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.
