Not just a cold

Well, it’s not just a cold. It’s RSV.
 
My transplant team doesn’t mess around with any signs of infection, so even though my symptoms weren’t too bad to start with, they brought me in for a viral swab on Tuesday. We got the results on Thursday, and it turns out I have RSV. Unfortunately there isn’t much they can do for RSV aside from symptom management. So I’m taking Mucinex, and doing nebulizers twice a day, and trying to stay super hydrated. Normally they would have also given me steroids, but they don’t want to do that since I still have an open wound, and steroids can impede healing. Instead they prescribed an antiviral, which I started yesterday.
 
Things have honestly been pretty pathetic around here. Katherine is also sick, and we assume she also has RSV. She’s been utterly miserable and says it’s the worst cold she’s had in her entire life. My symptoms were more manageable to start with, but over the last few days I’ve had a significant increase in both head and chest congestion. Though I can feel the congestion rattling around in my chest, I’m having a REALLY hard time getting any of it out. I already have trouble clearing congestion due to my airways narrowing post-transplant, and I have a feeling they’re even narrower now thanks to the RSV. It’s pretty uncomfortable, and I had a hard time sleeping last night because I kept feeling like I was choking on mucus. Today has been a little easier, so hopefully I’m past the worst of it. Fortunately I haven’t had any fever and my oxygen levels have remained stable, so maybe I’ll manage to stay out of the hospital and finish weathering it at home.
 
RSV would be a lot even under the best of circumstances. But I’m also dealing with the wound vac and an exhausting infusion schedule. I also have a busy week coming up, with appointments with the plastic surgeon as well as with Infectious Disease. It really is A LOT to deal with all at once, and I’m feeling pretty beat down. I feel like after having a couple years where things were relatively quiet medically, I’m now making up for it all at once! Maybe this week I’ll finally get some answers as to when I can be done with the wound vac and the IV antibiotics and start getting back to some semblance of normalcy!

Keeping busy

It’s so good to be home!
 
What a relief to be out of the hospital! I am GREATLY appreciating my comfy bed, and having access to a kitchen full of food whenever I want, and finally getting some peace and QUIET away from all the noises and interruptions and poking and prodding of the hospital! And, of course, getting to be with my amazing partner, who deals with so much and takes such wonderful care of me! Home is good!
 
That doesn’t exactly mean I’m living my best life here. I still have the wound vac, which is uncomfortable at best and sometimes pretty painful, particularly during dressing changes. My skin can be sensitive to adhesives, and less than 24 hours after the wound vac was put on I actually got a welt from the first dressing they used. The welt is slowly healing, and we’re using a different dressing now that I’m less sensitive to, but my skin still isn’t loving it and I’m often itchy.  Then there’s the dressing changes, during which they remove and replace the sponge packing the wound. This happens at least 3 times a week, and is painful every time. Most of the time I can get by without taking anything stronger than Tylenol, but for dressing changes I take a small dose of oxycodone to make things more comfortable. There’s still no word on how long I’ll have the wound vac, but it will be for at least another week, which is when I have an appointment with the plastic surgeon to assess my progress and see if they’re ready to stitch me up. So far everyone has said that the wound is healing nicely, so I’m hopeful that I won’t need the wound vac much longer!
 
Aside from all that, I’m also on a pretty rigorous infusion schedule. I run my IV antibiotics 3 times a day at 6am, 2pm, and 10pm, and each infusion runs for about 3 hours. To make it more complicated, for some reason the pharmacy isn’t able to fit the full dose into one bag, so halfway through each infusion I need to switch to a 2^nd bag. All that doesn’t exactly leave a lot of time for sleeping. I’m definitely getting much better quality sleep at home than I was in the hospital, but both Katherine and I are still pretty exhausted. Right now they haven’t set an end date for the antibiotic, and are waiting to see how the wound heals. I do have an appointment with Infectious Disease at the end of next week though, so hopefully we’ll have a clearer plan then.
 
I’ve also been kept busy with nursing visits! I have 2 home care agencies following me, one to take care of my infusions and PICC line, and one to take care of the wound vac. I had an infusion appointment the day I came home, and then a wound vac appointment over the weekend. And today was especially busy, because I had both! The infusion nurse came in the morning to draw my weekly labs and change the dressing on my PICC line, and the wound care nurse came in the afternoon to change the dressing on my wound vac. That will be the schedule every Monday for as long as I have both the IVs and the wound vac, and it’s a lot! In addition to that I also have wound vac appointments on Wednesdays and Fridays. Being sick is a lot of work!
 
And because we didn’t have enough going on, Katherine and I came down with colds over the weekend. Katherine is feeling pretty miserable, but thankfully my symptoms aren’t too bad so far. But my transplant team doesn’t mess around when it comes to infections, so tomorrow we need to shlep back into Philly so they can take a viral swab and try to identify what I’ve caught. Planning anything is difficult with my infusion schedule, plus I have to lug the wound vac with me wherever I go, so I’m not exactly looking forward to leaving the house. At least it shouldn’t take long.
 
So that’s the story around here. My days are jam packed with medical shenanigans, and I am TIRED. But I am very, very glad to be dealing with all this from the comfort of my own home!

Home!

After almost 2 weeks in the hospital, I'm finally HOME!

Still here

Aaand I’m still in the hospital.
 
We finally got the results we were waiting for back this morning, and my immunoglobulin G was indeed low. That meant I needed an infusion of IVIG to bring it back up and help me be more able to fight off infections, including this pseudomonas infection. Unfortunately the infusion takes a few hours, so there was no way we could get it done in time for my visit with home infusion. So I got to spend another day enjoying the amenities of Hotel HUP.
 
On the plus side, they’re running out of reasons to keep me here! The only thing left that could potentially cause a snag is that I need a dressing change tomorrow. I’ll be having home health nurses come out regularly to take care of the wound vac, but they aren’t available until Saturday, and I shouldn’t go that long between dressing changes. So we’re planning on a dressing change tomorrow morning before I’m discharged. This shouldn’t be a problem, but as we’ve already seen, you never know how things will go around here.
 
Hopefully, HOPEFULLY, tomorrow will be snag free, and I will finally be able to go HOME!

Still in the hospital

Well, I’m still in the hospital.
 
They didn’t get the wound vac on until Monday afternoon, which meant it was too late for me to have a visit from home infusion. And then the doctors who did the wound vac didn’t put in the right paperwork, so it took until today to get things set up with the home care company that will be taking care of it (which, by the way, is DIFFERENT from the company who will be responsible for my IV infusions!). AND ALSO my doctor ordered a test to see if I need an IVIG infusion to boost my antibodies and help me fight off this infection, and they still haven’t gotten the results back. So right now we’re planning on discharging me tomorrow, but we also planned on discharging me yesterday and today, so I’m not holding my breath.
 
I’ve actually been pretty out of it the last couple days. Unlike what they initially told me, getting the wound vac HURT. To put it on they first took out the gauze that was packing the wound, and then packed it with a special sponge instead, which was painful by itself. Then they put the wound vac hose over that and secured it with a dressing for a tight seal. And then they turned the wound vac on, which hurt some more. The first day they put it on I ended up taking both oxycodone and Dilaudid, so I was high as a kite and knocked out for the night. I did better today, until they had to change the dressing because my skin was reacting to the adhesive. So that meant taking out the sponge, putting in a new one, and hooking the vac back up –  which was, once again, painful. Today I was able to get by with just oxycodone, but that pretty much left me in a stupor all afternoon. Apparently I’ll be getting dressing changes every other day when I get home, so I’m definitely not looking forward to that. It’s currently unclear how long the vac will be on, since they just have to see how healing progresses. Right now I’m continuously chained to an IV pole, but fortunately the home machine comes with a carry case, so that’ll be a little easier.
 
So now I’m once again dependent on the home infusion company’s schedule to determine whether I can go home tomorrow. They need to know if I’m being discharged by 11am so they can get supplies out to my home for a 2pm nursing visit. Depending on when this last test result comes back, whether or not I need an infusion, and how quickly they can do the infusion if I need it, I MIGHT make it home tomorrow. But if we don’t have an answer by 11am, discharge will be pushed off yet another day. Here’s hoping the last pieces fall into place SOON!

5 star service

One of the reasons I like being on my usual hospital unit is because I get to see nurses I’ve known for years. Now that my hospitalizations are far less frequent I don’t know the nursing staff nearly as well as I used to, but there are still some long timers here who know me from before transplant. One of those nurses is Tim. Tim was actually working the day I got my transplant and escorted me down to pre-op. He is a fantastic nurse in so many ways, but today he revealed a new talent! While I was washing up in the bathroom, he took the time to turn a bunch of hospital towels into towel art!! I came out to an unexpected and adorable elephant and swan decorating my room, as if I was in a fancy hotel instead of a hospital! Where else can you get such 5 star service? I love my nurses!

Recovery

Thankfully surgery went well! Much to my surprise my surgeon actually found and removed the suture that could be the source of these infections, so that was great news! I felt pretty rough immediately afterwards, but one dose of oxycodone later I was MUCH better. Things went pretty well most of the day on Friday until they had to mess with the wound. This time they did not stitch it up and instead packed it with gauze, so it was uncomfortable when they unpacked and replaced the gauze. I’ve also been getting eardrops for my ongoing ear issues, which requires laying flat on my side for a while so the drops can go through the ear tube and into my inner ear. Fortunately I don’t have to lay on my surgical site, but even laying on the other side tugs on and exacerbates things. So I’ve been taking oxycodone to deal with that, which means I’ve been sleeping A LOT. Which is one way to pass the time here.
 
The current plan is to put a wound VAC (Vacuum Assisted Closure) on the surgical site, likely on Monday. Apparently that’s a special dressing that’s attached to a pump, which removes pressure from the wound. This helps pull fluid from the wound, pulls the edges of the wound together, and promotes tissue growth to help it close. I’ve never had a wound VAC before, but it’s not supposed to hurt, and I’m able to go home with it. They have different size pumps, some which need to be attached to an IV pole, and some which can be carried around in your pocket. I’m obviously hoping for pocket sized, but I won’t know until it gets here.
 
The other big news is that they found more antibiotics for me! They actually found THREE antibiotics aside from Tobramycin, which is much better than last time! I was actually pretty worried about whether they would find more antibiotics, so that was a HUGE relief. They started me on one before surgery, but it turned out the homecare company couldn’t accommodate that one, so they switched me to another one. And in the end they decided that since my surgeon was able to clean things out so well, I only need one antibiotic this time. The schedule is a little annoying because each dose needs to run for 3 hours, so 3 times a day I’m chained to an IV pole for a while. But I’ve been through way worse infusion schedules that hardly allowed for any sleep, so I’ll take 3 time a day!
 
Now that surgery is done and my antibiotic is settled, we’re just waiting on the wound VAC. Then I’ll be able to finish up however long they want me on the wound VAC and complete the remainder of my 2 week course of IV antibiotics at home. I already met with a nurse from the home infusion company, and they’re ready to go as soon as my team approves discharge. The only catch is that they can only come out to get me started during my afternoon dose, since they can’t really send out a nurse at 6am or 10pm. If my team isn’t ready to discharge me early enough to get home for a 2pm dose, we have to wait until the next day. I highly doubt they’ll be able to pull everything together for a Monday discharge, but hopefully Tuesday will be the day!

The plan of attack

We’re finally getting somewhere!
 
There was some confusion and communication mix-ups trying to coordinate between 2 surgeons, but in the end I’m scheduled for surgery with just my transplant surgeon tomorrow morning. He thinks that there’s a suture from transplant in my chest that has been harboring infection and allowing it to resurface, so he’s going to clean out the infected tissue and try to find and remove the suture. The last time I had these abscesses they also looked for a suture but couldn’t find it, so he plans to go deeper this time. Though I’ll be getting general anesthesia, he expects it to be a quick and easy surgery. And at least this time I’m only getting one side opened up, unlike last time when they had to open up both sides. Hopefully recovery will be a little easier this time.
 
One somewhat alarming thing is that on the MRI they saw a little bit of something starting on the other side too. They didn’t see enough to merit going in surgically, however. The current hope is that if an infection has also begun on the other side, the antibiotics I’ll be receiving will be enough to take care of it. The bad news is that susceptibility testing shows that my current infection is a multi-resistant monster like I had last time, so there aren’t many antibiotic options available. So far they have identified one antibiotic, which I started taking tonight. But they really want me on 2 antibiotics simultaneously, so they’re doing extended susceptibility testing in the hopes of finding other options. Right now the only other option available is Tobramycin, which I refuse to take. Tobramycin has already given me permanent (but thankfully mild) tinnitus, and the last time I attempted to take IV Tobramycin the ringing got louder within just a few days. It’s pretty clear that if I did a full 2 week course of IV Tobramycin, the ringing would become unbearable. Hopefully the extended testing will find at least one more antibiotic that I can use without terrible side effects.
 
We do still have another trick up our sleeve though. My transplant doctor has already been in touch with the bacteriophage (aka phage) therapy program at Yale. This is an experimental treatment that is not widely available in the United States. Fortunately for me, Yale has a phage therapy program specifically for CF patients with pseudomonas. Bacteriophages are a type of virus that attack bacteria without causing harm to humans. The catch is that each bacteriophage will only attack a specific bacteria, so they must be grown tailor made to the infection you’re trying to treat, which takes months. The current plan is to treat my infection immediately with surgery and antibiotics, submit a sample to Yale to develop phages for me, and then hit the infection again with phage therapy in a few months to hopefully eradicate it once and for all.
 
Right now my focus is on getting and recovering from surgery, and the impending course of antibiotics. It looks like I’ll be in the hospital through the weekend, and they’re tentatively talking about discharging me next week. It’s not fun being stuck in the hospital, and I’m definitely not looking forward to going through multiple rounds of treatment, but I’m grateful that I at least have some options available. Hopefully surgery will go smoothly and the recovery will be quick, and they’ll find one more great antibiotic for me soon!

The usual suspect

And to no one’s surprise, Lump is infected with… Pseudomonas.
 
That brings us one step closer to coming up with a treatment plan, but we’re still waiting for some important test results. Specifically, we’re waiting for susceptibility results, which will tell us which antibiotics can be used to treat it. Recently when I cultured Pseudomonas in my lungs, we were surprised to find it was less resistant than usual and was actually susceptible to multiple antibiotics. I have a hunch, however, that the current infection is leftover from the last time I had abscesses in my incisions, and that particular Pseudomonas was extremely resistant and had very limited treatment options. The susceptibility results are critical to determining what kind of treatment I’ll be getting, and we can’t really move forward without them. I’m hopeful that MAYBE they’ll come through tomorrow and we can get this show on the road.
 
Today’s adventure was getting an MRI to determine whether or not the infection has gotten into my bones. I had an MRI a few years ago the last time I had abscesses, but I had forgotten how unpleasant it was. I’m not usually claustrophobic, but being shoved into that little tube definitely had me a bit freaked out. It was also startlingly loud, and took way longer than I anticipated. All in all I spent around a half an hour in the machine, though I did request a brief break in the middle. And for some of the scans I had to repeatedly hold my breath for 20-30 seconds at a time, which was difficult. All in all it was NOT a fun experience! But thankfully it’s over, and hopefully I won’t have to get another for a long time, if ever!
 
On the IV front, unfortunately IV #3 didn’t even last a day. My team advocated very strongly for me to get a longer lasting type of IV called a PICC line, but apparently Interventional Radiology and the IV team are extremely stingy about them. Instead, the IV team put in an ultrasound guided IV, which THANKFULLY has actually lasted for over a day and is still going strong! And even more thankfully, tonight Interventional Radiology FINALLY told me that I could get a PICC line, so that should be happening sometime tomorrow. I’m really looking forward to NOT being a pincushion anymore!
 
On a lighter note, as is tradition, I have decorated my room with the latest batch of Pole People! A few staff members remembered them from previous hospitalizations, and a bunch of new-to-me staff have been pleasantly surprised by them. I hope you all enjoy them too!

Lump drama

Lump did not, in fact, keep it together.

Over the last week I've been both concerned about and frustrated by Lump. I had a few consecutive days where it was constantly itchy and/or painful, which was wearing me down. I still had so many weeks to go until my scheduled appointments, and I was not looking forward to being perpetually uncomfortable for at least month. Thankfully it eased off for a few days, but then it started acting up again on Friday. By Friday night it was swollen and red and looked particularly angry.

Late Friday night I woke up drenched, and immediately knew what had happened. Sure enough, Lump had burst and released a shocking amount of pus. I didn’t feel capable of dealing with anything at 3am, so I just cleaned up and went back to bed and decided it could be a tomorrow problem. In the morning it was still oozing an appalling amount of pus, so we reached out to my doctor, who fortunately had given me his cell phone for emergencies. Given the sudden escalation in symptoms and obvious signs of infection, he decided we couldn’t wait for my scheduled appointments, and it was time to be admitted to the hospital to fast track things and start IV antibiotics. So off to HUP we went!

The big advantage of being in the hospital is that I don't have to sit around waiting for appointments. They sent me for an updated CT scan, and took cultures of the disgustingness that was draining out of me so they can finally identify the infection and determine the best course of treatment. They also got me started on both an IV and oral antibiotic that they hope will be effective against whatever I have. They’re currently debating whether or not I need an MRI, and working on scheduling surgery to clean out the infection and finally evict Lump. They MIGHT manage to get me in by Friday, but that's unclear because they’re trying to have both my transplant surgeon and a plastic surgeon be involved in the procedure, so that’s 2 busy schedules to coordinate. In any event, I will definitely be getting things taken care of MUCH faster than originally planned!

Unfortunately, my veins have been particularly terrible thus far. My first IV went bad in less than 2 hours, before they even had a chance to run anything though it. My second IV did better, but still didn’t even last a day. And both of those IVs took 2 tries each to get in. Thankfully, IV #3 went in on the first try. Here’s hoping it has more staying power than the first 2 did!

So right now I'm in the wait and see part of this hospital stay. Waiting to get the results back from my cultures and determine a treatment plan, and waiting to see when they can schedule surgery. But at least now the wait will be MUCH shorter than it would’ve been as an outpatient!

Medically busy again!

It’s been a medically busy month!
 
I started things off with a CT scan. Almost 2 months ago I noticed a lump on one of my transplant incisions near where I had an abscess a few years ago. It wasn’t visible and was barely noticeable, but I was obviously concerned due to my history. The CT scan fortunately didn’t show any signs of abscess or infection, and my doctor reassured me that it was just a suture granuloma, which happens when the immune system reacts to a foreign object (in this case, a leftover suture from my transplant) by trying to form a barrier around it and wall it off from the rest of the body. My doctor gave me the option to meet with a plastic surgeon and have it surgically removed, but I decided not to pursue that unless it became more of a bother. Well, barely a week later it started bothering. Not only had it grown, but it had become slightly red and sore, which are both bad signs. I’m now scheduled for an MRI in mid-December, and will be having a plastic surgery consult afterwards. Let’s just hope Lump can keep it together until then and I don’t end up rushing to the ER with more significant symptoms the way I did the last time I dealt with something like this.
 
A week after my CT scan I got to have a colonoscopy. Not only have I reached colonoscopy age, but both CF and transplant put me at higher risk for colorectal cancer. Unfortunately for me, the last time I had a colonoscopy a few years ago the prep didn’t fully clear me thanks to my stupid stubborn CF gut. So this time I got to do the extended prep, which meant 2 days straight of clear liquid diet plus a ridiculous amount of laxatives. And guess what? After all that, I wasn’t clear AGAIN! What they were able to see looked fine, but instead of waiting 5 years for my next one, I have to do it again in 2 years. And who knows what kind of godawful prep I’ll have to go through next time! I’m already dreading it!
 
The week after that I had my last scheduled appointment with Dr. Courtwright, my transplant doctor, before he moves across the country. He’s not actually leaving until December 13^th though, so if anything goes wrong before then he’ll still be my doctor. And with the current Lump situation, I wouldn’t be surprised if I see him again before he leaves!
 
Last week I had my annual appointment with my ENT. Though a recent CT scan showed that my sinuses are blocked, he actually didn’t think that I would get much benefit from sinus surgery. One the one hand I’m glad to not have to go through an unpleasant surgery, but I’m also disappointed that there’s basically no chance of ever getting my sense of smell back. It disappeared completely again several months ago, and though there was no guarantee that I would get it back even with surgery, I had some hope because I unexpectedly got it back after my last sinus surgery. But no surgery unfortunately means no chance of regaining my sense of smell. I can definitely live without it, but I do miss it sometimes. My ENT also looked at the ear that has been giving me problems and saw a lot of drainage from the ear tube. He gave me antibiotic and steroid ear drops, and sent off a sample to see what infection I have brewing in there. And OF COURSE, as always, it’s my nemesis pseudomonas! My ENT is currently consulting with both my CF team and with colleagues who specialize in ears to come up with a treatment plan. I actually was pleasantly surprised that he dealt with my ear at all, as previously he referred me to another ENT since he specializes in sinuses and not ears. Hopefully he’ll be able to come up with a plan that finally deals with this ear issue once and for all!
 
And that brings us to today, and my consult with an oral surgeon. A couple months ago I went to the dentist for the first time in years. Between transplant and Covid, dental appointments kind of fell by the wayside, but fortunately I have good teeth so I could mostly get away with it. For years I said that G-d balanced things out for me, and gave me good eyes and good teeth to make up for all my internal organs being trash. I never needed glasses, or braces, or any other significant dental work. In fact, I never even had so much as a cavity! Well apparently getting new lungs voided the contract, because earlier this year I finally got glasses, and a couple months ago they found the first cavity of my entire life. Unfortunately, it’s close to the nerve, so they have to either extract the tooth or do a root canal. On the plus side, it’s in a wisdom tooth which is fully in, so extracting it isn’t a big deal. My dentist wasn’t comfortable with the angle of the tooth, however, so she referred me to an oral surgeon. The oral surgeon said it should be easy to extract with just local anesthetic, so I have an extraction appointment scheduled in 2 weeks. Here’s hoping it goes smoothly!
 
Overall my medical needs have been keeping me pretty busy lately, with still more to come! Hopefully I can get these various issues taken care of quickly and things will settle down soon!

The end of an era

It’s the end of an era.

A week ago I had my last scheduled appointment with Dr. Courtwright, who has been my transplant doctor for the last 5 and a half years. I first met him a few years before my transplant during one of my many hospital admissions. The outpatient lung transplant doctors are also part of the inpatient Advanced Lung Disease team, so they all take turns being the attending doctor on the inpatient unit. I was always happy when Dr. Courtwright was my attending. Not only is he extremely skilled and knowledgeable, but he is also friendly, supportive, and has a good sense of humor. When I was being worked up for transplant, it was actually Dr. Courtwright who told me that I could choose anyone from the team to be my outpatient doctor after transplant. As soon as he asked, I immediately chose him!

Dr. Courtwright happened to be working on the inpatient unit the week of my transplant. A couple days beforehand he told me that I was at the top of the list and that he thought I might even be transplanted that weekend. And he was right! We actually had a funny moment with him after I went down to pre-op. I was brought down first, and Katherine and my mom came down shortly afterwards. It was a Sunday, however, which meant most of the operating area was closed. When they tried to take an elevator to the pre-op area, the elevator wouldn’t open! They had to go back up to the floor and find a nurse with an access card to let them in. Then when they finally got to the pre-op area, they couldn’t find me! Everything was closed and dark since it was the weekend. They were wandering around and couldn’t find anyone to direct them, when somehow they ran into Dr. Courtwright, who was also looking for me! The 3 of them video chatted with me asking where I was, and I showed them the area I was in, which gave Dr. Courtwright enough information to lead them to the one open pre-op area where I had been taken. It was a chaotic but funny interlude during a stressful time!

Over the last 5 and a half years I have had countless appointments with Dr. Courtwright. He has guided me through various complications both big and small. He has always been available for all my questions and concerns, and never once made me feel like anything other than a top priority. He is a very special doctor, and I’ve been so blessed to have him! Sadly for me and the entire transplant team, he and his family are relocating to Salt Lake City. I trust the lung transplant team at Penn and am sure that my new doctor will be great, but nobody will be able to replace Dr. Courtwright. Having a good relationship with your doctor is HUGE when you have a chronic illness, and I’ve been so lucky to have someone as phenomenal as Dr. Courtwright in charge of my care for so long. I will truly miss him, and I wish him the best of luck in everything wherever he goes!

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!