Just came across this link. Thank goodness we live in the Seattle area.
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aplastic anemia
Eddie’s status: Still in the hospital being treated for pneumonia. And a drug rash. And major swelling all over his body. And possibly another infection. :/
It’s been twelve days since Eddie was admitted to the hospital for pneumonia, and it’s hard to tell if he’s getting any better. I’m sorry to say that his already complicated situation has only gotten more complicated.
I know in my last post I celebrated the fact that Eddie’s nausea has subsided, but the nausea has since been replaced by some other setbacks.
Unfortunately, this is one of those posts where I get more real about Eddie’s condition. If you’re faint of heart, you should probably skip this one, and wait until I let you know that Eddie’s doing better.
Here’s what we know so far.
1) Eddie has pneumonia. If you’ll recall from my first post about Eddie’s pneumonia, his primary team of doctors initially believed the pneumonia to be the result of a bacterial infection and thus, treated him with a potent combination of Zosyn, a penicillin, and Vancomycin, an antibiotic. However, despite a few days on the drugs, Eddie continued to spike fevers. On top of that, the sharp pain in his right chest/back seemed to only worsen. This led the Oncology team to consult specialists from both Pulmonary (lungs) and Infectious Diseases. “If it isn’t an antibacterial infection, then what is it?” they wondered.
2) Eddie’s pneumonia is due to a fungal infection, caused by a common mold called Aspergillus. This species of mold is apparently everywhere. Most of us have aspirated this fungi at one time or another and it’s not a big deal because our immune systems can take care of it. However, when you have a compromised immune system like Eddie does, it’s a big deal. In fact, everything is a big deal when you have Aplastic Anemia. The fungal infection was discovered after Eddie underwent something called a bronchoscopy, a procedure in which they put a scope down his trachea in order to obtain a sample from Eddie’s lungs. The bronchoscopy almost didn’t happen due to some differing opinions amongst the 10+ doctors consulting on Eddie’s case. Thank goodness it happened though, because it revealed that his pneumonia was in fact a fungal infection, not bacterial as initially thought. As a result, they switched up Eddie’s meds to some very strong anti-fungal meds, one of which has some interesting side effects.
3) Eddie is seeing visions. One of the anti-fungals Eddie is on, voricanozole, is known to have some unique side effects, including “visual disturbances”, such as a sensitivity to light or a problem seeing colors. According to the doctors, it has also been known to cause very vivid dreams. In Eddie’s experience, he occasionally has these visions when he’s partially awake. Somewhat akin to lucid dreaming, he knows that what he is seeing is not actually happening. Eddie said that he once envisioned me and his mom walking down a road looking at a bunch of crafts and wares, like the stuff you’d see on Etsy. On a few occasions, he says that my hair looked purple. Apparently, I look pretty decent with purple hair.
4) Eddie has a gnarly drug rash. I don’t recommend that you google ‘drug rash’, but if you do, you’ll see that drug rashes look really scary. This rash is a frightening shade of pink and covers most of Eddie’s body, but is especially harsh around his appendages and belly. The doctors suspect that the penicilin, Zosyn is the cause of Eddie’s drug rash so they have since pulled him off the drug. Unfortunately, a drug rash can linger for a few weeks even after eliminating the offending drug. I also learned from one of the nurses that drug rashes can also sometimes lead to fevers. As if, Eddie didn’t already have enough reasons his body might spike a fever! The drug rash varies in it’s intensity, so it’s really hard to tell if it’s getting any better. In the meanwhile, the dermatologists prescribed Eddie with a lotion to help ease some of the irritation.
5) Eddie has some major edema, the medical term for swelling. Imagine your body covered in a bright, angry rash. Now, imagine that rash-covered body, swollen. Yeah. It’s very uncomfortable. There’s a lot of swelling going on right now in Eddie’s body. Currently as I write this, he has swelling in his face, his arms, his hands, his belly, his thighs, his legs, and his feet. Since being admitted to the ER, he’s gained around 25 pounds, most, if not all of which, comes from fluids.
From what I understand of what the doctors have told us, fluids have been accumulating excessively in Eddie’s tissues and muscles and not passing through his blood vessels as they should be. Consequently, in addition to swelling, this accumulation of fluid also contributes to Eddie’s low blood pressure. I could be wrong, but some of this fluid buildup may also be due to some kidney issues Eddie has had on account of all the heavy meds he’s been on since starting his treatment for Aplastic Anemia. For now, the doctors have instructed Eddie to keep his feet elevated (above his heart), wear compression socks, and go for walks to help alleviate some of the swelling.
6) Eddie has accumulated fluids in his pleural cavity, the area surrounding his lungs. Now, I’m not sure if the fluid accumulation in his chest cavity is related to the excess of fluids in the rest of his body, but recent X-rays have shown that there’s a lot of extra fluid around Eddie’s right lung, the one with pneumonia. A thick concentration of fluids in one area would indicate an infection in the pleural space. The good news is that the fluids are free-flowing. On the other hand, the doctors are not certain if these fluids are hindering the anti-fungals from getting at the pneumonia in his right lung. Right now the plan is to tightly monitor what’s going on in Eddie’s chest through regular X-rays as well as wait and see if his fevers go down.
7) Eddie may or may not have a respiratory or viral infection. A CT scan of Eddie’s face and neck revealed some new spots on Eddie’s left lung. The nature of these spots are still unknown, but the doctors are concerned that it might be a sign of another infection. I know. WTH! Can’t the universe cut a guy a break?!
The doctors suspect that the spots may be signs of a respiratory or viral infection because Eddie’s already on some super strong anti-fungals and antibiotics. It would be very “atypical” for him to acquire another fungal or bacterial infection.
Eddie took another series of chest X-rays this evening, so we’ll have to wait until tomorrow for the results.
Here’s a visual summary of what’s going on in Eddie’s lungs right now.
As you can imagine, Eddie has got a lot going on right now. He’s like the Jay-Z of infections right now - he’s got 99 problems but a normal immune system ain’t one.
We’re fortunate that Eddie is under the care of an extremely dedicated and smart group of nurses and doctors, all intent on helping Eddie get better. Unfortunately, his Aplastic Anemia, the condition underlying all of his current afflictions, makes “getting better” an incredibly complex challenge, rife with all sorts of unexpected obstacles.
The good news is that Eddie is not spiking as many fevers as he used to. The problem is, the fevers aren’t gone completely. Fevers are the number one sign that things are not right in his body.
I can’t say that Eddie has defeated his pneumonia yet, but the fight’s not over. It’s pretty remarkable how, despite everything that is ailing him, Eddie is pushing through the pain and trying to do whatever he can to strengthen his body. In fact, the doctors keep saying given all that he’s got going on, he’s looking ‘pretty well.’
I know Eddie’s condition sounds pretty dire right now, but we know that he will get better. He’s going to fight the pneumonia with everything he’s got! Things might get ugly, but he’ll end up on top.
So, with that, let me leave you with some of Eddie’s triumphs from the past couple of weeks.
Do you remember that incentive spirometer? Eddie reached up to 5.98 seconds! The Pulmonary doctor says that Eddie is one of the best he’s ever seen. (I, who am pneumonia free, tried it and barely got to 3 seconds.)
Eddie kicked nausea to the curb and managed to take in some solid food!
Lastly, Eddie turned another year older! Ever the gentleman, he humored us by posing with the world’s cheesiest birthday balloon.
Eddie’s status: Today Eddie ate a tangerine.
I’ll tell you why this is a big deal.
For the past month and half, Eddie has been plagued by nausea and a loss of appetite. It’s gotten to the point where he hasn’t able to tolerate anything more than periodic sips of apple juice and water. Even most of his meds, normally taken by mouth, had to be switched over to IV because he just couldn’t keep anything down.
The doctors suspect that Eddie’s gut issues are due to some GI bleeding and/or a side effect of all the heavy meds that Eddie has been on. Despite their best efforts, they could not figure out the exact cause of Eddie’s nausea or his severe loss of appetite. To be honest, we all kind of resigned ourselves to thinking that Eddie wouldn’t be back on solid foods until after his bone marrow transplant.
But, then, a surprising thing happened today.
I was eating some sliced apples this morning, and out of habit, I said to Eddie, “Mmm. These are really good. You want some?,” knowing that he would say no. To my surprise, he said, yes, he wanted to try some.
Unfortunately, Eddie couldn’t have any apple slices because we quickly recalled that he was under NPO (”nothing by mouth”) status in preparation for a possible bronchoscopy. However, later in the day, when they pulled the NPO order, Eddie helped himself to a little snack: a bite of a Korean snack cake and a whole tangerine!
Eddie was like, hmm, this food tastes pretty good. Doesn’t make me want to gag.
For dinner, he had a small portion of rice, meatballs, and kimchi. Can’t keep a Korean from his kimchi!
Eddie’s still in the hospital being treated for his pneumonia, but the fact that he’s able to eat, even if it’s just a few bites here and there, has sure given us all an extra boost in morale.
Who would have thought that one of the positives of coming down with pneumonia is that Eddie’s gut issues have been derailed? (That’s probably not true, but the timing sure makes it seem that way).
Nausea is something that Eddie will likely have to grapple with again because of the myriad of drugs he’s on and his eventual chemotherapy, but this reprieve from the nausea, however long it may last, is much appreciated and will not be taken for granted.
In the mean time, let us hope that Eddie gets a break and can enjoy some birthday cake tomorrow!
Eddie vs Nausea –
Eddie FTW!
Eddie’s status: Still in the hospital with pneumonia.
Despite the heavy regimen of Vancomyacin and Zosyn for the past 5 days, looks like the pneumonia is not backing down. Eddie continues to spike a fever, requiring him to take Tylenol around the clock to keep his temperature in check. Also, the excruciating pain in his chest area came back with a vengeance last night. Needless to say, the past 24 hours have been quite a doozy for Eddie.
Based on images from CT scans of his chest and abdominal area, the doctors believe that there is an abscess in his right lung, likely caused by a bacterial infection. The exact nature of the marks they see on his chest images is still being determined, but that’s their current theory.
The way I understand it is there’s a piñata full of debris and fluid positioned somewhere near the border between his lung and diaphragm, causing Eddie a lot of pain whenever he inhales or exhales– oh, you know, just whenever he breathes. No biggie.
While the doctors work on getting to the bottom of Eddie’s pneumonia conundrum, they’ve impressed on us the importance of Eddie taking deep breaths. These deep breaths open up his chest and can help clear out some of the gunk that’s built up.
I know what you’re thinking, wait, what? But, it hurts when he breathes!
You’re right. It hurts a lot. Eddie describes the pain akin to being stabbed with a knife.
In order to help Eddie cope with the pain, the doctors set him up with a PCA, a patient-controlled analgesia pump that dispenses a potent narcotic pain med called dilaudid. At the push of a button, Eddie can dispense a small dose of the dilaudid to help him immediately counter his pain symptoms.
I know the thought of a patient being in control of a strong narcotic sounds iffy, but the PCA has been extremely helpful as it allows him to receive the pain relief when he needs it as opposed to waiting hours between each full dose.
Eddie and his entourage of drugs, including the PCA filled with dilaudid
In addition to pain management, the doctors have tasked Eddie with exercising his lungs through a device called an Incentive Spirometer. He has to keep the yellow cup afloat for as long as he can on a single inhale.
Eddie reached a personal best of five seconds!
The meds and exercises will hopefully help clear out some of the debris and liquid in his lungs, but Eddie’s team of hematology/oncology doctors still need to figure out more about the culprit behind his pneumonia. Is it bacterial? Fungal? Maybe something not yet discussed?
Tomorrow he’ll be examined by the pulmonary (lung) doctors and undergo a bronchoscopy where they will stick a scope down his trachea and grab some sputum sample from his lungs. The hope is that the sputum cultures will provide more empirical data on the specific nature of Eddie’s pneumonia.
As for the bone marrow transplant, all plans are on hold until they take care of Eddie’s pneumonia. Or, at least, that’s what we’re assuming. We haven’t really heard from the transplant team.
Pneumonia is an unfortunate setback, but Eddie is holding strong. Once he takes down the pneumonia, he’ll get back to fighting his Aplastic Anemia.
Take that, pneumonia!
Alas, Eddie’s bone marrow transplant kick-off has been delayed thanks to some pesky bacteria that managed to find their way into his lungs.
We checked into the ER Tuesday evening, the night before Eddie’s scheduled “Arrival Date”, his official handoff to the Bone Marrow Transplant team.
This was Eddie’s third time going into the ER for a fever, so by now we’ve learned the drill. First, the ER staff checks your vitals, hears your story, and then takes some blood cultures and chest x-rays. Then, because they know that you are neutropenic they efficiently ply you with some broad antibiotics like Vancomyacin and Zosyn to quickly attack whatever bacterias running amok in your body.
Just keep shooting and hope you get those suckers. I guess that’s a good plan…
Chest rays, Eddie’s persistent cough, and a sharp pain that radiated from his chest to upper back all point to some inflammation in his right lung. The doctors tell us that Eddie has pneumonia.
Bacterial infection in the lungs :(
When you have Aplastic Anemia, it’s pretty hard to avoid infections, especially when you have to go to a bustling clinic every single day, like Eddie does. No matter how careful we are to wash our hands and avoid people and their germs, Eddie is still vulnerable.
Germs be everywhere.
Eddie was actually doing pretty well for the past 10 days at home. Unfortunately, his body has the uncanny ability to get sick just when he’s scheduled to meet the Bone Marrow Transplant team. The Bone Marrow Transplant doctors have become a gang of mythical creatures to me, like a pack of fairies we keep hearing about, but have yet to see with our own eyes.
No worries, though. We shall meet with them when Eddie’s feeling better.
Bone Marrow Transplant Team, we’re coming for you!
Eddie is still running a fever so that means they haven’t gotten a handle on the infection yet. We’re hopeful that the steady regimen of antibiotics they got him on will take care of business.
I will keep you all posted. In the mean time, send positive thoughts our way, please.
Hi folks. Eddie here.
I’d like to take this opportunity to get you caught up on what’s been going on for the past four months since my diagnosis – but before all that, I’d like to provide some fair warning. Anna and I thought it would be a good idea to start this blog in order to keep loved ones abreast of my road to recovery. The intent is to provide real time information about my treatment, inject a little humor when we can, and perhaps provide a little inspiration if possible. Having said that – the simple truth of the matter is, Aplastic Anemia is a terrible and debilitating disease. Some of our my posts (like this one) may depress you, as I describe a few of the difficulties I’ve been experiencing. While it may be cathartic for me to write about how awful I feel, I realize it’s a bummer to read about. So for that, I apologize in advance. Feel free to skip these posts if need be. I promise not to get offended.
Moving on…
So what exactly happened? How did I get diagnosed with AA? (I’ll try to make this as brief as possible, but it’s a long story). Right around Thanksgiving last year, I noticed my hair start to fall out in alarmingly large clumps. I felt physically and mentally fatigued for no apparent reason. After a couple trips to urgent care and my primary care physician, I had my blood drawn and tested to see what was going on. A couple days later I got a serious call from the clinic. The doctor informed me my platelets, red blood cells, and neutrophils (white blood cells) were at critically low levels. I’m promptly instructed to have someone drive me to the emergency room, and to take care not to fall, bump my head, or cut myself, since I’d bleed out and potentially die.
Fast forward a couple hours to the ER and subsequent admission to the hospital. The hematology/oncology (blood/cancer) doctor informs me that based on initial tests, I most likely have Leukemia. Later, when no one is looking, I Google “chances of surviving Leukemia” on my iPhone.
Fuck.
Fast forward another couple of days and I find myself with a giant, thick-gauge needle jammed into my lower back, digging through my hip bone to aspirate a core of bone marrow for biopsy. Another few days go by.
When the results from the biopsy are finally back, doctors tell me they were unable to detect any cancer cells in my bone marrow.
That was a relief, and still is, since my disease is not considered malignant. Instead, I’m told I have something called Aplastic Anemia. I suppose it’s the lesser of two evils, but I’d soon learn how tough of a diagnosis that would be. As Anna mentioned, AA is pretty rare so there isn’t a ton of medical research out there on it. Treatment can also be pretty difficult since the disease affects individuals so differently. The majority of cases are considered idiopathic, which means doctors can’t determine how or why some people get the disease. It can be acquired (exposure to something nasty like chemicals, radiation, viruses) or inherited (your DNA predisposes you to AA). I’m told my AA was probably acquired.
Doc: Actually, you don’t have cancer. You have Aplastic Anemia.
Me: Umm… Hooray?
At this point, the doctors have told me they will move forward with an immunosuppressive drug therapy regimen. The thought is, since my immune system is what’s “attacking” my bone marrow and not allowing it to make blood cells, let’s use drugs to suppress the immune system and give my marrow a chance to recover.
The bad news, it didn’t work. The worse news, my body took a thrashing in the process. For every drug that’s been injected or swallowed, if there was a negative side effect, I think I got to experience it. Severe stomach pain (enough to go to the ER and get shots of morphine), mouth sores, gingival hyperplasia (an overgrowth of gums in the mouth – Google it if you’re feeling adventurous), hand tremors, muscle and joint pain, headaches, stomach ulcerations, nausea, vomiting, loss of appetite… These are just the ones that come to mind right now.
The reality is, I’m pretty sick – and I look the part too. Bald head, pale face, dark circles under my eyes… Before AA, let’s just say I had a healthy appetite for life. I was probably weighing in around 200+ pounds. Now, just a few months later, I’m down to 165 since I’m unable to eat (I get my nutrition overnight through an IV that I hook up to this tube/needle thing called a port that sticks out of my chest 24/7). The worst part is the weight I’ve lost is all muscle mass. I have this disproportionate layer of fat over basically no muscle. I’m officially skinny fat.
When I look in the mirror (except with less hair on my head)
Needless to say, the past few months have been the absolute roughest of my entire life (and for those who know me, I’ve been through my fair share of tough times). I’ve lost count how many times I’ve had to go to the ER (they actually treat me like a VIP there – I basically go to the front of the line and get a room with a bed, when others have been waiting for hours – perhaps the only perk of Aplastic Anemia, haha). I’ve definitely spent more days admitted to the hospital than at home. Hospital stays suck. It’s noisy, and you’re constantly bothered even in the middle of the night by a nurse who needs to check your vital signs, take some blood samples, shove some pills down your throat, or infuse you with platelets. (Don’t get me wrong. I actually have an enormous amount of respect for nurses and the hard work they do. I just tend to sound bitter when they don’t let me sleep).
Arriving at the Emergency Room like…
I do have my good days, and I try to stay as positive as I can, or at least smile and put on a strong face for others. Honestly though, life these days can be pretty miserable. I often feel like I’m on one of those dizzy-spin carnival rides that make you sick to your stomach and hate life. I know that in due time the spinning will stop and I’ll be allowed off this ride, but until then… round and round she goes.
So what’s gotten me through all this? How am I still standing? What’s prevented me from having a complete mental breakdown?
My caregivers, who also happen to be the three most important people in my life. My mom, my dad, and Anna. Lifesavers is probably the more appropriate term.
I plan to dedicate my next three blog entries to each one of them so stay tuned for that. I promise you I’ll write something a little more uplifting, or at the very least, not so bleak.
And if you were able to make it through the end of this long post, despite me being such a bummer and opting to utilize my always under-appreciated stream of consciousness writing style… Thank you.
Cheers,
Eddie
Still in the fight.
Hello friends, family, and internet strangers,
This blog is dedicated to chronicling Eddie’s epic battle against Aplastic Anemia and his road to recovery.
If you’re reading this blog, you probably really care about Eddie and want to know how he’s doing or you scoured the web for all things Aplastic Anemia and stumbled across this blog. Whatever your reason is, we appreciate your interest in Eddie’s story and we hope that you will take comfort in knowing that Eddie is a fighter, trained to push through the hard times, and blessed with a strong support group of family members, friends, and healthcare professionals.
I, Anna, Eddie’s partner in crime and co-writer of this blog, will do my best to keep you updated on Eddie’s journey and hopefully share some insight into what it’s like to battle something as crazy and obscure as Aplastic Anemia.
Speaking of which, what the heck is Aplastic Anemia, you wonder. Don’t worry. Neither of us had heard of it either.
Here’s what Eddie felt when he was told he had Aplastic Anemia.
Aplastic Anemia is a rare condition in which your bone marrow stops producing blood cells — that includes white blood, platelets, and red bloods — the whole shebang. Fortunately, you can boost your level of red blood and platelets through transfusions in the short term. White blood cells, unfortunately, can not be infused. When your white blood cell count drops down to zero, like in Eddie’s case, you’re classified as neutropenic. This is a big deal because your white blood cells are what fight off infection and bacteria. I know.
Ay carumba!
Aplastic Anemia is so rare that it’s estimated that 4 out of every 1 million people in the U.S. are diagnosed with Aplastic Anemia. Man, if only we had had such luck with the Power Ball!
You can imagine when Eddie was diagnosed with Aplastic Anemia. We were like, “Oh, good. It’s not cancer, but it’s what now!?“
Eddie’s diagnosis and early treatment efforts make for an interesting tale, but I will have to save that for another post.
The big news this week is that Eddie’s doctors have concluded that the ATG drug therapy he was on for the past few months did not work, and now it’s time to try a bone marrow transplant.
A BMT is certainly no walk in the park, but we hope that it’s the thing that will cure Eddie of his Aplastic Anemia. Bone Marrow Transplants are currently the only thing that have been proven to cure Aplastic Anemia completely.
There are still a few weeks of consultations, exams, and tests that Eddie needs to undergo before the bone marrow transplant happens, but the process has been set in motion. I will be sure to update the blog on how things progress.
I will end with this. I know firsthand how hard it is to see someone you love endure such hardship. To anyone who is feeling this way, I just want say that as long as we support each other, we can muster up the strength to put up the good fight. Or, as they like to say in Korea, hwaiting!
