Double Lung Transplant Recovery: Family Weekend in Durham

This is a post that I am very much looking forward to sharing with you. Over the weekend, Finn and I traveled to Durham and enjoyed the best visit with my parents.

It was Finn’s first time seeing Mémé and P-Paw since mid-October and the reunion was a sweet one!

I was also overjoyed to find my mom more herself than I have seen her in a year. As I shared in the post about my mom’s journey with pulmonary fibrosis, she experienced an acute exacerbation of her disease shortly after Finn and I visited Florida last March. During our March visit we took outings to a local zoo, went for a two mile nature walk and ran around on the beach with Finn. By the time were back in Florida for Finn’s birthday in May, my mom was mostly homebound and unable to do much of anything. We visited again in June and she was on 24/7 oxygen and it was clear things weren’t going to improve.

The past year has been incredibly difficult on my family but I want to focus on the positives in this post. I also just don’t think I’m ready to fully dive into the emotional side of having a terminally ill parent and still have a lot to process on that front. That said, this visit was the first time in a year that I have felt hope that my mom is going to be “my mom” again and that she will get to live more days that are filled with ease, fun, family, friends and adventures.

Overall, her recovery from her double lung transplant on January 15 is going well. She spent 39 days in the hospital and was discharged on February 23. Since her discharge, she has been participating in daily pulmonary rehab to help her rebuild strength, stability and balance and has been closely monitored in regular clinic visits. Here are some high-level notes on her recovery/progress.

• All of her labs, pulmonary function tests, bronchoscopies and x-rays have looked pretty good since discharge. There are no major issues.
• Her kidneys are being stressed by some of the medications so she’s been encouraged to drink as much water as possible and they’ve been making some adjustments to her meds.
• Just in the last week or so she’s been doing much better with swallowing and that’s allowed her to really start enjoying food again. Her stomach/digestion is finally starting to even out a bit too.
• A primary focus right now is on weight gain. She was 105 when she went in for the transplant and 98 pounds when she was discharged. She is making slow progress and I hope that trend will continue since she’s getting her appetite back and feeling more confident in her swallowing abilities.
• She still feels a lot of overall fatigue and that overall “jello” sensation in her muscles (especially legs) at times. This is very common after the surgery she had and after long hospital stays and part of why they work transplant patients so hard in pre-trasplant rehab. They know they will lose so much strength/energy in the hospital so they want you to go in as strong as possible. She rests a lot and takes a lot of cat naps but is also really pushing herself to do things around the house, get out and walk/get fresh air, get exercise, etc. It will just take time.
• She’s gaining a lot of confidence in her ability to walk without the rollator. She did great while we were there over the weekend!
• Her overall mental status has improved markedly. Her personality is definitely back in full force and she can easily converse. The only thing she really struggles with is recalling certain words at times.
• My dad is a rockstar at keeping track of all of her meds, food intake, vitals, etc. He has alarms set for all of her meds and keeps them organized for her. He also keeps detailed notes of her food intake and vitals (weight, temperature, blood pressure, blood sugar, etc) to share at clinic each week.

Of course there is so much more that I could share but this is a good overview!

A NIGHT AT THE “SHOW AND TELL” 

Back to our visit! We were in Durham for a little over 24 hours and we sure did pack in a lot of good food and fun. As expected, Finn adored staying at the “show and tell.” The staff put us in a room right next to my parents so he had a great time going back and forth.

He also loved being able to go downstairs for breakfast in his jammies and ate a bagel, sausage and waffles with syrup that my dad made him. (Also, can we talk about his hazel eyes?)

And the 15-year-old birthday boy was just as sweet as ever.

A TRIP TO DUKE GARDENS

The activity that my mom chose for Saturday afternoon was a visit to Duke Gardens. It’s 55 acres of specialized gardens located right in the heart of Duke University. They draw over 600,000 visitors per year. Admission is free and the gardens are open 365 days a year.

We missed full spring bloom by a couple of weeks but the gardens were still gorgeous. It’s so special that Duke has something so peaceful, relaxing and beautiful right on campus and right next to the hospital. We saw many people enjoying the gardens doing everything from sketching to walking with family to picnicking and more. Look closely and you can see my dad and Finn on the bridge!

We spent just under two hours at the gardens and probably saw about a third of them. This was the most walking and biggest outing my mom has done by a landslide so we took it easy and took lots of breaks.

Finn had a great time running around the “bamboo forest,” climbing rocks, throwing rocks in the lake and exploring.

I couldn’t resist snapping a photo of this signage. I don’t think it’s the kind of burpee learning that comes to my mind. 😉

SATURDAY NIGHT PIZZA PARTY

We scheduled a pick-up order from Pizzeria Toro when we got home from the gardens. My dad, Finn and I walked down to a neighborhood playground while we waited for our food and then hopped in the car to pick it up on the way back.

Here’s what we shared:

• Tuscan Kale Salad – marinated in garlic oil, lemon juice and parmesan and topped with pine nuts, chiles, parmesan. This salad has a kick but I love it!
• Sweet Fennel Sausage Pizza – with roasted peppers, provolone and marjoram.
• Prosciutto Cotto Pizza – prosciutto cotto, green olives, asiago and rosemary.

We ordered from Pizzeria Toro the last time Finn and I visited together back in October and loved it so much that we just repeated our same order. Their pizzas are SO good and I especially love their crust. Perfect balance between crisp and chewy and great flavor.

Finn ate a lot of the pizza but as soon as he was done he asked what was for dessert. I told him I’d take him out for ice cream somewhere and he was thrilled about that idea. I was thrilled that my mom wanted to join us! After a quick Google/Instagram search, I selected Pincho Loco and it did not disappoint. It’s a Latino-owned shop offering things like homemade ice cream, popsicles, milkshakes, piñatas, special Latin desserts and pastries and more. Fun vibe and great treats! Finn had chocolate with sprinkles and I had salty caramel with chocolate truffles.

SUNDAY MORNING RUN

Finn spent some one-on-one time with my parents on Sunday morning while I got in a five-mile run around Duke East Campus. Weather was awesome for me and Finn loved “snuggling meme” while I was gone. I tried to get him to come back to our room while I showered and got packed up but he was happy with his grandparents. 🙂

FAMILY OUTDOOR LUNCH 

My dad and I had been wanting to try an Ethiopian restaurant right down the street from their hotel since they first arrived back in late September. I was so surprised to learn that my mom was up for walking down there to eat on the patio when I got showered and dressed after my run. I’m pretty sure this was my mom’s first meal at a restaurant in at least six months if not a year.

Goorsha was AMAZING. I wish this restaurant was in Charlotte because it would be on a monthly rotation for me. I had a vegan sampler plate where I got to pick three dishes and a side. I chose ground chickpea stew, red lentils with turmeric and a mix of cabbage, carrots and potatoes with turmeric, onions and garlic. For my side I had the beet root salad and I wish I had the recipe for it. So good. Lots of injera to scoop all of this deliciousness up.

We also shared an appetizer of steamed corn bread layered with sautéed collard greens and short ribs that was so good. The collard greens at Goorsha were out of this world.

I think this was only my second time trying Ethiopian food and the first time was 10+ years ago. It will not be 10 years until my next Ethiopian meal and I’ll be checking out the Charlotte options ASAP!

If you’re wondering what my child ate at Goorsha…that would be nothing, haha. Thank goodness there was an Irish pub right next door so we popped in there and ordered him a grilled cheese to go. He happily ate that on the patio as we enjoyed our Ethiopian feast.

A PATISSERIE STOP 

We stopped into Miel Bon Bon on the walk back to the hotel after lunch. It’s a locally owned bake shop offering handmade chocolates, desserts, coffees, cakes and more. Everything was so aesthetically pleasing to look at and tasted wonderful too!

I had a cappuccino and a raspberry macaron. My parents both had slices of cake and enjoyed them. Now that my mom is getting her appetite back, I told her she needs to put this place on regular rotation since it’s a short walk from the hotel!

We all walked down to the playground so that Finn could run around a bit before the car ride home. Finn and I headed back to Charlotte around 3p with very happy hearts.

The next big step is getting my parents back to Florida! Hopefully they will get cleared to head home soon. <3

Thank you again for the love, support and prayers that you have extended towards me and my family over the last few months. We are so very grateful.