Update #6-We're Home!

November was a transition month.  We moved from weekly appointments with the heart clinic to every other week.  Of course I still had weekly labs and other doctors to see.  The Wednesday after Halloween, my friend Robin met us in Tracy so we could pick up Nolan to give him some one-on-one time with mom for a few days like Leah had in October. Nolan and I enjoyed some fun mom-son time while Dad worked.  I was lucky enough to get my final check out appointment with Neurology moved from Dec. 22nd to November 3, and Nolan accompanied us to the appointment.  This was another imperative meeting as it resulted in the removal of another medication from my plethora of drugs.  Scott and Nolan left for home the first weekend in November and my friend Heather came down to be my weekend caregiver.  By this point, the caregiver duties had diminished, but my friend still took great care of me and pampered me all weekend!

Nolan explaining his homework to Mom

Playing with the selfie-stick

I also experienced my first extended period of being left alone!  Scott had a 4-hour training in Redwood Shores.  He left in the morning after helping me with my insulin shots. I’d been attempting my insulin shots on my own the day before, so I could give myself my insulin shot before lunch, but my hands are shakier in the morning. I felt completely comfortable being alone for a few hours, and there was a certain sense of freedom having some time alone after months of somebody always being present.

On November 10^th,, I had another full “spa” day at Stanford with the biopsy scheduled for 3pm. We arrived early and they squeezed me in for a 1:30 biopsy.  I was very excited that we’d be done and out of the hospital by 2:30!  But once again, my plans were not my own.  The biopsy went smoothly however the site in my neck where the bioptome is inserted didn’t want to stop bleeding. 

Typically, after a 10-minute hold on my neck and a band aid, I’m good to go.  This time, my site needed to be held for 40 minutes.  Everything looked good and one of the nurses, Veronica,  began to escort me back to the waiting room.  But before we even left the hallway to the procedure rooms, she looked at my neck, turned me around and we went back to the biopsy/cath lab.  Another nurse-Ben-held pressure for another 40 minutes and we called Scott to let him know what was up.  The doctor who performed the biopsy even came back to check it out.  Their best guess was that a small capillary had been nicked during the procedure.

So after approximately 1 ½ hours after the cath was completed, the bleeding seemed to have stopped and I was escorted back to Scott in the waiting room.  As with all biopsies, were told to hang around the hospital for 30 minutes before we leave, which typically isn’t a problem as I’m required to get a chest x-ray after each biopsy.  Veronica also told me that if it started bleeding again after we left the hospital to just come back to cath lab before 8pm, and to not go to the  ER.  (Not good places for an immunocompromised person to be hanging out in).  However, if it was after 8pm I’d need to go to the ER.

Scott and I headed down the long hallway toward Radiology for my chest x-ray.  I told him I needed a bathroom break first and stopped at the restroom nearest Radiology.  Upon washing my hands, I looked in the mirror and saw that my neck was bleeding again beneath the Super Duper blocking bandage Ben had acquired and applied.  I came out of the bathroom and told Scott we needed to head back to the cath lab. 

Once we reached the waiting area, Ben came out and brought us back to a room that is called “The Cath Lounge”, where transplant patients can wait for their procedure without wearing a mask.  He then proceeded to hold pressure for less than 10 minutes and then when he was satisfied the bleeding had stopped, he spread this glue-like substance on my neck, put steri-strips over the site, and a band aid.   He then asked us to wait in the room for another 20 minutes and if everything looked good, we were set to go.  We headed to Radiology 20 minutes later.  My lucky “early” biopsy turned into one of the longest to date, and we didn’t leave Palo Alto until after 4:30! 

Thank the Lord it was still zero rejection, so there was still the positive outcome.  We celebrated this victory and my 3 months post-heart transplant anniversary with a lovely dinner at the condo.  I even enjoyed a glass of one of my favorite wines from Trader Joes!

Everything was still on schedule for us to leave on November 28^th to go home.  I had my final appointment with the infectious disease team on November 14^th (I joined that “team” due to the Listeria).  On Thursday, the 17^th, Scott headed back to Rescue so he could take the kids to a musical I’d purchased tickets for before getting the call, and to get things ready before I came home.  My Aunt Joanne arrived as my final caregiver in Foster City after some unfortunate flat tire trouble.  During her visit, I ventured out and about a bit more.  We went shopping, took a drive to Coyote Point and walked the Marina, and ate lunch out.   By this time, my caregiver only needed to give me my morning insulin shots, as I’d finally taken over that duty myself for the other 3x a day I required the injections.  But I was spoiled with my aunt making dinners each night and doing the laundry and housekeeping.

My personal trainer whipping me in shape!

On Sunday, I anxiously anticipated the arrival of my family.  Scott and the kids would be driving from Rescue to Foster City and we’d all be together for the week of Thanksgiving.  My how Leah and Nolan had grown since their last visits!  We had my aunt take a few family photos before she headed back to Sacramento Sunday afternoon.

All together again!

I had labs and a final clinic visit on Monday morning, and the whole family went.  I was pleased that the doctor in clinic that day was Dr. Hunt.  She was around during my first transplant, and she is also the one my sister spoke with trying to get me seen at Stanford last November. According to many of the other cardiologists and cardiology fellows I’d seen in clinic, Dr. Hunt was my #1 advocate to have me re-listed for a second heart.  I really wanted her to be able to meet the kids! 

After clinic and pharmacy pick up, we went to the Cantor Arts Center on the Stanford campus, where their collection of Rodin bronzes is one of the largest in the world.  The museum was free and originally I’d only intended to tour the portions that most appealed to Leah, not sure if I could walk the whole museum.  Well, as it turned out the way it was laid out for the exhibits Leah wanted to see, we walked the whole museum.  I don’t know how large it really is, but it’s probably pretty close to the size of the Crocker Art Museum in Sacramento.  Then if you add in the Rodin Gardens, perhaps larger.  I went up steps and down steps, and walked quite a bit.  Nolan and I did sit down on some of the large ottomans in a few of the galleries and take breaks but we ended up being there for more than 2 hours!  Afterwards, we took the kids to lunch and headed back to the condo.  I slept really well that night, only woke up for bathroom breaks twice.

On Tuesday we drove to the coast.  We went to tour the Pescadero Light House and grabbed some delicious bread and pumpkin pie at Arcangelli’s bakery in Pescadero for our Thanksgiving dinner.  It was too chilly for the kids to run and chase waves that day, but we planned on eating lunch in Half Moon Bay. We drove up the coast and had a delicious lunch and then went on search of the local candy store.  We found it, but it was closed!  They did however have a giant gumball machine outside that was like watching a ping pong game.  The kids both ended up with 2 gumballs, which were hard as rocks and turned their mouths blue…but they didn’t care.  Well, Leah did, but she ate them anyway.

On Wednesday, I had my 3-month teaching at clinic.  I thought I’d be able to knock that out when were at Stanford on Monday, but they were too busy.   After clinic, we treated the kids to a movie.  It was challenging finding the theater once we parked in the parking garage and we ended up walking around the whole block looking for the entrance, only to find out if we crossed the parking garage, we’d have been right there!  Oh well.  I’m supposed to get exercise. 

We spent a quiet Thanksgiving at the condo.  I had been preparing dinners since Sunday evening and it was delightful to finally be able to cook for my family again. Though I still need help getting the hot dishes from the oven as they are often too heavy for me to take out.  I hadn’t been able to prepare meals for many months’ pre-transplant.  It’s amazing the simple everyday tasks you miss when you can’t accomplish them.  Each daily chore I accomplish is a small victory for me. 

Scott prepared the entire Thanksgiving feast for our family this year, except we decided to bake Cornish Game Hens instead of a Turkey. The meal was very tasty and we still felt stuffed just like after eating the traditional Thanksgiving dinner.

On Saturday, we began packing up the condo.  It’s amazing how much “stuff” one accumulates in less than 4 months!  Between the rain, Scott and the kids loaded some of the items into our truck and the van.  We did one final “door dash” dinner with the kids on Saturday night, relishing the convenience of city-living. 

On Sunday, our last remaining boxes and bags disappeared from the condo.  They were stashed in the van or truck like puzzle pieces.  By the time, Scott’s brother Russ showed up to drive the truck home, everything but our perishable food was tucked away in the vehicles.  We were soon on the road, all of us, to Rescue.  The kids were beaming!

Some of you have asked how it feels to be home.  Strangely, it doesn’t feel like I’ve been gone as long as I have.  And though I’m home in Rescue, we’re not actually in our home, so I’ve not slept in my own bed, or cooked a meal in my kitchen.  Our house is currently under renovation that began pre-transplant.  We were remodeling our kitchen and getting ready to put in new flooring throughout our living area.  During some of the weekends Scott made it home, he was able to do some of the work but he was not home long enough to complete major tasks.  And like most home remodels, one thing leads to another, so the project has grown.

I was told pre-transplant that any remodeling of our home would need to be completed before I could live there as I’m not supposed to be around construction with the dust and other airborne materials.  I’m required to wear my mask whenever I’m around a construction site or where a lot of dust is being turned up.  Another issue that also came up was our woodstove.  We only have a woodstove to heat our home and for this first year, the ash created by the woodstove isn’t recommended to be exposed to for extended periods.  We had in our long-term renovation plans to add a back-up source of heat in the form of a gas stove, so that is one of the items that’s been moved up on the list. 

For the time being, we are living on the property in “the guest cottage” formerly known as Grams house.  It is a great transition home for us and much more cozy than the condo.  How long will we be here?  For as long as it takes Scott to complete the projects on our house.  We are very thankful we have a home to stay in while this ever-growing project is underway.  Please pray for Scott to have time to work on our house projects while balancing work. 

Our family thanks our Mighty Lord for the blessings He bestowed upon us throughout this journey.  Many of the trials would have been difficult without His grace and love for us.  We certainly have plenty to be thankful for this season and we continue to look to Him for guidance as the coming year post-transplant can be very precarious.  That’s all for now folks.  May you relish and delight in each moment this Christmas season, as time is a treasure that cannot be returned, renewed or restored.

The following song resonated with my heart when I heard it a few weeks ago and I knew I wanted to share it on my blog.  

Bring the Rain by Mercy Me