Post-op update

Surgery went well, of course I'm in pain, but I've definitely been through worse. Now for the 24 hour nose bleed and not being allowed to blow my nose, fun stuff. I'm settled into my hospital room, and hopefully should be discharged tomorrow. And I just got some Percocet so hopefully life will be better soon.

Slogging towards surgery

Well, I haven’t exactly been living my best life lately.

10 days of IV antibiotics was not fun. I started off with some (thankfully minor) PICC line issues, and ended up getting 3 dressing changes during the first 5 days, so that was great for my sensitive skin. Then the area around the suture holding the PICC in place became red and painful, so the suture had to be removed. I was mad that they put in a suture anyway though, so that was actually a relief. And then there were the side effects. The antibiotic absolutely trashed my digestive system, which wasn’t fun. I was also super exhausted, and had some weird unexpected reactions like random heart palpitations. Nothing too terrible as potential side effects go, but it wasn’t comfortable or enjoyable.

I was also hooked up to a pump 24/7. Due to the fact that we were fighting multiple infections, including a strain of pseudomonas that is resistant to most antibiotics, they could only find one antibiotic that would be effective. That antibiotic, Zosyn, has to be given every 6 hours. I had 2 options: I could run the infusion myself every 6 hours using a little self-infusing device called an Eclipse ball, which would mean never getting more than a few hours of continuous sleep for 10 days straight. Or I could get a pump that would run the infusions automatically and only needed to be set up once a day, but I could never take it off. I’ve used the Eclipse balls for 6-hour dosing before, and I about lost my mind from sleep deprivation, so I tried the pump this time. It weighed about 2 pounds and came in a little carry bag. It was definitely annoying to cart around all day, but that was way better than never sleeping, so I think I’ll stick with it for future infusions.

Fortunately, it worked. After 10 days I was less congested and my white blood cell count came down. It’s funny, after all the congestion I had for decades pre-transplant, I actually barely even noticed the little bit of congestion I had this time around until it cleared up. Congestion is so normal for me that I forgot these lungs aren’t supposed to have any!

And now I’m gearing up for the next round: sinus surgery. Tomorrow I get to have Covid test #4, and Thursday morning I go in for surgery. I’ve been out of sorts and sleeping really poorly recently, and I think I’m stressing about surgery. On the one hand, I’ve done it before, so I know it’s not a huge deal. On the other hand, I’ve done it before, and I know that recovery isn’t pleasant. I also haven’t done it in 11 years, so I don’t entirely know what to expect. And of course I have no clue how it will go and how much improvement I will see. It’s funny, I’m actually stressing more over this comparatively minor surgery than I did for my lung transplant! Before transplant I was SO sick that I didn’t even have the physical or mental energy to stress about it. I just wanted anything that would get me out of the hell I was living through. It also happened so quickly that I barely had time to think about it, since I was only actively on the list for 3 weeks. So this is the first time in years that I have both the time and the mental capacity to anticipate and be stressed about upcoming surgery. I’m not enjoying it.

I’m also not enjoying the fact that I’ll be back on Zosyn for 3 full weeks after surgery. 3 more weeks of this annoying PICC line, 3 more weeks of side effects, 3 more weeks of being attached to a pump 24/7. And of course this is all on top of a global pandemic!

Overall, it’s shaping up to be an incredibly annoying summer. I REALLY hope this all ends up being worth it!

Hello IV antibiotics my old friend

Alright sinuses, that is ENOUGH out of you!

Last Thursday I had a bronchoscopy, which thankfully went well. Once again the airways were narrowed and had to be dilated, so it looks like I’ll still be getting regular bronchoscopies for the time being. Thankfully the recovery wasn’t too bad this time. With that done, I thought my next big medical adventure would be sinus surgery in July.

I thought wrong.

During bronchoscopies they always collect a sputum sample and check for infection, and this time pseudomonas and staph showed up. That’s not great, but it also isn’t the first time I’ve had lung infections post-transplant. These infections are most likely coming from my terrible sinuses, and we’re hopeful that sinus surgery will help significantly. Initially my doctor didn’t think I needed immediate treatment, and planned just wait for the IV antibiotics I will receive after sinus surgery. However, since the bronch I’ve noticed a slight increase in congestion, and this week my bloodwork showed an increase in white blood cells, which indicates that my body is fighting an infection. That’s a problem, since my immune system is suppressed and far less able to overcome infections. Additionally, once my immune system is activated it could easily notice that these lungs aren’t original parts and reject them. That means it’s time to help my body out and zap me with antibiotics to get rid of the infections and send my immune system back to sleep.

This morning I got to have YET ANOTHER Covid test (that’s #3!) so I can go in to get a PICC line placed tomorrow morning. Once that’s in I’ll get started on 10 days of home IV antibiotics to wipe out the nasties in my lungs. After that the PICC line will stay in until my sinus surgery, and I’ll do another round of IV antibiotics afterwards to help clear out my sinuses and protect me during recovery.

I’m definitely not thrilled about having a PICC line for over a month. They’re uncomfortable, and I can’t take a normal shower the whole time as I have to be extremely careful not to get the dressings wet. I’ve been feeling pretty cranky about the whole situation. On the other hand, compared to what I was dealing with before transplant, this is nothing! I’m trying to remember that I know from experience that things could be SO much worse, and that this is a relatively minor bump in the road. Even with the procedures and issues I’ve had to deal with, my post-transplant recovery has really been going remarkably well, and I am SO grateful for that.

Despite everything, Katherine and I got out of the house and went on a nice outing today. Our 3 year anniversary is this Saturday, but we decided to celebrate today before the medical shenanigans get underway. We picked up takeout in Philly and took it to Penn’s Landing for an outdoor dinner on the waterfront. It was great to get out for a bit and do something halfway normal for a change! It’s so important to remember all the things that make this fight worthwhile.

So here I go, back into the fray, once again battling my nemesis pseudomonas and its friends. I hope those little unwelcome invaders are ready, because they’re about to be evicted!!

More procedures

It’s probably not a good sign when a medical professional looks at your CT scan and immediately says, “Oh you poor thing!”

I saw the ENT on Monday to check on my terrible sinuses. They’re always bad, but over the last few months I’ve been coughing a LOT more, which may be due to post-nasal drip. I’ve also completely lost my limited remaining sense of smell. Additionally, I’ve had recurrent infections in my lungs, which may be coming from my sinuses. The CT scan showed that my sinuses are all blocked up and full of polyps, which is kinda standard for CF. Between the ages of 19 and 30 I had sinus surgery 4 times to clear things out, and I only stopped due to feeling that the last couple surgeries didn’t give me enough relief to be worth the difficulty. I mostly just got used to having miserable sinuses, and at this point I haven’t had surgery since 2009.

My transplant doctor has been talking about sinus surgery to clean me out and reduce the risk of lung infections. The problem is that there’s no guarantee as to how much surgery will actually help me. It’s not the worst surgery in the world, but it’s definitely not fun, and it can take months for everything to heal up and see any results. A big deciding factor for me was my sense of smell. The ENT said the damage might already be permanent and surgery might not help, but not having surgery guarantees that the damage will become irreversible. He also said that based on my CT scan, I’ll definitely feel SOME improvement from having surgery, it’s just unclear how much. The only thing we can do is try and see what happens, so I’m currently scheduled for sinus surgery in July.

Even though it was my choice, I’m having all kinds of conflicting emotions about it. For one thing, any surgery is a big deal when you’re immunosuppressed, and it’s typical to get prophylactic antibiotics. So I’ll be hospitalized for (hopefully only) one night afterwards for observation, and then sent home with a PICC line for a few weeks of IV antibiotics. At this point it’s been over a year since I was on IV antibiotics, which is wild considering I used to get them 3 times a year for a month or 2 at a time! So on the one hand I’m super grateful for how much healthier I am, but having to do IVs again is stirring up old memories and fears, and part of me is bitter about having to revisit that part of my life. It’s also hard to force myself to go through what I know is an unpleasant procedure and recovery process without knowing how much benefit I’m actually going to see. It’ll be extremely upsetting if I go through all this and it doesn’t end up improving my quality of life. But there’s no way to know what the outcome will be, so I just have to try and hope for the best.

It also feels like my life these days consists only of sitting at home or going out for medical appointments and procedures. Covid life is definitely getting to me, particularly because no matter what the governor says, I’ll still be on my own personal lockdown due to being in a high risk category. As everything opens up I’ll need to be even MORE cautious, as there will be more spread in the community. It’s frustrating to go through all that transplant entails only to have life look dismayingly similar to how it did back when I was sick. It’s wonderful to be able to breathe, but it would be nice to experience more from life than just managing medical issues.

Speaking of which, tomorrow is bronch day. Which means I had to go get a Covid test today, because you can only go into the OR if you’re cleared. So THAT was fun. Apparently I’m currently on the monthly Covid test plan: this month for the bronch, next month for sinus surgery, and the month after that for my Pulmonary Function Test (PFT). Boy do I know how to party!!

And so my life of lockdown and medical shenanigans continues. Can’t wait for the day that I get to leave at least some of this drama behind and finally get back to LIVING!

As the world burns

My country is burning, and I don’t know what to do.

I mostly avoid posting about current events or politics – partially due to mental and physical exhaustion, partially because it feels like an exercise in futility. But the current situation is so profound that it feels wrong to be silent. Silence is complicity, and I refuse to be complicit.

It’s so easy for those of us who are insulated from or unaffected by racial discrimination to point fingers and decry the violence that has erupted. But did we also decry the violence that brought things to this boiling point? Did we also take a stand against lifetimes of inequality and oppression, and one senseless death after the next? Why is it only NOW that so many people suddenly feel the need to speak up and condemn? I certainly don’t agree with violent riots, but part of me definitely understands them. It’s very nice to talk about peaceful protests, but people have been protesting peacefully for decades, and little has changed. When peaceful protests are ignored, violent protests follow. Violence is tragic, but it certainly forces an immediate response.

At the same time, it’s extremely frustrating to watch the narrative get hijacked. I watched the news tonight, and most of the reporting focused on looting and vandalism, while the actual protests and the cause they champion seemed to fade into the background. It’s infuriating that activists who are actually seeking justice are being ignored in favor of individuals who are simply using the cause as an excuse to sow chaos for their own personal gain.

I look at the world, and I feel a terrible hopeless cynicism. The problems are so big, so deeply entrenched, that they feel insurmountable. I despair when I see the chasms dividing our country, how quick people are to villainize and discredit everyone they disagree with, how little effort there is to open real dialogue and attempt to build bridges. Even as the country burns, I still can’t see change happening. I just see everyone backing further into their corners and doubling down on everything they already believe. I watch and I wonder how long we can go on like this, how much more we can withstand before society collapses into irreparable lawless chaos.

The world is sick, and I feel the need to do something to help heal it. But I also feel small and helpless, immobilized by my limitations. I can barely leave my apartment, much less go to protests or join in community work. So I watch, and despair, and pray that someone else will do the work for me. And soon even that will become too much, so I’ll close my eyes again, and turn away from the pain and tragedies that I am currently powerless change.

I will retreat back into silence, but it’s not because I don’t care. It’s because I care too much.

Happy Lungiversary to me!

It’s officially been 1 year since my successful double lung transplant! Happy lungiversary to me!!

The last few months have been emotionally intense. Obviously the whole world is in crisis right now, and everyone is struggling and suffering in various ways. I have the added bonus of being in a high risk category and getting to worry about yet another threat on the long list of things that could kill me. But in addition to that, I’ve spent a lot of time remembering what life was like last year during the months leading up to transplant. Thankfully my memories of what it was like to be slowly suffocating to death are faded, and most of that whole time period is a bit of a blur. But I do still remember that it was horrible to the point that I wished for death just so the suffering would end. During these last few months I kept thinking about where I was a year earlier, and being a little traumatized by the memories. It’s been worse during the last couple weeks, which is when I struggled the most and went into respiratory failure last year. Getting a taste of a slow and painful death takes more than a year to get over.

But on May 12^th the memories were different. I remembered getting the news, and calling Katherine and my mom to tell them. I remembered waiting to be brought down to surgery, and then going down to pre-op. My memories of that day are also hazy, but at some point in the ICU afterwards I asked how long the surgery took, and wrote down all the times. 2:19 PM – into the OR. 4 PM – anesthesia. 6 PM – first cut. 12:17 AM – out of the OR. And 6:15 PM on May 13^th, less than 24 hours after surgery – taken off the ventilator and extubated.

I didn’t have any sort of major celebration right after the transplant for multiple reasons. The immediate aftermath of a lung transplant is a crazy whirlwind of pulmonary rehab and testing and doctor’s appointments. It’s exhausting and stressful and painful, and putting together a party was not on my priority list. Due to heavy immunosuppression I also couldn’t be in crowded spaces, which makes it a little difficult to host anything. But most importantly, I was well aware that the first year after transplant is a critical and tenuous time, and I didn’t feel comfortable celebrating until I saw how things went.

As we got closer to the year mark with relatively smooth sailing, I started considering whether I should have a party on the actual lungiversary, or wait a month or 2 for my immunosuppression to be lowered so I could be around more people. Never did I imagine that all in-person gatherings would be cancelled anyway by a global pandemic! Initially I was too upset to plan any sort of celebration. Having life basically be cancelled and being cooped up in my apartment week after week with no end in sight didn’t exactly have me in a festive frame of mind. But as the date came closer, I started to wonder… Maybe we could do a drive-by celebration, as has become popular these days? Maybe a Zoom party? Maybe both?? So I flung it out to Facebook, and the enthusiastic response convinced me to go for it. And I’m so glad I did!! It was so wonderful to see everyone who turned out, both in-person (at a social distance of course!) and online. The car parade in particular was wonderful fun and really got me into a celebratory frame of mind! I got balloons and streamers, and printed posters for my balcony, and baked my specialty lung-shaped cookies for the occasion. Seeing everyone drive by cheering and honking, waving posters, streamers and balloons blowing in the wind, was absolutely amazing! And then I ended up on the news to boot! What an amazing way to celebrate the incredible gift of life!!

At the same time, I’m also keenly aware that while we’re celebrating, somewhere out there another family is mourning. Somewhere out there another family is coping with death instead of celebrating life, and remembering the tragic loss of their loved one. This is the duality of transplant: my life could only be saved if someone else died. I am so endlessly grateful to my donor and their family, and I will never forget their pain and loss. I will always wish there had been some other way.

One year. It’s amazing how much can change in just one year! I’m still recovering, and COVID-19 has thrown unexpected complications into that process. And of course life after lung transplant is never guaranteed, and I will always live with a certain amount of fear and caution and what-ifs hanging over my head. But, against all odds, somehow at 41 years old I’m still here, still laughing, loving, and celebrating. And hopefully I’ll have the opportunity to celebrate many more lungiversaries for many years to come!

I'm famous!

We did a drive-by celebration for my 1 year transplant anniversary, and Channel 10 showed up! They even interviewed me, and I got to talk about the importance of organ donation. It wasn't the celebration I expected, but we did the best we could under the circumstances and I ended up having a terrific time!

A friend also wrote a lovely article about me for a local paper, the Jewish Community Voice:

Transplant recipient marks her one year lungiversary with socially distanced celebration

I'm officially famous!