Eddie vs the G@#$%& Pneumonia

Eddie’s status: The lung situation is still no bueno. 

• Pneumonia doesn’t seem to be improving, possibly it’s gotten worse 
  
• Pleural effusion remains
  
• There’s now an air bubble in his lung to contend with 
  
• Eddie is currently undergoing daily granulocyte transfusions to help fight the fungal infection 

I drafted a lengthy update over the weekend, but lost it when the tumblr editor crashed. I took that as a sign that I should just cut to the chase.

The short story is that based on his last CT chest scans, Eddie’s fungal pneumonia does not seem to be getting any better. 

According to the doctors, the pneumonia in his right lung has gotten more dense. Also, shortly after the thoracentesis, a procedure in which they drained the pleural effusion, more fluids filled the chest cavity back up. On top of that, there now appears to be an air bubble. They suspect some air may have gotten into the lung after the second thoracentesis. Oh yeah, did I mention that? Eddie had his lung tapped twice. 

So what’s the plan now?   

The doctors switched Eddie to the strongest anti fungal available, Amphotericin. This drug is known to put a lot of stress on the kidneys, so Eddie is receiving extra fluids and is being monitored closely. 

In addition to the new anti-fungal, the doctors went ahead and set Eddie up with daily transfusions of granulocytes, a type of white blood cell. 

White blood cells to the rescue!

Granulocyte transfusions are not very common because 1) it’s hard to get donors; donation and transfusions all need to happen in the same day due to the short half-life of white blood cells and 2) it comes with a host of side effects including fever and shortness of breath. 

The doctors believe that given the fact that Eddie has no neutrophils and that his pneumonia doesn’t appear to be getting any better, the potential benefits of the granulocyte transfusions outweighs the risks. 

I’ve come to think of granulocytes transfusions like a troop of mercenary soldiers, recruited to help Eddie attack a fearsome foe. As mercenaries, they are  unlikely to stick around for very long, but they’ll go in and do the job that they were hired to do. One of the drawbacks of hiring a bunch of mercenaries, though, is that they tend to be a lawless lot of fighters, not overly concerned about the havoc they might wreak. 

Granulocytes, those tough so-and-sos, take down anything that gets in their way. 

I’m afraid to say that the mercenaries are running amok in Eddie’s body.
Reactions to granulocyte infusions vary between patients. Eddie, unfortunately, is having a rough run. The granulocyte transfusions not only bring about high fevers, but also exacerbate his already terrible cough, causing him to vomit when he coughs. This is what’s known as post-tussive emesis, a fancy term for one of the most awful symptoms ever. 

So, far nothing they’ve tried has helped subdue the cough.   

Depending on the availability of donors and Eddie’s ability to withstand all the side effects, the doctors plan to transfuse Eddie with granulocytes for up to 7 days. 

Today makes day 3.   

Oh boy. A lot more steps to go. 

Eddie’s trying to fight through all the pain ad exhaustion, but sometimes it’s hard. Really, really hard.  

We’re are all trying to steel ourselves and stay focused on the bigger picture, the road to BMT transplant, but sometimes it’s hard. Really, really hard.   

Hard doesn’t mean it can’t be overcome. It’s just…hard. 

I probably won’t get a chance to write another update until after Eddie gets through these granulocyte transfusions. Please know that we’re holding strong and are confident that we’ll get over this hump. 

Strong like a bull (or Celine Dion). 

I’d like to end this post with an expression of deep gratitude to the generous strangers who donate their granulocytes. These people have to come in on short notice and receive a needle full of growth factors before each donation, and if they’re willing, may go to the Blood Bank and donate as often as three times in a week. 

I’ve donated blood a number of times never fully understanding what a significant impact such a singular act can have. I certainly will never again take that opportunity to help someone in need for granted. 

To all you kind souls who have shared or will share a part of yourselves with Eddie so that he can fight his way back to health, this gif is for you.

Eddie vs Pleural Fluids & Staphylococcus

Eddie’s status: back in the hospital; admitted for a high fever Friday evening; fevers seem to be due to a bacterial infection in his blood, an infection he is currently being treated for; meanwhile, docs are trying to sort out his lung situation

It’s becoming harder to write updates because things are getting a bit complicated –  not necessarily worse, just complicated. 

This post is going to be pretty lengthy so you’ll want to pull up a chair and make sure you’re comfortable. :) 

Here we go…

I’ll first begin with the newest development. After exactly a week out of the hospital, Eddie spiked a 101.6 degree fever that instantly earned him a trip to the ER. If you’re neutropenic like Eddie is, you need to get on top of the fever stat!

Initially, the docs theorized that the fevers were due to the infusion of platelets he had received earlier that day. It is not uncommon for people to spike a fever or break out into hives after an infusion of blood products. However, they couldn’t be sure so they had to they quickly set him up on some strong antibiotics. 

Per protocol, the ER docs had Eddie start on a trio of broad antibiotics: aztreonam, ciprofloxacin, and vancomycin. 

Vancomycin. Eh, wait a minute, doctor.

Eddie’s been on vancomycin many a-times now, but we associate it with his nausea-ridden days, so we can’t help but feel a little nervous whenever he’s back on the strong antibiotic. 

This time our nervousness prove to be founded…

We spoke to the ER pharmacist about our concern that it was vancomycin that had exacerbated Eddie’s nausea. She reassured us that nausea is not an associated side effect of the drug. Thus, they went ahead and gave him a loading dose of vancomycin through IV. About an hour into the infusion, he broke out into a faint pink rash on his upper body. 

Another drug rash? Eddie was having none of that!

After what we experienced with the Zosyn drug rash, we immediately alerted the ER staff to the rash that was breaking out on Eddie’s upper body. They quickly paused the Vanco. 

Later that evening (or I guess, technically, early morning), once Eddie was admitted into the Oncology unit, they determined that Eddie had experienced a known reaction to vancomycin called Red Man Syndrome. Given this new information, they decided to try the vancomycin, only this time at a much slower rate of infusion. 

What do you think happened? 

Yep. You guessed it. More rash.

We told you we don’t like that vancomycin. 

The doctor reiterated the fact that the rash was a reaction to the vancomycin, not an allergy. However, given Eddie’s state, they decided to pause and find other alternatives. 

Some overnight blood work revealed that Eddie has a staphylococcal infection in his bloodstream, a type of skin staph. The good news is that this type of infection is quite easy to treat with antibiotics. In fact, by my counts, this is Eddie’s third time getting this particular type of infection since being diagnosed. 

In the past, Eddie was given vancomycin to treat the infection. This time, however, they decided to go with a combo of two other antibiotics called cefepime and daptomycin. So far, Eddie continues to spike fevers, but we probably need to give the antibiotics at least another day before we start seeing a difference. Meanwhile, the doctors have ordered susceptibility tests to figure out which particular meds get at the bacterial infection best. 

And then, there’s the pneumonia. 

If you’ve been following Eddie’s Aplastic Anemia saga, you’ll recall that in addition to this new infection, Eddie’s been grappling with a fungal pneumonia for the past three weeks, a pneumonia that is preventing Eddie from starting the BMT transplant process. 

Prior to this recent hospitalization, we met earlier this week with the doctors at the SCCA, and we learned that the status of his pneumonia is unclear due to the accumulation of more fluids in his pleural cavity. 

I created this graphic to help me illustrate the situation in his lungs. Please do not let the sophistication and the anatomical accuracy of my drawing fool you. This is simply my interpretation of what we the doctors explained to us. Nothing is drawn to scale. 

On Tuesday (4.5), Eddie underwent a CT scan of his chest. As I mentioned above, the CT image showed that more fluids had accumulated in the pleural cavity and was obstructing the view of the pneumonia. The doctors had no way of knowing if the pneumonia in Eddie’s right lung was improving. 

On top of that, they also noticed more “ground class opacification” (yes, that’s a technical term) on his left lung. The “ground class” has apparently been seen on previous CT images so the Infectious Disease doctors don’t seem to be overly concerned about the left lung. They do however, need to know what’s happening in the right lung, so their first course of action was to drain the effusion in his right lung through a procedure called a thoracentesis.  

Eddie was scheduled to undergo the thoracentesis this coming Monday as an outpatient at the UWMC, but thanks to the unexpected skin staph infection, he was able to get the procedure done this weekend. The one perk of being hospitalized. The doctors come to YOU!

The long and the short of it is that the doctor drained about a liter of fluid from Eddie’s right lung plus a few syringes full of the fluid for lab testing. Eddie will undergo a CT scan at some point (probably tomorrow), but that has yet to be scheduled. We won’t know how the pneumonia is looking until that scan happens. 

The good news is that the terrible cough that has been keeping Eddie up for the past week has gotten a little bit better. Thanks to the draining, those potent cough syrups they keep prescribing are actually making some impact. That means that Eddie’s been able to manage a couple of hours here and there, more than the 15-minute intervals of sleep he’s been subsisting on.  

Also, today he walked over a mile around the hospital wing without feeling short of breath. That would have a been a near miracle just a day a go. 

I think it’s too soon to say that Eddie’s pneumonia is getting better, but given these small feats, I’m cautiously optimistic that the situation in his lungs may be better under control. 

To top it all off, he managed to eat half of a crunchy Supreme Taco. 

From apple sauce to Taco Bell. Eddie sure likes to take risks!

All in all, it’s been a weekend of tiny feats! Keep your fingers crossed that we continue this positive streak. 

Mom, Dad, Anna -- I love you.

I have a lot of anger inside of me right now. This disease has taken it’s toll physically, but even worse, the emotional impact has really started to get to me. This post started out much differently. All I wanted to do was spew hate and discontent for being placed in this awful situation and putting my family through so much – but I decided to pull back. I deleted the paragraphs full of expletives and thought to myself, this isn’t the time for negativity, even though at times that’s all I feel. Yes, my body has been ravaged, but I’m still somehow standing. Yes, the pain I’ve experienced has been the worst I’ve ever had to endure, but I’m still somehow standing. Yes, this is the most scared I’ve ever been in my entire life, but I’m still somehow standing.

Hyper pigmented skin, stick figure arms, bruised and scarred all over, distended belly and swollen feet/ankles due to edema, skin rash… and yet I’m still standing.

I’m still standing because of three very precious individuals.

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MOM

In Korean culture, kids have a special relationship with their mothers. This is typically because Korean men (fathers) are usually the sole breadwinners, and so it’s on Mom to raise the kids. My dad worked a lot when I was a child, so I didn’t see him as much. Accordingly, my mother did most of the child rearing during my elementary years. The twist is, my mom also worked full time to help support the family, while raising me. It couldn’t have been easy, and she’ll try to convince you that she made a lot of mistakes as a mother. She had me when she was very young – and the so called mistakes are more than understandable given she was barely in her early twenties when we emigrated to the United States. As an immigrant with limited English skills, my mom worked as a housekeeper for a few different motels and inns. Basically earning minimum wage, cleaning up after people’s mess. It was physical work. I remember as a child, I didn’t get “summer vacations” so I’d follow my mom to work quite often since we couldn’t afford a babysitter. I’d spend many hours in the laundry room of the inn my mom worked at, eating snacks and trying to listen to the TV over the loud noise of the industrial laundry machines. Even when I smell fabric softener today, I’m reminded of those days – waiting for my mom to finish cleaning the rooms so we could go home in the afternoon. Sometimes, as a treat, my mom would be able to let me into an empty hotel room so I could watch cable TV without all the laundry machine noise. While all my friends were at camp or Disneyland for the summer, I followed my mom to work, and yet these are some of the fondest memories I have as a child. My mom cleaned rooms for a living, but was always proud of her work. For that I love her immensely.

My mom continues to do physical work, but at a hospital. Pushing around a cart just like back in the day. She says she likes it, but I feel bad because I know her body can’t keep it up forever.

Right now she is on leave from work to take care of me and accompany me to my visits to the clinic every day. A month or two back, I remember holding my mom’s hand at the clinic and noticing how rough and cracked her skin was and how swollen her hands looked. I started to tear up. She sacrificed a lot of her youth to give me a good life, including her once pretty hands. Years of pushing carts and vacuum cleaners, but happy to have a job. This is true sacrifice. This is a good mom. The best mom. I love you mom.

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DAD

My dad’s not a large man, but he’ll always be seven feet tall in my eyes, towering over me as I hold onto his leg as a little boy. I’ve always looked up to my father and told myself – If I grow up to be half the man he is, I’ll be okay.

If you ever meet my dad, you’ll notice he’s a man of few words. His side of the family must live by the mantra: actions speak louder than words. As I mentioned, my dad worked a lot when I was growing up. For the first few years we lived in the US, I remember he’d come home from work to eat dinner and then head back to the dental lab until the early morning. He basically worked 24/7. No weekends. No vacations. He did what he had to to do to put food on the table and a roof over our heads. I of course missed seeing him. What boy doesn’t want to spend time with his father? But I never once resented how much he worked. It was so painfully evident that he would have rather been home and was making a huge sacrifice for me and my mom. He never made it to many of my little league baseball games, but I remember as a kid, I had to have this certain glove and certain baseball bat. Both were not cheap. He didn’t flinch to buy me whatever I wanted. Not because he felt guilty, but because he wanted me to have everything he couldn’t have as a child (my father grew up incredibly poor). 

Looking back, I know I was spoiled as an only child – but if one good thing came from being spoiled, it’s having a clear picture of what a strong work ethic is. My father has the strongest work ethic of anyone I’ve ever met and I hope to emulate that. My dad worked hard to give me all the opportunities he never had, like attending college and grad school. I will follow his example and do the same for my kids someday.

My dad’s my hero. He’s Korean MacGyver (he can fix anything). He has a tough love approach to my journey to recovery which can be hard at times, but necessary I’m sure. Thank you dad, for your mentorship, your unrelenting example of what it means to be an honorable person, and for the sacrifices you continue to make for our family. I love you dad. 

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ANNA

It’s actually hard for me to start writing this without having hot tears streaming down my face. Anna. The love of my life. Where do I even begin.

If my parents are the ones holding my up by each side, it’s Anna who is gently pushing me forward to get better. 

When I first started dating Anna, I didn’t know what to make of her. I didn’t know someone so beautiful, warm-hearted, smart, and funny could exist in the world – and yet here she was. For whatever reason, giving me the time of day. 

I don’t know what she sees in me, but I stopped questioning her reasons for loving me a long time ago. What is clear to me is that her love is unconditional. Something I’ve never experienced before from anyone aside from my parents. For those of you who have someone like this in your life, I’m sure you’ll agree – the feeling is inexplicable. Having someone love you and pick you up when you’ve hit rock bottom.

I never really believed in soulmates until I met Anna. I don’t even know if I told her this, but I fell in love with her the first day we met – and my feelings for her grow stronger each day. She is absolutely my soulmate. I distinctly remember early on in our relationship, vowing to myself that I would spend the rest of my life trying to make her happy and protecting her from all the bad things in the world. Unfortunately, I don’t know think I’m living up to my promise. Now that I’m sick, it’s Anna who has stepped up and taken care of me along with my parents. She is a gift sent from heaven. My mom and I say this almost daily. Without her, I don’t know where my family and I would be right now. 

I’m writing the least about Anna because there are too many precious memories that I want to selfishly keep to myself at this moment. I hold onto these and think about them when I’m at my lowest and darkest.

It’s hard not to feel bitter sometimes. To be missing out on the life we once had before I got sick – but as she’ll tell me over and over, this is temporary. We’ll get back there soon and we’ll appreciate life even more. She’s right. 

I’ve learned so much from Anna in the relatively short time I’ve known her, and she makes me want to be a better person every day. I hope I can one day give her everything she deserves in life. She’s my everything and I adore her to the moon and back. I love you Anna. More than you’ll ever know.

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Cherish the special people in your life. You can never tell them too often how much you appreciate and love them for all that they do for you.

Cheers,
Eddie

Still in the fight.

Update: Eddie vs Pneumonia and a Bunch of Other Things

Eddie’s status: He’s out of the hospital and back at home; fevers are gone; drug rash is going away; edema is subsiding; very worn down but focused on getting better

Sorry for the lag in updates. The past three weeks have been quite eventful. So much has happened; it’s a bit hard to figure out where to begin. 

After 17 days in the hospital, Eddie’s primary care team cleared him to go home.  (He was discharged on April 1st)

He hasn’t fully recovered from the pneumonia, but he’s doing better. Here’s a follow up to my last post about his pneumonia and his 99 other problems:

1) Pneumonia. Chest x-rays still show signs of pneumonia, but according to the docs, it can take awhile for the chest x-rays to clear. Based on the fact that the pneumonia doesn’t seem to be spreading and that Eddie is no longer having fevers, the doctors decided to send Eddie home. 

2) Drug rash. So, Zosyn, the presumed culprit of Eddie’s drug rash has now been added to Eddie’s list of allergies. Penicillins are important, but that particular drug really did not suit Eddie. Thankfully, the drug rash seems to be on it’s way out. Now Eddie just has to contend with lots of skin peeling in all the areas the drug rash covered – basically everything from his neck down. Poor Eddie. Molting is no fun. 

3) Edema. Man, after the pneumonia, I think the swelling from all the excess fluids in Eddie’s body was probably the worst part of the past couple of weeks for Eddie. The swelling in his legs in particular caused him a lot of pain. He managed to get a lot of the swelling down through a combo of diuretics, keeping his legs elevated, walking, and a pair of compression socks. The socks did a good job of reducing the swelling, but it also left Eddie’s legs bruised and all purpley. This is one of the great ironies of Eddie’s life right now. The very things meant to help him with an ailment, come with their own side effects, requiring additional treatment. 

4) A second infection in his lungs? The doctors did not find any signs of another infection. We’re still not certain what the deal is with those spots they noticed on his left lung, but the docs don’t seem to be overly concerned. They said it did not look like the pneumonia had spread. We’ve asked repeatedly about these spots, but I get the feeling we’re just not asking the right questions, because it’s still not clear to use what the deal is with those spots. It can get a little frustrating at times, but I think for now, we’ll just take comfort in the fact that the spots on his left lung don’t pose a problem right now.

5) Deconditioning. 2.5 weeks in the weeks in the hospital has left Eddie feeling extremely fatigued, weak, and overall really crummy.  Between regular vital checks throughout the day, a revolving door of doctors and nurses, a constant stream of transfusions, coughing, pain, a steady regimen of diuretics that make him pee frequently, and two Code Blue events, it’s been nearly impossible for Eddie to get more than two consecutive hours of sleep while in the hospital. Please don’t mistake this for complaining. All of the aforementioned activities are essential to Eddie getting better. It’s just that a major consequence of all of this care was that Eddie took a major hit in both morale and sleep. 

As mentioned though, the good news is that Eddie’s back at home. Though he’s still grappling with a really bad cough, swelling in his legs, the aftermath of the drug rash (flaking skin + bumps all over his legs due to inflammation in his sweat glands), plus all the general fatigue and lack of appetite, he can finally return to some sense of normalcy. Well, at least, what’s become the new normal. He can loll about in his own bed. Take a walk around the house. Pee without everyone knowing his business.  

Now Eddie needs to focus on getting transplant ready. What does that mean exactly? We’re still figuring that part out. The main thing though is for the Infectious Disease doctors over at the SCCA to determine that his pneumonia is “getting better.” He’ll undergo a CT scan of his chest this week, so hopefully we’ll have more information then.  Also, Eddie needs to focus on strengthening his body by taking lots of walks and eating solids so that he can get off of the TPN (i.e. nutrition in a bag).  

I can’t lie. These past few weeks have been rough on Eddie, probably the roughest he’s experienced thus far since being diagnosed with Aplastic Anemia. He’s still hanging tough though. On a positive note, he also discovered a few new things that make Aplastic Anemia life somewhat more tolerable. 

I will leave with you Eddie’s favorite things for Spring: 

1. Hermell Products Elevating Leg Rest

This leg rest is far superior to a stack of pillows if you’re trying to keep your swollen legs elevated above your heart. 

2. Uniqlo Airism Boxer Briefs

Eddie probably doesn’t appreciate me revealing what kind of underwear he’s rocking, but given how comfortable he says they are, I feel like you men out there need to know about these briefs by Uniqlo. Very breathable and no chafing. 

3. Ginger Delights

Eddie’s nausea has taken a back seat, but when it was running rampant and the nausea meds weren’t working/available, he found that these ginger pastilles really helped to keep the nausea at bay. I found these from Cost Plus. Good ol’ Cost Plus, a treasure trove of random things.