Moving up in the world

Had my first post-bronch pulmonary function test (PFT) yesterday, and my lung function is up to... 79%! That's an improvement of almost 10% from where I was 10 days earlier! I *told* you I'd get back to 80% and beyond! 😊

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!!

         

Another speedbump

First, the good news: it’s NOT rejection!

I’ve been kinda quiet about my health status the last couple weeks, because I didn’t want to say anything until I knew what was going on. Now I know what’s going on: but first, we need to go back to something that I think I might not have mentioned. Immediately post-transplant my sputum culture showed some of the infections that I had pre-transplant. My treatment team didn’t seem too concerned, however, since my new lungs don’t produce the sticky CF mucus that would allow infections to settle in and make big problems. With antibiotics those infections eventually disappeared, and I had infection-free sputum cultures for the first time in decades. That lasted for a few weeks, but 2 weeks ago the infections showed up again. This isn’t surprising, as I still have my same old terrible CF sinuses, which have the same infections and will probably keep re-infecting my lungs. Again, my treatment team wasn’t concerned, and we just put me back on an inhaled antibiotic to treat the infections.

A week later, not only was I still slightly more congested, but I was also wheezing a little. Worse, my PFT (Pulmonary Function Test) numbers had dropped, from 80% (!!!!) to 75%. We added an oral antibiotic and continued monitoring. This week the wheezing was more pronounced and I started having a dry, scratchy cough early in the morning. Today my PFTs had dropped even more and were down to 69%. I was trying not to panic, as I was convinced this meant that I was experiencing rejection. However, to quote my doctor, “rejection doesn’t wheeze.” Apparently it also doesn’t cough, or choose sides, as my right side sounded junky and wheezy while the left side was clear. My doctor said it’s just scabs and scar tissue narrowing the airways on the right side, which they had already seen during my last bronchoscopy. During my next bronchoscopy they’ll go in and open things up again, which should solve the problem. Originally I wasn’t supposed to have a bronchoscopy until the end of August, but they’re going to move it up since I’m having issues. I hope it happens soon so I can stop wheezing and rattling!

Despite the drop in numbers, I’ve still been feeling pretty good! I’m still keeping active and my endurance hasn’t dropped significantly. I think things were SO bad before transplant that even dropping down to 69% still feels AMAZING! My biggest problem, aside from wheezing and rattling being mildly uncomfortable, has actually been… my hips! During my last couple weeks of pulmonary rehab I started having significant hip pain. We think the rigors of rehab after being mostly bedridden for so long might have been too much for my body. The pain level goes up and down day by day, but there are some days where I’m almost hobbling from the pain. My lungs are ready to go, but my body not so much! I’ll be starting physical therapy this week to address that as well as back pain. My back has been a mess for years from all the coughing, and being bedridden and going through major surgery didn’t do it any favors. Hopefully I’ll actually be able to do something about it now that I hardly cough anymore!

So that’s the story around here. Speedbumps are expected during this process, and as speedbumps go it sounds like this isn’t a bad one. Hopefully I’ll get those numbers back to 80% and beyond soon!

Transplant humor

I Survived a Lung Transplant and All I Got Were These Stupid T-shirts  😂
#TransplantHumor

Graduation!

Officially graduated from pulmonary rehab! But the hard work continues as now I need to keep up with a home exercise program to maintain my progress. For now though, we're celebrating with cake!

On the road again!

Finally got clearance to drive! Between being sick pre-transplant and recovering afterwards, it's my first time behind the wheel in almost 4 months!

Happy 4th of July!

Such a fun 4th of July! Thank you Avigayil for shlepping all the way out here from NYC just to visit me for a couple hours! Somehow we managed to pull off a delicious barbeque and still got her to the bus back just before it left! Then later Katherine and I headed off to Cooper River Park with our $10 box of fireworks from Target to fulfill our patriotic duty of blowing stuff up. Apparently Cooper River Park is the place to be at 9:30pm on the 4th of July! There were a bunch of other people setting off fireworks in the parking lot, including a group who were adorned with multicolor glow stick necklaces. We (aka I, because Katherine is "sensible") set off our fireworks without losing any fingers, and shared our sparklers with some small children and made them very happy. All in all it was a great day!

A trunk full of summer: beach bag, BBQ supplies, grill, rockhounding bag, and kites - all fitting so nicely because there's NO WHEELCHAIR 😀

The aftermath (yes we cleaned it all up and threw it away)