Donor Dash!

Current goal: do the real Donor Dash this year instead of the inpatient version! Time to start training!!

Also, if anyone wants to see last year's inpatient donor dash, I actually recorded it for posterity: https://youtu.be/t7tZO8gqt0Y

Gift of Life Donor Dash 2020

Post-transplant video: Extubation and first breaths

If anyone's interested in seeing it without having to watch the whole long transplant story video, I put up the video of me being taken off the ventilator and taking my first independent breaths post-transplant. Be warned: being taken off the ventilator involves me being extubated, which is when they yank out the long tube that went down my throat and into my chest to breathe for me. Reactions have ranged from "Cool!!!" to "GROSS!!!" so you might want to skip it if you're squeamish!

My lung transplant story, now on YouTube

I finally put together a video about my transplant! I drafted my mom and Katherine to help tell the tale, and included pictures and videos of the whole process, including video of me being extubated in the ICU and taking my first breaths less than 24 hours after transplant. Sorry for the length, it's kinda hard to condense such a major life experience! I noted times and different topics we discussed in the video description to make things easier to find.

3 month bronchoscopy!

Check out https://youtu.be/W1pQaEHWdDk if you’d like to see a video recap of bronchoscopy day!

Thursday was my big bronchoscopy day! Post-transplant it’s standard to have bronchoscopies after 6 weeks, 3 months, 6 months, and 1 year, and then annually after that. During a bronchoscopy they put a scope down my throat and into my lungs to look around and make sure everything is ok, and take sputum samples and biopsies to check for infection and rejection. In my case, we already knew things weren’t 100% perfect and that they’d have to open up and clear out some airways. Thankfully, I’m under general anesthesia for this whole process. General anesthesia used to be a big scary deal with my old lungs, but seems to be a lot easier and more standard with my shiny new ones. So on Thursday I went to HUP, changed into my very fashionable hospital gown, and went to sleep for a few hours while they fixed me up.

My biggest problem post-bronchoscopy is usually that my throat is very sore and it’s difficult to eat. This time we came prepared with a quart of Rita’s water ice in a cooler so I’d have something cold and delicious to soothe my throat. The nurses and other patients in the recovery room were quite impressed with our foresight and planning! Katherine also continued our new tradition of getting a cute little stuffed animal from the gift shop for me to wake up to post-bronchoscopy. So far there are two, and I’m calling them the Bronchoscopy Collection. At least now I have something fun to look forward to each time!

Shortly after the procedure they let us know that a few airways had been narrowed on the right side and one was narrow on the left side, so they went in and inflated a balloon to open and widen them. There was also necrotic tissue blocking some airways on the right side, which sounds scary but apparently is common. They saw the same thing during my previous bronchoscopy, and both times they were able to remove the dead tissue and open up the airways. I’m wheezing a lot less now, though I’m still a bit congested as I clear out the mucus that was trapped during the last several weeks. Hopefully things will heal up and clear out by the time I see the doctor again in 2 weeks, and my pulmonary function numbers will go way up!

Today I got my test results from the sputum samples and biopsies, and the verdict is… no infection and no rejection! We didn’t get cake this time, but it’s very exciting and encouraging that things continue to go so well! Now I just need to get the hip pain under control so I can get back on track with my exercise routine and rebuild my strength and endurance. I’m also still having some pain in my incisions, though it’s gotten MUCH better. Katherine keeps reminding me that it’s only been 3 months, and that I need to relax and not push myself too hard. Which is hard when I’m feeling SO much better and more capable. I want to conquer the world NOW!

Fiiiine, I guess I’ll try to cut myself some slack and allow this process unfold at its own pace – but I WILL get these lungs back up to 80% and beyond! Just you wait and see!!

         

Donor Dash!

So this happened. Welcome to the 2019 Gift of Life Donor Dash, transplant unit style!

Hospital decor: Pole People!

The Pole People make their YouTube debut!

Throwing darts and hoping for a hit

Much to my surprise, I got a call Thursday morning saying that they DID have a room for me and could do a direct admission! Even the nurse was shocked, as it has been almost impossible for them to direct admit anyone recently. I was SO relieved not to have to spend hours waiting in the ER, and I fully attribute this blatant miracle to the power of Purim! Even better, they didn’t call me to come in until about 4pm, so I got to enjoy a full Purim seuda without interruption. Celebrating Purim before going inpatient definitely helped put me in a better frame of mind. I also realized that getting mishloach manot immediately before being hospitalized was absolutely perfect. Instead of going shopping for hospital snacks, I just waited at home and the snacks came to me! Winning!

We did a CT scan, and fortunately I DON’T have a pulmonary embolism. Unfortunately, I once again managed to develop pneumonia while on IV antibiotics, because I am super talented. This time I decided to take it to the next level and get pneumonia in BOTH lungs, because I’m an overachiever. If you’re gonna do something, may as well do it right!

There’s no way to tell whether the pneumonia is due to infection or due to aspirating reflux in my sleep, so we’re tackling both at the same time. On Monday I’m hopefully having my G-tube changed to a G/J-tube, which is less likely to cause reflux overnight. In terms of infection, the original plan was to continue IV antibiotics, as well as a whole lot of nebulizers and chest PT, and see if I had any improvement by Monday. If I didn’t improve, the plan was to start treatment for the NTM (non-tuberculosis mycobacterium) that’s been showing up in my sputum in recent months. The problem is that requires 3-6 months on multiple antibiotics, one of which is IV Tobramycin, the antibiotic that gave me tinnitus and can cause hearing loss. I REALLY wasn’t thrilled about having to choose whether I wanted to breathe or whether I wanted to hear. HOWEVER, on Sunday they got some new test results back, and discovered that my pseudomonas infection is now resistant to 2 of the 3 antibiotics I’ve been taking. Surprise! They also found one more antibiotic that it should be susceptible to, so the new plan is to try that for a week and see if I feel any better. I’m all for anything that pushes off going back on Tobramycin!

It was a pretty rough weekend. Between coughing, fevers, being poked and prodded at all hours, and just generally feeling gross and uncomfortable, sleep hasn’t been happening on any sort of regular basis. Additionally, I have been coughing up A LOT of mucus. Getting it out is definitely a good thing, but it isn’t coming out easily, and the whole process has been exhausting. My throat is ragged from all the coughing, and I’m having trouble sleeping because I keep waking up choking on mucus. I’m not exactly living my best life right now, but hopefully the new antibiotic will help and things will pick up soon.

I’ve also been doing vlogs of my hospital adventures if anyone is interested in a slightly different version of these health updates. If you subscribe to my YouTube channel and click the notification bell, you’ll get alerts when a new post goes up. Let me know what you think!

https://www.youtube.com/channel/UC0yVedzFwXoGoqVI_Sp9NhA

YouTube here I come!

Well, after months of pondering and friendly nagging, I’m finally making my YouTube debut. I have no idea where I’m going with this or how often I’ll post anything, but the first video is officially up. Feel free to share and comment on the video and give me those sweet sweet likes and views!