabilizes.

Discharge Day

Shirley has graduated from the need for in-patient rehabilitation.  Today they will discharge her.  It has been 174 days since her transplant and all but 14 of those days have been in a hospital.  Hopefully, this will be the last of the long stays, but we have been told that for transplant patients, they will often check you in for short term observation for things considered minor for non-immuno-suppressed people.

All that aside, today we go "home" to Pete and Caroline's for the next stage of our journey.

Before we can leave, we have to meet with the Pharmacist to review medications and see what has changed since the previous discharge.  We also have a Respiratory Therapist coming up to assess Shirley's need for supplemental oxygen. After 5+ years on O2, Shirley acknowledges it could just be a crutch, but although she has basically not used it for the last 72 hours, she is uncomfortable at least not having some oxygen available if she feels short of breath.

We'll also be meeting with scheduling clerks to book more outpatient Physical Therapy visits; Transplant Clinic appointments, etc.  She may not be spending the night here any longer, but we'll still be coming up 2-3 times per week for a few weeks before they will let us head back to Oregon.

Day Pass

It was scheduled to be a beautiful, sunny Sunday afternoon.  Seafair was in full swing and Pete & Caroline were hosting family & friends that their house with a view of the boats, hydroplanes and airshow.  It seemed like a good reason to request a pass to get Shirley out of the hospital for the afternoon and into the real world.

But before she could visit her brother's house, we had to get clearance that she could negotiate the steps into the house.  We got the clearance after lunch and packed up for the adventure.  Since the car was parked nearly a quarter mile away, we used a wheel chair to get her to the car, but just took a walker for our journey.

Shirley did great getting up the stairs and held court on Pete & Caroline's front porch.  From there, we had a fantastic view of Lake Washington and all the festivities. There were hundreds and hundreds of boats on the lake.  Many tied together forming giant rafts the lined the perimeter of the hydroplane course.  The race was further south on the lake, but the northern most turn of the course was within our view and we could see the rooster tails of the boats as they flew around the buoy and headed back south.

We were also treated to multiple flybys of some vintage WWII bombers and fighters and acrobatic performances by stunt planes.

It was great to see Shirley in surroundings other than the hospital and really whet her appetite for a final departure from UWMC.  With a little luck and some more work in the gym, that will happen this coming week.

Photo updates

There has been a request for some new photos of Shirley, so this edition is a photo-rich update.

I took several pictures the other day during her physical therapy session, so here we go.

Here is Shirley getting ready to go down to the gym for a round of PT.  When she wants to sit up for extended periods, she's using a wheel chair currently.  It is also helpful for longer transports.

Check out those skinny legs!  Here is Shirley working on her balance and leg strength with her PT Margaret. Shirley is up to walking a couple hundred feet at a time.  She is using a walker to balance herself.  Yesterday, she was cleared to walk with me as her only supervision, meaning the therapy staff are comfortable that she has enough understanding of her limits and knows when to stop.  Her walker has a seat, so she can turn around and grab a seat if she needs to take a break.

One of the criteria that Shirley has to pass before her release is proving that she can climb the nine steps she'll need to access Pete & Caroline's house (our temporary home here in Seattle).  Step one of stair climb training is done on the parallel bars.  Different height blocks are used to slowly increase the height that she is lifting herself.  This photo is with the 6" block, which is just shy of a normal 7" stair height.  

You'll note that Shirley has a yellow gown on.  This is because in the course of a route weekly swabing, they detected MRSA, which is a Staph that can be very hard to control in hospital settings.  She isn't experiencing any ill affects, but has been labeled as a carrier.  She'll need to be gowned up when she leaves her room until they have three consecutive weekly negative swabs.  

After successfully completing the block steps on the parallel bars, Shirley moves on to the 4-step flight that is used to simulate a normal staircase.  She made it to the top of the stairs and here she is on the way back down.  Later in the day, on this same device, her legs buckled on her and she jarred her back as the therapist grabbed her as she fell.  This aggravated the same back injury that has hampered her rehab throughout this stay.

Time to relax after a hard day of therapy.  It's nice to have enough tubes out that I can actually sit next to her in bed without worrying about pulling something important out.  :)