Medically busy

A couple weeks ago was the most medically busy I’ve been in a while!
 
Over the last several months I’ve been getting out of breath more easily, and have found myself getting short of breath even walking short distances. My doctor thought that my airways might have narrowed again, possibly triggered by the 2 respiratory infections I had earlier this year. During the first couple years post-transplant my airways narrowed frequently and I needed regular bronchoscopies to dilate them. Thankfully this settled down over time, and it had been over 2 years since my last bronchoscopy. But a couple weeks ago it was finally bronchoscopy day once again! Fortunately it went very well and I recovered relatively easily. They dilated some of my airways and took sputum samples to check for infections. To no one’s surprise they found pseudomonas in my lungs, which has been a recurrent issue. Right now I’m not showing any significant symptoms so we’re not jumping to treat it, and will just continue monitoring the situation. On the plus side, once I recovered from the procedure I definitely noticed that I was breathing better and was able to walk more easily. Hopefully that’ll take care of the issue and I won’t need another bronch for a long time!
 
That wasn’t my only medical procedure though! Back in February my right ear got clogged up while I was recovering from a cold. It was uncomfortable and also impacted my hearing. At first we expected it to clear up on its own, but after a couple months it hadn’t made any progress. I already do regular medicated sinus rinses, so we tried adding a nose spray to open things up. When that didn’t work we tried raising my prednisone for a couple weeks (aka a prednisone burst), which also didn’t help. Finally I made an appointment with a specialist to get my ear checked out. I originally thought I could see my regular ENT, but apparently he only does sinuses, so I had to go see a completely different ENT. A hearing test confirmed that my hearing was compromised in that ear, but it also showed that the hearing loss was due to a blockage. So they put a tube in my ear! They poked a tiny hole in my eardrum to let the fluid drain, and stuck a little plastic tube into the hole to keep it open long enough to clear everything out. They said since it had been so many months the fluid is probably thick and will take time to come out, so the tube will keep the hole open for 6-12 months before falling out. Getting it in was uncomfortable, but I felt an IMMEDIATE difference both in terms of less pressure in my ear and being able to hear MUCH better. During the day my ear feels fine and I don’t even notice the tube. Overnight, however, the fluid drains out when I lay on my side. It’s a little uncomfortable and a little gross, but it’s better than not being able to hear!
 
After not having much going on medically for a while, 2 procedures in one week felt like a lot! Thankfully they were both pretty routine, and both produced immediate results. Hopefully they’ll just be an unexpected bump in the road and I won’t need any more procedures anytime soon!

2 year update

It’s been a LONG time since I wrote a health update. That’s partially been because, thank G-d, things have been going pretty smoothly! That doesn’t mean NO complications, just nothing major. Honestly, just maintaining a healthy baseline involves a bunch of medical stuff. I have to get bloodwork at least once a month, and sometimes more often if something is out of whack and needs to be monitored a little more closely. That something is usually either my Tacrolimus (anti-rejection med) levels being off and requiring a dosage adjustment, or my kidney levels being worse than usual. My kidneys have been struggling a bit, which is expected thanks to the Tacrolimus, but thankfully are still chugging along at a reasonable rate. We recently discovered that they still respond well to extra hydration, so if I drink A TON of water (which is really hard for me!) my levels are almost normal. Aside from bloodwork, I have a bunch of appointments that I need to have on a regular basis. Transplant clinic at least every 3 months, endocrinologist every 6 months, dermatologist at least annually, ENT at least annually. Then there are the minor procedures, such as getting my feeding tube changed every 6-12 months. I no longer require supplemental nutrition, but I DO rely on the feeding tube for additional hydration overnight to maintain my kidney function. Sometimes I’m on top of changing it and it’s just a routine appointment, and sometimes it gets slightly dramatic, such as a few months ago when I was overdue for a change and then accidentally yanked it half out of my stomach, resulting in it painfully sticking out of me overnight until I could get in for an emergency appointment the next day. I also have a Reclast infusion that I get once a year to try to offset the damage that long-term steroid use has done to my bones. And of course aside from all this, I take a ton of medication every day to stave off rejection and keep my body functioning. So even when things are medically calm, there’s still a lot going on!
 
I think the biggest complication that I’ve had was at a dermatologist visit last year. The risk for all cancers goes up significantly after transplant due to the anti-rejection meds, but the risk of skin cancer is PARTICULARLY high. At my last appointment they found that 3 small bumps on my face were pre-cancerous and needed to be removed. It wasn’t a big deal at all, the doctor froze them off during the appointment and I just had to deal with some unpleasant blistering afterwards, but even pre-cancerous was still a scary thing to hear. I have to be very careful about sun exposure and check my skin regularly for anything unusual, and of course keep up with regular dermatology appointments to keep an eye on things.
 
There’s another reason I fell out of writing health updates though, and that was thanks to Trikafta. Trikafta is the groundbreaking CF drug that came out shortly after my transplant. My doctors wanted me to take it to improve my miserable CF sinuses and reduce the risk of infections dripping down into my lungs. The first time I tried taking it about a year after transplant, I got REALLY depressed and fatigued, so we discontinued it. We decided to try again at a lower dose in July 2022. I seemed to do better at the lower dose, but when we tried to increase it I immediately had a bad reaction, so we dropped back down to the initial dose. I still ended up struggling with depression and extreme fatigue, but wanted to stick it out and see if the side effects faded with time. In January of 2023 we tried adding an anti-depressant to see if that would help with the side effects and allow me to stay on Trikafta. By June of 2023, however, it was clear that the depression and extreme fatigue were not going away. I decided it wasn’t worth being miserable and dysfunctional just to maybe improve my sinuses, so we discontinued the Trikafta and have no plans of trying it again. It took a WHILE for things to improve even once I stopped taking it, but thankfully I’m doing much better now. I still struggle with fatigue, but it’s back to the level I was dealing with before Trikafta, and my mood is MUCH better. It’s a shame that I waited so many years for a drug that targeted my genotype, only to be unable to tolerate it. At least it makes me feel a little better though that I didn’t end up missing out on anything by getting a transplant before it came out.
 
My only other “complication” is that after not catching any infections for over 4 years post-transplant, I managed to catch 2 colds this year, one in January and one in April. My symptoms were relatively mild, but with any infection there’s always the risk that it could trigger rejection. Thankfully I did NOT have any rejection after either illness – and in fact have not had any rejection since my transplant! Hopefully I can continue that streak, and also keep myself infection free for at least the rest of this year!
 
That’s pretty much what’s been going on the last couple years. Now that I’m finally caught up, I’ll try to be on top of writing health updates more regularly – but let’s hope I won’t have much to talk about!!

Happy 5th Lungiversary to me!

5 years!!!

Sunday May 12th was my 5th lungiversary! 5 years is statistically a Big Deal, as around half of lung transplant recipients don't survive 5 years after transplant. To not only survive but be doing really well and have had NO rejection during those 5 years is amazing!

We knew we had to celebrate this incredible milestone, but we thought it would be rude to host a party on Mother's Day (even though I actually got my transplant on Mother's Day!). We pushed the party off for a week, and Sunday was the day! We started off with a bagel brunch in my mom's backyard, before going to Philly for a sightseeing trolley tour! I had a great time spending the day celebrating with family and friends, and really appreciate all the people who came out to recognize this special occasion!

I also was surprised on Shabbos by several friends from my synagogue who sponsored kiddush in honor of my lungiversay! They even got me a cake for the occasion! Between kiddush on Saturday and the party on Sunday, it was a very celebratory weekend!

I am so grateful not only for being here to celebrate 5 years post-transplant, but for having so many people who love me and share in my joy! Here's to many more lungiversary celebrations!