Emily M. DeArdo



I am not brave

essays, health, transplant, CFEmily DeArdo2 Comments

Let's just get this out of the way. 

I am not brave. 

I am not courageous. 

I am definitely not a saint. 

Yet, people call me, and people like me, these things. 

This makes me really uncomfortable. 

Having CF, and having a transplant, do not make me brave. 

Are you brave when you get up, get dressed, have your breakfast, and go to work? When you do the dishes and get the mail and pay the bills? No. You're living your life and being responsible. 

When I did my treatments, took my enzymes, went to clinic, did IV meds...that was my life. When I take my meds in the morning, when I go to clinic now, that's my life. That's completely normal to me. It's not brave. It's not courageous. 

Deciding to have a transplant? It was just deciding to live my life, to do what I needed to do to extend it. I wasn't afraid of dying on the table, because I knew without the surgery, I'd die anyway. So, choosing transplant wasn't brave. It was pragmatic. 

Going to college? Getting my degree? Working? Again, no brave. Not courageous. Living my life. That's all.

When I see stories about how "Brave" people like me are, because we live with illness, I want to scream. It's not brave. It's just doing what you have to do with the hand you're dealt. What would you do? Curl up in a ball and refuse to leave your room? Refuse to do treatments? I guess. I knew CF people who did. 


Bravery and courage are not what I have. I hated selling Girl Scout cookies. I'm not brave. I won't sky dive or even do a high-ropes course. I'm NOT A SAINT. I just am. I live my life the way all the rest of you do. This morning, I took my pills with my coffee. I've been taking pills with my breakfast since I was about two years old. It's not out of the ordinary. It's not brave. I'm not brave when I "let" people stick me multiple times to get an IV in. That's not bravery. That's what I have to do. What's my other option? 

My parents are brave. They hold it together when everything is threatening to fly apart. I am not brave. I'm just doggedly stubborn. 

Brave people are the people who rushed into the World Trade Centers on 9/11 to save the people inside, knowing they would probably die.  Navy SEALs are brave people. Soldiers, firemen, nurses, first responders--they're brave. I don't put my life on the line. I don't do anything to save other people. 

So please don't call me brave. I'm not. 


(Catholic 101 is now available! Pick up your copy here: https://gum.co/RMkqu


Twelve Years, and a Celebratory Pork Chop

food, health, transplantEmily DeArdo3 Comments
Me as an intrepid toddler. 

Me as an intrepid toddler. 

Twelve years is a substantial amount of time, if you think about it. It's your entire education from first to twelfth grades. It's an entire pro sports career, if the player is lucky. Ad it's how long I've been alive with another person's lungs inside me. 

It's insanely lucky. It really is. When I consider the people who don't get listed, who don't get the call, and then who don't survive past five years (which more than half of female lung recipients don't)....it's amazing to be so gosh-darn lucky. It's miraculous, really. 

So I thought it would be appropriate to share a good bit of food with you. Before transplant, I hated food. I liked cooking and baking, but I really didn't like eating much of it. Post, I loved it. The entire world of food opened up to me. 

Just recently I've been working on tempering the two--eating what's good for me, in good portions, and not going overboard on the stuff that's delicious but not so healthy. I'm seeing results on a lot of levels, which is exciting, but I'm also learning how to embrace cooking really great food that's also not terrible for me. Thus, this pork chop recipe. 

You can eat it just as it is, or serve it with some buttered leeks

Here's to more celebratory pork chops. 

Celebratory Pork Chop

This is the best pork chop you will ever have. I guarantee it. 

Start with two thick pork chops, about an inch. Don't trim the fat off. Season with with kosher salt and fresh ground pepper. 

Preheat the oven to 375. Drag out your oven proof skillet (cast iron is great). Heat it over medium high heat, and add olive oil to it. When the pan is hot, add the chops. Cook for three minutes on each side, then throw the whole thing, pan and chops, into the preheated oven for 30 minutes. Remove the pan and put the chops on a plate to rest for four minutes. 

Make a pan sauce--in the hot pan, add 1/2 cup water or stock, let it reduce a bit. Add 2 teaspoons dijon mustard and a good knob of butter--about a tablespoon, but whatever odd pieces you have in the fridge. Whisk together. Serve the chop with the pan sauce. 

Enjoy deliciousness. 

(Also, are you an organ donor? Please be one. When I was first listed, 18 people died every day waiting. That number is now 22 people, and the national list stands at 118,000 people who are waiting for new organs.  Sign up here. ) 

Charlie's Dignity

current events, healthEmily DeArdoComment

I love my parents. They've done yeomen's work the past 35 years, helping to keep me alive. I know parents who do not do a good job with their children's illnesses--my parents have been rockstars on every level. 

I love my doctors. They are also rockstars. They are the people who continually keep me alive, even when other doctors have told them that it was a waste of time and/or effort. I have a doctor who got an international pager (back in the day) so we could always contact her. I have nurses who will answer my emails at any time. I've worked with incredible medical professionals of all stripes. (And some that suck. But we're not talking about them today. We're talking about the awesome people.) 

Most of the time, the two groups of awesome are in agreement about what should be done. But not always. When I was in the ICU in 2001, and no one knew what was wrong with me, several of the ICU doctors were ready just to write me off. My parents weren't, and neither was my doctor, or the head of the ICU, who worked insanely hard to figure out what was wrong with me--eventually, they did. And I'm writing to you today. 

Doctors are awesome. But doctors can be wrong. And parents are awesome. But parents can be blinded by love. 

Which is why we need moral and ethical guidelines in place, in cases where the two groups of Awesome cannot agree on what is the proper course of action.  Except...what do we do when doctors want to embrace a course of action that will kill their patient, and the parents are vehemently opposed? 

If you aren't familiar with the case of little Charlie Gard, here's the nutshell: Charlie has a very, very, very, VERY rare disease--so rare that maybe 17 other people in the world have it. Since birth, Charlie has been treated at London's Great Ormond Street Hospital (GOSH). Because of Charlie's disease, he cannot breathe on his own, and he cannot see or hear. 

GOSH wants to take Charlie off life support so he can die, because they feel he's not going to get any better, so it's time to embrace the inevitable. His parents, obviously, are against this, because Charlie is alive with the help of ventilators--like many other people, in ICUs the world over, or people who have tracheostomies. They are alive because of machines, but they are alive. A ventilator or breathing support really isn't an extraordinary measure, these days, on its own. 

The parents would like to take Charlie to the United States to try another treatment--GOSH won't let them. This case went all the way to the European Court of Human Rights, which sided with the hospital.  (Isn't that just dripping with irony?) 

What's the hospital's argument? That the treatment the parents want to try will cause Charlie pain and suffering and it won't work, so they refuse to let Charlie's parents try it

I find the hospital's "reasoning", on multiple levels, insane. One because doctors are supposed to help patients--not kill them, which is what would happen if Charlie was taken off the ventilator. It's no different than removing a breathing tube for a quadriplegic. Now, Charlie's condition, as it stands now (and as I understand it), won't get better. He's going to die. But that doesn't mean the parents don't have every right to try another treatment, in another country, that the parents are going to pay for. The money's already been raised. Hospitals in the US, as well as Gesu Bambino hospital in Rome (which is run by the Vatican), have offered to take Charlie as a patient. But GOSH will not release Charlie to his parents' care. 

Just because Charlie cannot breathe on his own, cannot hear, and cannot see doesn't mean his life has no value. OK? I can't hear without my CI, really. So does my life have no value? I've been on ventilators before. Did my life have no value then? Does Stephen Hawking's life have no value, because he has a tracheostomy? Or people in wheelchairs, or quadriplegics, who also need help to breathe and do just about anything on their own? Since when is the value of a person determined by what they can do? 

When a person is dead, then yes, it's time to let the child go. But Charlie isn't dead. This isn't the case of parents fighting a hospital over a brain death certification. Charlie is alive, and the hospital wants to stop that--because he might be suffering. And he's not going to get any better (they think. They might be right. But we don't know that.). 

I talk about this sort of thing a lot here, because people need to realize that life isn't about what you can do. Life has value because a person has value, no matter what. Pain and suffering are inevitable parts of life. 

But apparently no one told the folks at GOSH, or the European Court of Human Rights, this. Because Charlie's life, to them, isn't really all that important. They've kept him alive long enough. Now it's time to just shut of the machines and kill a little boy. And if we're going to talk about pain and suffering, they will basically suffocate Charlie by removing his ventilator. Is that going to cause pain and suffering? I think so.  

I'm not going to say the hospital doesn't care. I'm sure the nurses and doctors who care for Charlie care very much. But the state has clearly overstepped its bounds. 

Charlie can't make a decision on his own about his care. His parents have to do it for him. They would like to, at the very least, take him home to say good-bye to him, and let him die with them, in real dignity, not the fake dignity the state is suggesting.   If Charlie's parents decided that they wanted to pursue hospice care for their son, that should be their decision, and the hospital should give them the resources they need to make sure that Charlie can have a peaceful passing. 

Is it inevitable that Charlie will die? Yes, because we all will. But there is absolutely no need to hasten it, the way GOSH wants to, because The Almighty Doctors have decided that it's time for Charlie to die. 


Surgery update!

health, transplantEmily DeArdoComment

Part...I have no idea. Three, maybe? 

So just to recap: had stitches in my head. (Wear sunscreen!) Had a follow-up two weeks ago, where the doctor checked out the healing. It's progressing well, but he wanted to keep the stitches in for a little longer. 

Today, I had my second follow-up and the stitches are out! 


So now I just have to apply vaseline once a day and I can't totally submerge my head in the pool--but I generally don't do that anyway. 


Surgery wrap

healthEmily DeArdoComment

Above: Post-surgery necessities .

I'm back! I didn't have to stay overnight, either, which was great. 

So, mostly the surgery was uneventful. The nurse I had didn't want to use my port because she was afraid it would get infected. Um, OK? I mean, unless you're planning on rolling around in mud with hogs and then inserting it, I think we're good. Anyway, Dad and I made it clear that the port was all I have going on, good vein access wise, so people came in and got it going. Per it being mine (and therefore, difficult), it took two tries to get it working, but once it got going, it went merrily on. 

The anesthesiologist was a Penguins fan, so I appreciated that. I tend to get really nauseated after surgery, but this time the hospital gave me a little anti-nausea patch to wear, that worked like a charm! I'm a fan!

The only other issue we ran into pre-op was what to do with my CI. Since we were moving scalp around, I didn't want my CI to become lost in the process. At the same time, I needed to be able to hear if people were talking to me in the OR. So I managed to keep it back into the OR with me, but not my glasses, which annoyed me, since lip reading and being able to see are important to my being able to figure out what's going on around me. Oh well. (Another difference between a children's and an adult hospital--at NCH, I can keep my glasses with me the whole time. Makes my life easier.)  

The surgery took about an hour and then I was in the recovery unit for awhile. Dad and I got home around 5:30, 6:00, and I had a very small dinner because I had a very sore throat, and was in bed by nine. God bless Halo Top ice cream! (Yes, I've been intubated many times before, but I don't remember it being quite so uncomfortable after. But whatever. It's fine now) 

Today I am feeling pretty good. The pain meds I have keep the pain really well in check, which always makes me happy. I'm not allowed to exercise until next week, post-surgeon clearance, so there's going to be a lot of reading happening this week. Not that I mind that. I can make a dent in my book pile! 

The other thing is the lovely dressing I have on my head. I can shower--yay!--but there is part of the area that the surgeon left open to drain a bit--in order to get it to close he would've had to have made a much larger incision. So we're just letting it drain, but that means I have to keep ointment on it, and gauze pads. It's not nearly as bad as post-Mohs, or even immediately post-surgery, but it will look sort of odd. I'll probably be trying to hide it under my hats. :) 



Les Incompetents

healthEmily DeArdo4 Comments

(Credit to my mom for the title of this post!)

This week has been, for various reasons, Full of Wrath. There was general annoyance from having a busy week, trying to get a lot of things done pre-surgery, and my sinuses being silly, which laid the groundwork. Then my hockey team played two EXQUISITELY CRAPPY games. Super enjoyable. (NOT.) But they redeemed themselves Wednesday night and are going to the conference finals. 

However, all of Wednesday (before the Penguins won) was just terrifically wrath-y. Because some hospitals are terrible. Namely, adult hospitals that aren't used to dealing with people who have a complex medical history! 

Settle in for the story. 

As we know, I am having surgery next week. Now, the docs set the surgery date three weeks ago. And at that time, we (meaning me, my family, and my transplant team) asked the surgeon and his staff if I would need any pulmonary testing (like PFTs).  Do I need to see my doctor ahead of time? Etc. etc. 

"No, no, nothing like that. We have our pre-admission testing and that's all you need," they said. 

So I wake up yesterday at 5:15 and get myself to the hospital for pre-admission testing. It is in a small room off, quite possibly, the ugliest hallway in creation. 



After filling out paperwork and listening to a guy have a very loud conversation  on his cell phone in the waiting room, I got called back to register. Here, I was asked to give a "down payment" of $320. 

Yeah. I was thinking a co-pay of like, $40. NOT three hundred and twenty smackers. But I fork over my credit card. You would think, right, that if something like this was coming, they might have told me ahead of time? I've never had to give a "down payment" of any type before.

I'm then seen by a nurse, who goes over my stuff (meaning my paperwork and my med list), takes my vitals, and does an EKG. She is inordinately concerned about whether or not I have sleep apnea. I don't. 

Finally the doctor comes in. This guy is a "hospitalist", and from what I can tell, his job is to basically make sure that I'm healthy enough to survive surgery. He verifies this by listening to my chest and checking my throat. He tells me I can take my meds the morning of surgery, which I knew, but I trust but verify. The guy's nice, but basically useless for my intents and purposes. I have to explain to him how prednisone and immunosuppression affects blood sugars, which is why the last time I was at this hospital, I was on insulin, but now I'm not.....

So at this point, this morning has been a total waste in terms of actual surgical prep, but whatever. We're almost done. 

Now it's time to take blood. 

The nurse had asked me if I have vein access other than my port. "Um, you can try," I said. "Well, we don't access ports up here," she says. * 

At this point, I'm thinking that, if these people had been on the ball, I could've had a blood draw at the Resort, from my port, and had the results faxed over to this hospital. But I had no idea what was involved in this visit, because Adult Hospital told me nothing. So obviously, I could not have made good preparations, because I am not a mind reader. 

My veins are very tiny. My veins are very scarred. My veins are basically terrible. If you want to torture a person, ask him to take my blood. It can take over an hour. For IV insertion, it can take all day. And no, I'm not kidding. There was one time, pre-port, where it took about four nurses all day to get any sort of peripheral line in me. (A peripheral line is your basic IV.) Ergo, I like to save my veins for when we really really really need access and really really really cannot use the port. This doesn't count as a really really really need situation. 

"Our guy is really good," she says. Internally, I roll my eyes. Some people are magical, it's true. But they are few and far between. 

So, the "really good" guy comes in. I know this is most likely not going to work, because he won't have needles small enough for my veins. Which he doesn't. He will also have to be creative in finding a good vein. Which he's not. Sure enough, he sticks me in the back of my left hand ( in a tiny tiny tiny almost invisible vein), which doesn't work. So he sticks me again, near the crook of my right arm, and does manage to get blood. "That might bruise," he says. 

(Yeah, it might. At the moment it's a lovely shade of black, deep purple, and yellow. It almost looks like a spot of velvet. There's bruising, and then there's bruising. My hand looks OK though.) 

So I go home, get lunch, and decide to go over to my parents' house to apprise Mom of the morning. This was a good idea. 

Because, at my parents', Mom gets a call from Riverside. The "really good" tech had ruined my blood samples by allowing them to clot. So we can't use them to run the blood tests. I now have to have more blood drawn

Imagine Beeker swearing, and you'll have a good picture of my reaction. 

Imagine Beeker swearing, and you'll have a good picture of my reaction. 

But at least I can go to Children's and go to infusion. So I finish my lunch, and, in full Wrath mode, drive to Children's. In infusion, my labs are drawn competently! Yay! They commiserate with me, and I leave.  

What makes this even worse? The Adult Hospital didn't even apologize for this massive inconvenience. Not even a form, "We're sorry that this happened."  And what if I was working? I'd have had to convince my boss to let me leave work again to go and get blood drawn. Because, obviously, it must be done that very second. (Seriously. The woman asked my mom when I'd be at the hospital--she wanted a time. I had an image of her hovering over a fax machine, breathlessly awaiting my results....)

(Just a note about blood draws: It's not the blood draws that were bothering me. I've been having blood taken from me regularly since I was a toddler. I'm not afraid of needles and it doesn't hurt. What made me angry was the sheer incompetence and idiocy.) 

When I get home post-draw, I find out that Adult Hospital has now decided they need me to see my pulmonologist before surgery. Meaning, before Wednesday. Meaning, Monday, which is the only post-transplant clinic day. 

Remember how they said I didn't need to do this? Yeah. So do I. 

So clinic, magically, wonderfully, arranges for me to be seen on Monday morning. (And, again, imagine if I was working. I'd have to tell my boss that now, I also need all of Monday morning off. When I was working, Monday morning was one of our busiest times all week.) 

This is why Emily doesn't like adult hospitals. They have no idea how to deal with a medically complex patient. NONE.

Les Incompetents, indeed. 


*For the record: ports are not hard to access, once you know how.  My mom was taught by the NCH nurses, and we access it at home every month, to make sure it's working and give it a nice Heparin flush to keep clots from forming. I could probably do it**, if I had the right materials. (I do de-access myself, a lot of the time.) I could definitely walk someone through it. I hate that hospitals don't teach more nurses how to do this. IT IS NOT HARD. It's not like brain surgery, here. It can be taught to any competent person, and performed by a competent, detail-oriented person. My mom does it every month without any issues. But then, she's sort of magic like that. She's also learned to change burn dressings and clean them, give and constitute IV meds, and all other sorts of magical things. 

** Many people do access their own ports. Mine is in a sort of wonky position, so I don't do it. But I know how, if I ever had to. 





Surgery updates!

healthEmily DeArdo4 Comments
The reaction of most people when I say "skin cancer" is a lot like this.....

The reaction of most people when I say "skin cancer" is a lot like this.....

So, I have dates for my procedures/surgeries, etc.! 

This coming Wednesday, I'm going to the hospital to have the pre-admission testing done. I'm guessing this will just be heart stuff and vitals--like an EKG and regular stuff. It could be more than that, but that's not what I'm anticipating. Apparently I will also be talking to a doctor, for some unknown reason. This isn't normally how I do pre-admission testing at the Resort; in fact, sometimes there's no testing at all, just a phone call from a surgical nurse to get a history. So this is all new and so much fun! (sarcasm off.) 

Next Tuesday (the 16th), I have my Mohs surgery to actually remove the cancers from the top of my head. These are both squamous cells, not melanomas--so it's not nearly as serious as it could be. However, these guys are bigger than what I've dealt with thus far, so I imagine it will take more than two rounds of surgery to remove the cancerous cells. (For more on how Mohs surgery works, read what I wrote about it here.) The procedure is at 9:30 and I'm to wash my hair really well before I head to the doctor's office, which makes sense, given that it won't be able to be properly washed for awhile. 

After my dermatologist removes all the cancer cells, I get to go home. The next day (May 17), I will go to the hospital with my dad to have the surgery which will actually close the spots my doctor made the previous day, and he (my doctor) will do all the plastic surgical magic to ensure I have hair and not bald spots. (You can read about that here.) I may or may not stay overnight at the hospital. But I will definitely spend a day or two at my parents' since I won't be able to drive and can't be left alone for various reasons, so...whatever. No biggie. 

I'm not anticipating this to be any sort of big deal. But then again, when you've basically been cut in half, nothing is a big deal anymore. Really. And even in the area of head surgery, this is low-key on the Big Deal Chart. When I had my CI implanted, part of skull was removed. That, to me, is a much bigger deal. :) There's a magnet in my skull, people. Moving some scalp around? Not  a problem. 

As far as blogging: There will be a yarn along this week, and mayyyyybe next Tuesday before I go in for surgery. But after that, there may be blogging hiatus. :) 


Yarn Along No. 58 and a Medical Update (Oh, joy!)

books, health, knitting, yarn alongEmily DeArdo1 Comment

The kerchief continues! The nice thing is that I'm finally getting used to working with linen, and I really like it. I think this is going to be a great finished product. I also have the blocking mats and pins that I'll need to finish this project, even though that's a ways off in the future--I wanted to be prepared! I've never blocked anything before, but fortunately Hannah has some great advice on finishing linen pieces.   

So here's this week's progress. I'm getting near the end of the first ball of yarn, and there are three, total, for this project. So even though it doesn't seem like it, I am making progress! 



Ravelry notes here. (The pictures here are where you can really see the progress.) The book is Crossing to Safety, by Wallace Stegner. I've heard good things about it, but I've never read it--so I decided to fix that! I'm enjoying it so far. 

So, on to the Medical Update. 

As you may remember, I've been having some skin cancer issues. I actually really hate it call it that because it's so not cancer, in my book. I mean, it's stuff we're removing with local anesthesia and it's so easy. It's not cancer, to me. But technically, it is. So, I suppose for our purposes I'll be technically correct. 

(And no, this isn't because I'm fair, and I just didn't wear sunscreen. I've had some people react like that when they see the scar on my forehead from my last Mohs surgery. I then have to tell them that, no, it's not because I was negligent. Anyway, all those details are in the link in the above paragraph.)

So! There are four spots that we wanted to deal with--three on my head, and one on my chest. The three on my head and divided into two areas--one on my forehead, and two on my scalp. The forehead, chest, and first scalp one have been dealt with. But the last one is on the back of my scalp, it's rather large, and my dermatologist wanted a plastic surgeon to "close" it. 

I met with the plastic surgeon yesterday. He is very nice, very smart, and my kind of doctor. The easiest thing to do would be to do a skin graft, like the one I have on my right arm. But that also means that you have a bald spot on your head. So we're not doing that option. We're doing something called a scalp rotation flap, which basically means we're going to move part of my scalp to cover the surgical site, so that I have hair there! I'm not really sure of all the ins and outs of the procedure, technically, and I'm sure you don't want to know. :-P The end result is much more cosmetically pleasing, and, honestly, for me, it's probably easier. Skin grafts involve taking skin from other places on my body, and that means you have two surgical sites you have to deal with. That's not fun. So I support the doctor's plan. 

Because of my medical history, this is going to be done at a local hospital (the same one where I had my cochlear implant surgery, so I'm familiar with them, and they have records about me already!). That way, my surgeon can either discharge me the same day, or, if he needs to, he can keep me overnight. I like this plan a lot, because I want to make sure that any issues are dealt with appropriately, and in a real hospital setting (as opposed to an outpatient surgical center), my people have all the things they need to take care of me, should the need arise. I like that. It makes me happier. 

The process is in two parts: my dermatologist will remove the actual cancer, and my plastic surgeon will close/reconstruct it. Thus, the two of them have to coordinate their schedules to make sure we can do this in a timely manner--meaning, in May, and in a way that doesn't leave me with an open spot on my head for days on end while we wait for a surgical slot to open up. So by the end of this week, I should have dates and times and all that good stuff. 

Being me is never boring. 


Transplant side effects: Skin Cancer

health, transplantEmily DeArdoComment

I generally don't worry about statistics. 

Before transplant, I caught bugs that very few people caught. Non-infectious Tb? 4% of the CF population gets that. The bug that almost killed me in college? One other person in the world. Seriously. Not kidding. At least, documented, one other person

Post-transplant, my stats are flipped. I'm still in the small percentages, but it's good. I'm one of the 55% of women who made it to five years post-transplant. There isn't even data for 10 year survival rates on the UNOS (United Network for Organ Sharing) website--and I'm looking at hitting 12 years in July. 

So when my transplant coordinator, way back in that first July, talked about skin cancer and sun protection, I just sort of nodded. Our ("our" being transplant recipients here) risk of getting skin cancer is 10x higher than the general population. But, I've always been really good about sun protection. I've burned maybe three times in my life. I keep lots of sunscreen around. I seek shade. I go to the dermatologist every six months to get checked out. I am fair, but I'm also Italian, so that probably helps a little bit--but I am generally quite protective of my skin. I'm very familiar with SPF and its iterations in products. 

But. All that being said--eventually, the statistics might catch up with you. 

And so it was that, when I visited the dermatologist last week for my yearly skin exam (I see her more often than that, but this was the annual full body check), she biopsied three suspicious spots. 

And all three of them came back as types of skin cancer. Squamous Cell Carcinoma, (SCC) to be exact. 

So tomorrow I'm having mohs surgery to have these spots removed. We're not doing all three at one go; we're breaking it up into two sessions, one this week, and one next. Mohs surgery involves the surgeon (which my dermatologist is) taking very very very thin slices of skin, examining them under a microscope, and checking for cancer cells. She removes these layers of skin until the microscope shows no more cancer. And voila! No more cancer! So I don't even want to call it cancer, because seriously, this is like, minor leagues. I go in, I get some skin cut off, and we move on. Easy. 

Now, that being said, SCC can be fatal. 8,000 people die of it in the U.S. every year. And of course now I even have to be more careful about sun protection. All my v-neck t-shirts? Gone. I'm going to be adding to my hat collection. There are going to be multiple SPF products in my purse at all times. 

But I can get this fixed and keep it in check with regular dermatologist appointments, and possibly some immunosuppression tweaking. Because that's the big part of the issue. 

Some of the meds I'm on  make the skin photosensitive--really sensitive to light, and can cause it to burn much faster than a normal person's. Hence, the good sun protection strategies I had in place. 

But the immunosuppression drugs also keep the immune system from functioning properly, as we know. And that includes hampering its ability to kill potential cancer cells. 

I've gotten rid of one med that made my skin photosensitive--good! And now we're trying to see what we can do with the immunosuppression. We might not be able to do much, because there's not a wealth of pharmaceutical products we can choose from, here. But we'll see what can happen. Obviously, we want to keep my lungs in tact! And if push comes to shove, that's what I'm choosing. I can wear more sun screen and have my skin checked more often, but it's really hard to find a new pair of lungs, as we know. 

I'm also using this post to implore you to protect your skin, especially if you're fair like I am. Seriously. I know I'm a a much higher risk for these things than the general population, but skin cancer, in general, is skyrocketing in the U.S. Tans are not cool, people. Don't go to tanning beds. Don't "lay out" for hours to get toasty brown. That's not a good look.

  • Wear hats (big sun hats when you're at the beach--baseball caps don't cut it. If you do wear a baseball cap, put sunscreen on your ears!).
  • Wear sunscreen all the time. You can get sunburned on a cloudy day. 
  • Get sunglasses with UV protection in the lenses.
  • If you really need the extra protection, do what I do and get face cream with SPF in it. (This is my favorite. And if you get the big one, it will last you almost a year. Seriously. Mine has. So it works out, budget-wise, because it's cheaper than the drug store bottles of moisturizer that you keep buying. And it's very hard to find SPF 30 in a moisturizer!) And it's worth it to get SPF protection anyway, even if you just want to minimize/delay signs of aging.There's also Clinique City Block.
  •  Fresh's Sugar Lip treatments are what I wear during the day now instead of lipstick, because SPF 15! I really don't want to get part of my lip cut off, guys. And neither do you, I bet. Or grab a regular lip balm with SPF in it. Those aren't hard to find. Foundations and BB/CC creams also have SPF in them. (Bobbi Brown, Supergoop, and Smashbox are three brands to check out.) 
  • This is a revelation to me--hand cream with SPF 40. Seriously? Awesome. 
  • And finally, get clothes--or at the very least, swimwear--with UPF, which is like SPF for clothes. I started wearing one of these last year, and I'm getting another one for our trip to the beach this year. Yes, I can go to the beach, and I'm going to be there with an umbrella, lots of sunscreen, this coverup, and hats! Other companies that have UPF items include Lands End and Duluth Trading Company. It's becoming more and more common, thankfully. 

Anything you do to protect your skin is better than nothing. So even if you're not nearly as high risk as I am, do yourself a favor and learn how to protect your skin--and do it. Be smart. 


The Work of Acceptance

books, essays, healthEmily DeArdoComment
Andrew Wyeth, "Christina's World" 

Andrew Wyeth, "Christina's World" 

A lot of people equate "acceptance" with "giving up." 

This is not true. 

I'm in a book club that's reading A Piece of the World and one of the discussion threads that keeps popping up is that the main character, Christina (who was a actual living, breathing person) is too "accepting" of her disability. She doesn't fight back, she doesn't try, she just gives up. 

Now, the book is about Andrew Wyeth's famous painting, Christina's World, and the woman behind it, Christina Olson, who is our narrator. We aren't sure what sort of illness she had, but it was a degenerative one that eventually took away the use of her legs and other parts of her body. 

In the novel, Christina is first fitted with braces to "fix" her legs. The braces are incredibly painful, causing her to bleed and bruise, and they don't help. She stops wearing them. Her parents want her to try a treatment at a hospital, but when she and her father get to the hospital, she refuses to enter. Later in her life, she tries one last time, but is told to "rest". 

But Christina doesn't pity herself; she goes on with life as usual. She doesn't want treatment because she doesn't think they'll work, and she doesn't see her body as something that is  wrong--she's just the way she is. 

Some people in the group, though, are so irritated that she doesn't try. But what is gained from constantly trying to change things, in pursuing futile treatments that may not help? Christina has decided that she doesn't want to keep trying things that are painful and unhelpful. That's her choice, and that's her call. But it doesn't mean she's just flopping over on a couch and saying, "I give up! I shall Lay Here On My Bed For the Rest of My Days!"  

All of us eventually die. All of us will, eventually, have our bodies betray us. Christina's mother says in the book that Christina is just the way God made her. And that's the way I feel, too, about my body. This is just how I am. Christina accepts it, and goes on with her life.  

Now, does that mean I don't try to fix things? Well, no. I wear glasses and got braces and I do love useful medical treatment that keeps me alive. :) But there are also things that I know I won't do, treatments I won't try, and bridges I won't cross, in the name of keeping me alive or "fixing" things.

Some Deaf people will not have cochlear implants. It's actually a big topic in the Deaf Community (or it was--not sure about now?). Do we try to "fix" a disability (being unable to hear), or do we see it as a disability at all? We know how I came down on that side of the question, but again, I wasn't born Deaf. And a CI is a bit different that a situation that really can't be fixed or cured or changed.

Have I given up? No! But I have accepted my body the way it is. I have accepted its limitations and I'm not willing to do things that may or may not "fix" me. 

This isn't giving up--it's just acceptance. And that takes work. It's hard to try to be even-keeled about things like maybe never having my own children. It's taken years of work. But without acceptance, I'd be constantly chasing some ideal of physical perfection that just isn't possible. I'd be wasting money and time. There are other things I'd rather do, honestly, than sit in another doctor's office. 

As Christina's body declined even further, she still tried her best to do her everyday things. To some, her world was very small, because she never lived anywhere but her small town in Maine, and even then, nowhere by her family's farmhouse. She lived with her family all her life. But by saying that her life was less than, or sad, or that she gave up--that denies her any agency in her life. It denies her hard work of acceptance and living her life on her terms. 

Does her life make other people uncomfortable? Well, probably. She didn't use a wheelchair so she dragged herself around, propelling herself by using her arms. This was probably quite...well, odd, for a lot of people. But too bad for them.

I remember when I needed insulin right after transplant, and a friend of mine said "ew!" when I injected myself at the dinner table, in my own house. "You don't have to look," I shot back.  Normally, if I went out to dinner and I was with people, I'd go into the bathroom and inject myself. But in my own house? Nope. Not happening. 

People used to complain about my CF treatments. "When are you going to be done with that?" Like the nebulizer was some sort of icky contraption, or a poisonous animal. "When I'm done."  I had a roommate once who didn't want my machines in the bedroom we shared; she wanted me to put them in the living room of our townhouse. I didn't want to be doing my treatments in front of total strangers, or getting lots of nosy questions about what these machines were and why I needed them. I wasn't some sort of sideshow exhibit. 

I don't need to make my life easier for other people. I need to make my life work for me. And so did Christina. 





Thoughts on Health Care/ACA/Etc Part One: Some background

healthEmily DeArdo1 Comment

I realize that's not the sexiest title, but I thought that it might be worth sharing some of my thoughts on health care, as someone who both uses the health care system extensively, and someone who worked in government. And since, if I tried to make this one post, the post would be approximately the length of Moby-Dick (and about as fun to read), it's going to be several posts. 

Today: My background in health care and using the American Health Care System 

Tomorrow: Working in Government and Seeing How Things Work (ie, nothing is free!) 

Day Three: Suggestions

I wasn't diagnosed with CF at birth. I was diagnosed when I was 11. However, I had epilepsy before that, and my first hospital admit was at the age of 9 months, so I've been using the health care system intimately for a long time. I always had insurance under my dad's work plan. Sometimes the plan would change and we'd have to deal with companies that weren't quite as good as others (Cigna, I'm looking at you), but I always had insurance. And it was insurance that worked, meaning it paid for the big things, like a two-week ICU stint my sophomore year of college, and lots of not-so-big things, like IV antibiotics at home. 

 I always knew that I had to have a job that would provide good health insurance. Salary wasn't as much of a priority as that was. Working for the government was ideal, because, while the pay was less, the benefits were good. I had three choices of health insurance plans. I chose the most expensive because I knew that my doctors at Children's liked them (meaning, they didn't have to argue with them too much), and they were what I'd had with my parents, so we were familiar with their coverage and co-pays and all that jazz. We knew how they worked. Like I said, this was the most expensive plan and took the most out of my paycheck, but that was secondary to having insurance that was good and would cover things, like the transplant I knew I was going to have soon.  

At that point--2004--I knew I had to have a job, because I couldn't stay on my parents' plan. Back then, you could only stay on your parents' plan through college. The details are sort of fuzzy now, but I think there was a way I could've stayed on their plan, or something, because of all my issues. 

The other option for health care coverage, if I didn't get a job or didn't want to get a job, was Social Security Disability Insurance (SSDI), but I never even considered that, because 1) I wanted to work, 2) I didn't consider myself disabled. Yeah, OK, so my lungs were crap and I spent a lot of time in hospitals. But I could work. I had a brain that worked, I was intelligent, and I was going to use my fancy degree, dang it! I never considered not working, or not going to college.  

So, I had a job, I had health insurance. My  plan paid for my transplant--the surgery, the hospitalization after, the rehab, the drugs. It was good. It did what it was supposed to do, in short. I went back to work and continued to have health coverage. And I still, today, have health coverage (although not as good). 

Obviously, I am a person who requires lots of health care stuff. I require multiple medications to survive (although not as many as I did pre-transplant. Yay!). I wear contacts. I have a cochlear implant. I see a pulmonologist, a cardiologist, an ENT, a dermatologist (because my skin cancer risk is about 10X as high as the general population), a dentist, and an optometrist. In other times during my life, I've seen a rheumatologist, a neurologist, a plastic surgeon, doctors who treat burns, a dental surgeon, orthopedists (two broken bones), and a general surgeon (for when my port was implanted). It's easier to list the departments I haven't been seen in at Children's than the ones I've seen.  I am expensive to keep alive. 

And even with insurance, my family and I have to pay for things. A cochlear implant upgrade? $10,000. Visits to the infusion lab at Children's for blood draws? A few hundred. Pulmonary Function Tests, chest X-rays, CT scans, and EKGs? Yet more money. 

Now, that's the insurance side of it. How about the waiting side of it? Do I ever have to wait for care?


That's the quick answer. The longer answer is, sort of. My ENT, for example, works at various hospitals. When I need sinus surgery, we do it at Children's because they are so familiar with me, and that's where my lung transplant team is. So if I need surgery, I might have to "wait" if he doesn't have an immediate open slot on a Children's Surgery Day.  Even then, though, it's maybe a month or two month wait, and that's because my sinus surgeries are generally not urgent deals. They need done , but it's not like I'll die if they're not done quickly. 

I have never had to wait for any sort of testing or treatment. That's excellent. And it's almost always been like that, with any insurance I've had throughout my life. 

I obviously have a stake in how health care is "done" in this country. However, that doesn't mean that I fell to my knees in gratitude when the ACA was passed. But that's for tomorrow, when we talk about what I learned when it comes to government and health care. 




2017 Goal Setting

writing, essays, goal setting, Tidying Up, knitting, health, current projectsEmily DeArdo1 Comment

The last week of the year usually brings a few things for me--time with family, lots of books, and goal setting for the new year!

Ever since I discovered Lara Casey's powersheets, I've adored goal setting--and I've actually been getting things done. Her shop is called "Cultivate what matters", and that's what the powersheets do. Without them, there's no way I'd have finished my manuscript, written book proposals, sent queries, or upgraded my website/social media presence. That's probably the biggest thing the powersheets have done for me, but I've made progress in other ways, too. 

(And, no, I don't get paid to say this--I just love powersheets!)

I got my 2017 set in November and spent a few days doing the prep work. This is one of the best parts of power sheets. It's where you really get down to the reasons why you want to do things--why do you want to save money, or take that trip, or get that thing? What's your real motivation? Are you afraid to do big things? What's defeated you in the past from reaching your goals? (Lara's current blog series dives into this stuff, too!) 

So after doing the prep work and figuring out my "big" goals for the year, I then break those goals down into monthly, weekly, and daily goals for each month. The idea is that everything you do here is intentionally helping you meet a goal that will help you do what matters in your life. 

With all that said, here are my goals for 2017: 

1. To deepen my prayer life through more regular attendance at daily Mass and more times of daily prayer/devotions. If I don't have a deep, solid relationship with God, nothing else matters. 

2. Pay off the rest of my debts and grow my savings account. One of the things I really like about post-transplant life is my ability to travel, and I want to do more of that--and traveling takes money! So by cutting back on buying things I don't need (I'm doing the contentment challenge in January to help with this), I'll be able to pay off debts and have money for fun things like traveling! Again, there has been progress in this area, but I need to be more consistent. 

3. Be physically, mentally, and emotionally healthy by instituting regular workouts, weekly meal planning, and keeping up with my journal (I've been letting my journal slide of late. I don't want to do that!). I have grown in this area this year, but it's erratic growth. I need to make it a much more permanent part of life.  

4. Get the book published, offer a ebook for sale, grow the blog, and write what matters. I want to write things that matter to the people who read them--things that help you, inspire you, make you laugh, whatever. I don't want to write click bait. I want to write things that improve the lives of my readers. (So tell me what you want to read, OK?) 

5. Fuel my creativity by continuing to learn Italian, working on new art and knitting projects, and, of course, reading. I love learning new things! 

6. Simplify my space: Less stuff, more beauty, more organization, and increased hospitality. I made big progress on this this year as well--cleaning out my closet, taking many books to the secondhand shop (along with CDs and DVDs). So I'm proud of the progress I've made here. But there's more to do!

So those are my six big goals for the year. Each month, these get broken into monthly, weekly, and daily things I need to tend (in powersheets parlance). Daily things are things I want to make a habit--like exercise, checking my checkbook against the online transactions, reading the Bible for 10 minutes every day, practicing Italian. Stuff like that. 

Weekly things are things that get done every week: Daily Mass at least once, making a meal plan, doing a basic clean of the house, putting a certain amount of cash into my emergency stash here at home. 

Monthly tending are bigger things that I can do throughout the month. Some examples from my January tending list are editing my Nano 2016 novel, going to confession, completing a 30 day exercise plan.  

Some things are broken into monthly and weekly categories. The contentment challenge is broken into three months, with a weekly topic in a corresponding book. So there's a monthly "task", but also something to read each week. So the weekly devotion is written in my weekly tending list, so I don't forget to do that. 

I also write the daily tasks into my planner. That also helps keep me on track, because if my powersheets aren't easily available (though I always keep them on my counter, so I can find them quickly!), I can see at a glance what I'm doing that day. It's also great for things like the weekly cleaning--I can dust on Monday, vacuum Tuesday, etc. 

I find this is a better system than making resolutions. Resolutions are OK, but they usually don't have a plan or a why attached to them. "Lose 20 pounds" is a nice resolution--but how to do it? By going through the powersheets, I have an idea of how to do the things I want to do, how to achieve my goals, and how to be accountable to myself. I only have so much time here and I want to use it to the best of my ability!

Do you have goals for 2017? What are they? 









Reviewing the Situation

transplant, healthEmily DeArdo1 Comment

(If you're not a musical theater nerd, the title is from a song in Oliver!) 

So, being off prednisone is fun. Kind of. 

In case you missed it, at my last clinic visit on Halloween, my doctor gave me the go-ahead to go off prednisone for a month. Then I'd do PFTs (pulmonary function tests) again. If things were stable, I could stay off. If they were terrible, then I'd have to go back on. 

I knew that, even though I was only taking 5 mg of prednisone once a day, that being on it for 11+ years would mean a fairly rough adjustment period. I knew there would be joint pain, for one, because my joints are like that. 

So I said I'd give myself a week to adjust. 

Now I figure I better give myself the month. 

Prednisone affect so many things. It affects hormones, which is really the biggest issue. But what that means for the body is that, when you remove it, all or some of the following can happen while your body adjusts back: 

  1. headaches
  2. joint pain
  3. muscle pain
  4. low blood pressure
  5. low blood sugar
  6. dizziness
  7. trembles in your hand and feet
  8. extreme tiredness
  9. nausea
  10. vomiting
  11. low energy levels
  12. Increased anxiety
  13. Weight loss (YAY!) 
  14. dehydration 

That's just some of them. Mine have mostly been physical, and they keep changing. At first it was just the joint stuff. Then the low blood sugar set in, which means I need to have sugar/candy/juice/carbs around the house, to prevent my blood sugar from going too low. I can't say I'm sad to have to have these things around.....but yeah. I was Christmas shopping today and at the checkout counter I was hit with a I have to eat now or I'm going to faint and /or throw up all over this guy while we were talking about gift receipts. Fortunately I held it together until I could get to Jimmy John's and have myself some sandwich and Diet Coke. (I'm still main-lining the Diet Coke as I do this, because I'm still trembly, which is a sign of low blood sugar for me.) To keep the blood pressure up, more salt is recommended, too, but that's sort of always recommended when you have CF, because your salt levels are so wacky anyway.

I tend to have spurts of energy in the morning and then around 12:30-1:00 have the urge to just nap, or curl up and read, which doesn't require a ton from me. Then I get another spurt of energy from about 5:30-10:00. Let's just say my housekeeping is sort of...all over the place right now. I'm trying to keep up with it during the spurts of energy. I'll nap, and then go to bed around 10, because I'm tired again. 

I have lost weight from last week--yay!--and I've noticed that my appetite has decreased measurably. Also yay. Two good things. 

There's also a little bit of brain fog. I'm working on countering that with writing lots of lists and trying to get enough sleep. 

So if you know me in real life, and I seem like I'm cancelling more often, or I'm saying no to things, or you come to my house and it's like, wow, that's a lot of dishes in the sink: I'm working at about half power right now. :) 

In the end, I have no doubt that it'll work out fine. I mean, to be off prednisone is a good thing. It means my bones will be stronger. My blood sugar will be more normal, as will my blood pressure (although it was already pretty normal). I'll lose weight! My appetite will go back to normal!

But right now, it's sort of like, OK, body, you're getting what you want. Hopefully on the other side of this is happiness!! Prednisone-free life!! That's the goal that I'm working toward. 

But if I fall asleep on you, it's not you. (At least, I don't think so. :-P)







Seven Quick Takes No. 128

7 Quick Takes, health, transplant, writing, fictionEmily DeArdo2 Comments


ICYMI: I wrote other things than the 30 Days series this week! Here's a post on the Four Last Things--in time for Halloween. (Or it was when I posted it!) And part II of my Houston Postcards.


I had clinic on Monday. The X-ray is good, the PFTs are in their normal range, so that's all happy. The biggest happy, though? I got to go off prednisone! Yayyyy!

Prednisone is a steroid that does some nasty things to your body. It keeps inflammation down, and it's widely used in the transplant world. In other types of transplant, people can go off this drug after a few years. In lung transplant, that's much less common. So I knew that there was a good chance my doctors wouldn't let me go off it. But I'm 11 years out, I'm stable....I might as well ask!

"These lungs are basically yours," my doctor told me, so he didn't see a problem with me trying it. I have to go back for lung function tests (PFTs) in December, to make sure that nothing evil is happening in my lungs. But right now, I am off prednisone. 


I'm not going to lie: the first few days of this have been rough. After only seven days, your body adapts to prednisone and makes changes in a lot of ways. I've been on it for eleven years. Tuesday, Wednesday, and yesterday were a bit tough as my body adjusted to being off it, especially in the muscle/joint department. They liked steroids. I'm hoping that now that I have good lungs that are not full of Evil Bacteria, my joints will be happy without the prednisone. (CF people often have a sort of quasi-arthritis--it's not "real" arthritis, but joint pain, stiffness, etc. happens.) I really didn't miss all that insanity, so I'm hoping that they're going to be happy without the pred. 


On Wednesday I got to see one of my favorite singers, Canadian artist Loreena McKennit. If you're not familiar with her music, here's a few tastes: 



She's hard to categorize; sometimes she's labeled "Celtic", sometimes "new age", and sometimes "world", but I just say she's great. She rarely tours, and very rarely tours in the U.S., so when tickets went on sale for her one concert in town, my friend Suellen and I jumped on them.

Our AP English teacher, Mrs. Low, had introduced us to Loreena's Music, with "Lady of Shalott" and "The Highwayman"--so we've been fans for a long time now. (Yikes, 17 years!) Hearing her sing "The Lady of Shalott" in person has vastly added to my lifetime happiness. 


I'm also doing NaNoWriMo! This is my fifth year. I'm writing a story about a girl who enters a monastery. I've been wanting to write a novel about nuns for awhile, but having seen a lot of recently released novels that paint nuns in a less than flattering light made me move this story forward over other NaNo ideas. It also has a strong ballet component, so I'm writing about two pretty rarefied worlds in one novel. (And no, it's not like the ballet in Trouble With Angels. Ha!) I'm going to hit the 10K mark today. 

(If you're not familiar with NaNo: The objective is to write a 50,000 words novel from start to finish during the month of November.) 


As soon as I hit 10K today, I'm watching The Crown on Netflix. Seriously. I love Claire Foy, I love the Royals, I love Netflix....it all works together for pure binge watching enjoyment! (And there's going to be a second season! WOOOOO!) The goal is to have 60 episodes over 6 seasons. So Claire Foy is playing Queen Elizabeth II in the early part of her reign. I'm so excited. Seriously. Royal geek, right here. 

(And Stephen Daldry is directing episodes! He directed one of my favorite movies, The Hours.) 


OK, wow, that's enough fan-girling for one post. Sorry guys. :) Have a great weekend! 

Next week--my October reading wrap post. It's long! It's fun! 

You Get What You Get

health, essays, familyEmily DeArdo2 Comments

or: why I wouldn't do genetic testing on my future spouse

"You get what you get and you don't get upset." I remember hearing that as a kid, and it's a pretty good philosophy when it comes to babies. It annoys me when people say that all they want is a "healthy" baby. So, if the baby is unhealthy, they don't want it anymore? Huh? 

Genetics are a tricky thing. For example, take a look at my family. If genetic worked the way it was supposed to, my siblings and I would be dark haired, dark eyed, and sort of olive complected. This is because we have a father who is 100% Italian. 


Two blondes, one redhead. Two blue-eyed girls, one hazel-eyed boy. 


Genetics don't always work the way the Punnet Squares say, y'all. 

In a very large family, there was no history of CF. No history of babies or kids dying early from unexplained causes. Nothing that would lead to any sort of hint that I would have CF. And in the 80s, you didn't really do prenatal testing, especially in 1981, when my mom was pregnant with me. 

But now, there are more and more people with CF saying, get your spouse tested. In fact, do IVF, so that you can only "choose" embryos that don't have CF. Because, you know, why have a kid with CF? 

Um.....because that's what you get? 

Put in anything genetic. Put in Osteogenesis Imperfecta. Put in hemophilia. Whatever. Take your pick. But just because your genetic tests show that you're not a carrier for one thing, doesn't mean your kid won't have something else. 

Why do we want to eliminate people because they're not perfect? Why are we so afraid of having children that might not be perfect? 

I don't understand it. 

We have no idea if my siblings are carriers for CF. They would have to marry another carrier to have any risk of having a kid with CF (real quick lesson: two CF carriers have a kid--the kid has a 25% chance of having CF, 50% chance of being a carrier, and 25% chance of having nothing to do with CF, genetically, at all.). I don't know if my siblings want to know. But I would hope that they wouldn't be worried about this. 

Take what you get. Take any kids you may be blessed with as the gifts from God they are. Take them as they come. And be happy that you have that child. God works in mysterious ways. Maybe your imperfect child is supposed to make you holier. Maybe he's supposed to teach you something. Or maybe God just knows that you're the right parent for this kid, even if you're afraid to be. 

Be not afraid. Take what you get. And give thanks. 



Why "powering through" illness is a bad idea

health, transplant, essaysEmily DeArdo1 Comment
Not a good idea when you're sick 

Not a good idea when you're sick 

Hillary Clinton is in the news, not because of her presidential campaign, but because she has pneumonia. Apparently, she's been sick for awhile, but the official diagnosis came from her doctors/her campaign yesterday. 

There was a lot of talk on Twitter (and I presume elsewhere on social media) about how women just "power through" illness. "We do lots of things when we're sick!" women were saying. "We're awesome like that!" 

Well, actually, no, ladies. It's not awesome. Trust me. 

I did a fair amount of "powering through" for the first 23 years of my life. And no, I wasn't running for president. I was trying to be as "normal" as possible. That meant school, extracurriculars, summer jobs. I went to school when I had a noncontagious form of TB and was falling asleep in my first period class because I was so tired. I had a summer job the summer after I almost died and spent two weeks in the ICU. I was so desperate to sing in my college choir's big Christmas Festival that I went from the hospital, to class, and then back to the hospital because I finally realized that, yes, I was way too sick to be in class, much less perform in a three-hour concert. 

There were times my college boyfriends had to almost hold me down to keep me from going to sorority meetings, or Student Government events. 

Some of this pigheaded Irish determination was a good thing. It kept me involved, it kept me active, and I had a great time in college. But some of it was really bad. I didn't know when to stop. I worked up until the weekend before my transplant. Seriously. I had to drag myself out of bed every single day, but I was there at my office. The only time I wasn't was when I was in the hospital. I might have come in a little later in the morning, but I was there

After my transplant, this all changed. Partially because I was much more susceptible to illness, including getting illnesses from other people. I had to learn to say No to going to things when sick people were there. I told my friends that if someone was at a party and that person was sick, I wasn't going to go. 

I had to make sure I got enough sleep. This is huge for me. I realized that I needed 8-9 hours of sleep every night. I definitely had not been getting that. And when I was sick, I needed to be sick--and not "power through." Because powering through only made it worse

I had pneumonia this past winter. I was in the hospital for almost a week, and it took me more than a month to recover when I was back home. Pneumonia kills millions of people a year. It's a nasty, nasty bug. And yes, I'm more susceptible to it, and always have been. But people over 65 are in the high-risk group, too--and Hillary Clinton is 68.  

Pneumonia isn't something that you can "power through." There is "walking" pneumonia--a milder case of it. But it's something that requires rest, and lots of it. You feel like you've been run over by a truck. It's Not Fun at all. And if you don't rest appropriately, then guess what? It lasts longer

Ladies, we have to stop "powering through." The world isn't going to end if we're sick. (OK, this might be different if you're the President. Or, even, Secretary of State.) But that's two people in the world. Listen to your body, and give it what it needs! Let yourself heal! Don't put yourself--and others--at risk for being sick. Do the counter-cultural thing, and take care of yourself. 

It's not easy. I know that. I spent 23 years resisting this entire idea. "I can rest when I'm dead!" 

Well, if you don't take care of yourself, you're going to be doing that sooner rather than later. 



Hospital Hair Salons, Part II: Troubleshooting Superbugs!

healthEmily DeArdo1 Comment

You may recall last week's post about Hospital Hair Salons. I got a lot of positive feedback on Facebook and in the comments here about this, so I think it's safe to say that this is an idea whose time has come!

That being said, it's also an idea that requires a wee bit of troubleshooting. Even if it's a great idea (which we all think it is!), there are things that need to be worked out in order for it to be really feasible in a hospital setting.

One of the things we need to consider is the ever present threat of germs. If you're in the hospital, you're....sick. So we have to make sure that people who are sick don't get other people sick, and that people with similar illnesses are separated from each other, if needed (i.e., CF patients. We're not allowed to be within six feet of each other. I'm not kidding. I'm not sure how this works in homes where there is more than one person with CF, but....) 

So, inspired by Piper, I began to dig around on the Internet and found....

portable shampoo bowls!!

Is this not awesome? Adjustable height, so everyone can use it! You have to supply your own water source, but just about every hospital room has a sink, so there you go. Fill up a bucket for the water, drains into the sink. Bazinga! The bowl is tilt-able, so you can use just about any chair with it. Grab one from the nurse's station, or even the ones that are in the room, and there you go (My hospital has chairs that recline in the rooms. I realize this might not be the case in every hospital.). 

This model is $300, but on Amazon, it's $74. That's right. SEVENTY FOUR DOLLARS. 

Add a spray so you can wet and rinse the hair--$5 more. 

Another option: This guy, which is for people in wheelchairs or with limited mobility. I'm not sure if this would be my first choice, but hey, this would work for those in wheelchairs and it's better than nothing. 

To protect the patient and keep water from getting on those areas that can't get wet, add a salon cape: $9.18

So, for the bowl, the sprayer, the cape--$88.18. That's for one "set". Two of them? Less than $180. 

With the portable set up, you eliminate worries about infection spreading among patient populations. Someone can go into the patient's room and wash the hair--or even a parent or friend can do it, if one's available. I wouldn't want my brother to wash my hair NOW, but with a setup like this? I could totally teach him how to wash girl hair. :) Patient privacy is preserved, and everything you need is right there, able to be brought into the room and easily connected. (I'm hoping it's easy. If it's not, then we'd need another system. But it looks pretty simple.)

A patient could request this the same way she requests the Nintendo cart (yes, my hospital used to have a Nintendo cart), or a massage therapist, or the child life people, or whatever. You just ask the nurse to call for it, and someone brings it up.  Easy peasy. 

The hospital doesn't have to build a room or install any equipment, like with the previous idea. This is totally portable, easy to take apart and sterilize, when necessary, and can go anywhere. 

What do you guys think? 





Hospital hair salons: An idea to support mental and physical health

healthEmily DeArdo6 Comments

I know that, when someone says, "You know what hospitals need?" your first answer probably isn't "a hair salon!" 

And, OK, it's probably not the most pressing need in hospitals. I know that. I'm very fortunate to live where I live and have access to world-class hospitals that are fully stocked with vital equipment, supplies, drugs, and staff. I don't have to worry that the hospitals don't have an X-ray machine, or lack sterile needles. 

But more and more, hospitals are focusing on providing not just the basics of health care, but providing a more holistic approach to care. The hospital I'm at most frequently has a massage therapy department, child life specialists, play groups for all ages, teachers who tutor students, and evening entertainment is often scheduled. Even in adult hospitals, there's a focus on providing creature comforts, like lots of TV channels, increasing the quality of the food served to patients, and improving rooms so that patients have more privacy and comfort. 

I think having a hair salon-like area would fit right into this scheme at many hospitals. 

Think about a regular week for you. How often do you shower/wash your hair? And if you're like me, you don't just take baths for utilitarian reasons. You take them to relax, unwind, or just enjoy the hot water and bubbles. 

When you're in the hospital for a long time (as in, more than three days), basic things become a lot of work. Things like being clean, that people in the real world take for granted. Seriously, when was the last time you got in the shower or the bath and thought about how you would be able to wash yourself if you had medical equipment and IVs attached to you? How could you wash your hair if you couldn't get one of your arms wet (Or either of them)? Or what if you couldn't get into a tub or shower at all, because you have chest tubes coming out of you, or you were getting constant IV infusions? (We won't even talk about things like shaving your legs. That's just well-nigh impossible.) 

I have, in the course of 34 years, been subjected to every kind of hospital hair washing arrangement that can exist. Let me count the ways:

1)  The communal bathroom: where the floor has one bathtub, which you have to watch like a hawk to get. Then you lock yourself in--with a parent, or someone to help you, because you can't wash your hair yourself. Mom would wrap Saran wrap around the parts that couldn't get wet, try to tape it up with medical tape (I say "try" because the tape wasn't really designed to be sticky in the humid conditions of a bathroom), and then wash my hair while I tried to keep the improvised "dressing" from getting wet. The benefit to this was that at least I could wash my body.

2) The "bed basin" method: you stay in bed, and a small, inflatable basin (it basically looks like a kiddy pool for Barbie dolls) is put under your head. Then you can get your hair washed, you don't have to move, and everything stays dry. The problem is, you didn't wash anything but your hair, and if your hair is long, combing it out after this method is a disaster. It's also hard to get all the shampoo out, because you're working with a small pool of water. So you don't get really clean hair. Meaning, you have to do it again, soon. Boo hiss. 

3) The lean over the sink method, forwardterrible. Same issues as above, water gets everywhere, it's a general mess, and if you have anything on your chest (like, say, my port), you are frantically trying to keep it dry. Not good. 

4) The shampoo "cap": It works in a pinch. But generally your hair looks and feels awful after this has been used. It looks like a shower cap with shampoo "built in". You add water and there you go. Not good. The much better option is dry shampoo (which is a godsend, let me tell you.). 

5) The lean over the sink method, backwards: At least you don't have water in your face with this method, or running all down your front. However, it's rather painful if you have anything attached to you--and the sinks aren't usually at a good level. I remember being put on a tall chair from the nurse's station (on wheels!), then titled back. Water, water everywhere. 

6) The "Shower seat" method: This involves taping yourself down, again, so that what's supposed to stay dry, stays dry, and you basically make a mess of the bathroom. You sit on the shower seat, while you use a hand held shower head to wash your hair. It's not the best method. (Mostly because you have ZERO privacy. At all.) 

You can see, all these methods are sort of terrible. They are difficult, they are messy, they take a lot of time, and they are not mentally or physically beneficial. I loathe washing my hair when I'm in the hospital. It takes--not kidding--about an hour, to gather all the materials, to tape myself up, and then try to do it with minimal issues for the staff, because they have enough to do without making sure I have enough towels. And we won't even talk about the hair dryers that you're given. (My hospital doesn't like you to bring in your own hair dryer. Strange, but true.)  

Some fantastic nurses try to work a hair washing into the day, coming in when they have down time. And I appreciate this. But, again, there's usually not a lot of privacy. I know, I know--nurses have seen everything. But I'd like some mystery left in our relationships, here! 

I want you to image with me for a second. Imagine you are sick. You feel like crap. It takes a huge amount of effort to do anything, including go to the bathroom. You know you should take a shower, but it takes a ton of effort. You know your hair looks awful, but you can't wash it on your own. So on top of feeling like crap, you also look like crap, and this makes you feel worse

What we need are hospital hair salons.

They do not have to be fancy. They could be one or two salon-style sinks and chairs, where patients could lean back--and not worry about hurting themselves or the equipment--and have their hair washed well, with clean water, in a sink that is appropriately deep. So the shampoo isn't getting the hair dirty again, and you're not using dirty water, and everything that needs to stay dry is staying dry! The body isn't in a weird position--it's supported by the chair. A towel cushions the sink neck rest, just like at a salon, so water is absorbed and not running down the back of the chair or the patient.  

You need to have someone who can wash the hair, comb it, dry it--with a good hair dryer, not one from 1970. That's it. No styling involved (unless, you know, someone really wants an updo for that meeting with the surgeon in the morning). Just clean, combed, and dried hair that will last longer and look better than anything heretofore seen. For the rest of the body, the patient can get into a tub and get clean, without worrying about hair or getting things wet. (In my hospital, each room now has a rather shallow tub. It's not meant for bubble baths, but you can get in and out very easily, and you can keep things that are on your chest or arms dry. It's revolutionary, I tell you.) 

You wouldn't need professional hair stylists, just anyone who knows how to give a good shampoo and can work a hair dryer. Instead of it taking an hour, it could take 15 minutes. Nurses wouldn't have to wash patients' hair anymore (with the exception of very sick patients who couldn't be moved). Parents wouldn't have to do it. I always feel so much better after a bath, and having clean hair is a great thing. I hate the feeling of dirty hair. (And really, how hygienic can that be?)  

A very quick internet search reveals that a shampoo chair costs range widely, but you can get one for under $200.  A porcelain shampoo bowl costs around $300 (plastic knocks the price down about $100.) Hair products (shampoo and conditioner) wouldn't have to be expensive--you could even use the hospital stuff, or whatever the patient brings with them (yes, I bring my own shampoo to the hospital.) A decent blow dryer? $50 or so.  So let's say $600 per setup, to give us a cushion. $1200 for two. (Materials that can be sterilized/wiped down between patients, to keep things appropriately clean, are tantamount, so that might force a certain material over another.) Obviously you'd have to have plumbing arranged appropriately, and a space that's dedicated to this. But when you think about how hospitals have showers in the ICU for parents/family members to use, it's not too crazy. 

$600 is not chump change. But the benefits to patients, families, and staff would be incredible. I've been in the hospital for a month at a time.  There are people who spend months in the hospital. How would you feel if you weren't really able to wash your hair--or have someone else do it properly--for months? You'd feel pretty gross after awhile. I guarantee you. Dry shampoo only does so much. Sink baths are cute for babies, but not for anyone else. 

When I floated this on Facebook, I got a huge responses from women who have been in the hospital and understood this. But it wasn't just patients--it was parents, too, who have boys and girls who spend lots of time in the hospital, and thought this would be a good idea. I was actually surprised by the amount of people who liked this idea.

So the question then is--how would we actually get these in a hospital? What are the logistical issues that would keep a hospital from having a set-up like this? 

This isn't just for kids. It's for anyone who's in the hospital for a long time. You want to feel human, even when you're sick. A hospital hair salon (or blowout bar, I guess this is) would do a lot to increase patient well-being, both mentally and physically. 

Can we make this happen? 




The Fight for Joy

essays, health, transplantEmily DeArdo4 Comments

The tagline of this site is "Celebrating Ordinary Joy." And that's what I try to do on a daily basis--to remember that this life is so incredible, such a miracle, that everything is Joy. The brown bananas in the freezer awaiting their transformation into muffins; the roses and sunflowers in a vase on the counter; even the trash bags that need taken out. Everything is a gift. 

But that doesn't mean it's easy. I never wanted a Pollyanna tag line, where we play the glad game, and blithely ignore realities. Sometimes, reality is hard. 

Last week, I felt as low as I've ever been. I tried all my normal things--journaling, napping, bubble baths, talking to friends, a holy hour, a weekday Mass. When I go to Mass, no matter how crappy I might feel, usually the consecration floods me with peace. Not on Friday. On Friday I was totally just at Mass. I didn't feel a thing. It was like robot-me. 

I talked to my therapist (Most people, post-transplant, see a therapist. It's par for the course.) I basically didn't talk--I sort of fell apart. I was a mess. I wasn't sleeping, I wasn't eating right, I was forgetting conversations I'd had two days ago--and I don't do that--and I had no idea why. 

Joy was really far away. Incredibly far away. I thought about the tagline and I laughed. Joy? Really? JOY right now? 

No Joy. 

On Saturday, I was very gentle with myself. I read a book suggested by Elizabeth--The Awakening of Miss Prim--and I re-read the Restore workshop pieces. I went to Mass. I made dinner. I slept when I could. 

Today, I had a doctor's appointment. It was my normal clinic visit, but I was anxious because I didn't know what was going on with me. I wanted to find out. So I spilled out all my symptoms in a flood of words. 

The doctor and the nurse listened, and we figured out what it is. It's nothing major--it's just my body adapting to different drugs, and readjusting hormone levels and all those delightful things that happen when you're taking very powerful medicine. 

So my body has to readjust--and this will happen both physically and mentally. As it readjusts, things will go back to baseline. But until then, it's measures to fix the symptoms--sleeping when I can, getting good food and exercise, having the A/C set just about arctic. :) 

I'm so happy that I'm not crazy. 

But during those foggish days, days when joy seemed so far....it was hard to remember to look for the ordinary joy. 

But it's there. It's always there, even when I couldn't see it, or couldn't feel it. 

When it's elusive, hang on. Keep looking. Find that one thing. It's there. And that one thing can be a crack of light that you need to keep looking, keep seeing....what keeps faith. 




Seven Quick Takes No. 115--Not to go all Boromir on you....

7 Quick Takes, health, JeopardyEmily DeArdo1 Comment


linking up with Kelly and the gang. 

There is logic in that title. Really. :) 

So last week I was watching Army Wives on Netflix (Yes, sometimes I watch soap-ish TV. DO NOT JUDGE.) There was a kid with CF who was brought into the ER with a collapsed lung.

Now, to treat a collapsed lung, an interventional radiologist (so no, not just anyone) has to insert a chest tube, in order to reinflate the lung. It requires cutting. It requires stitches. It requires boxes. It basically sucks. It's my second-least favorite thing to have done, medically. 

(What's first? A pH probe. Seriously. Don't ask. 

Oh, you asked?  OK. 

A pH probe involves sticking a tube up your nose, down your throat, and into your stomach. And the tube sticks to your face and dangles outside of your body because it's attached to a stupid meter. It sucks. A lot. And it hurts. A lot. Basically, it's a tool left over from the Inquisition.)

So anyway, while watching the show--the kid had no tube left in. It was basically, we stick in a tube! The lung reinflates! Let's go home tomorrow! 

Um, no. 

Hence, the below photo, which I created to express my displeasure. 


One does not simply not keep a chest tube in. Sorry. And to remove it also requires an interventional radiologist. Yeah. Stitches, remember.


So, please make the above meme a thing. I think it's awesome and the Internet needs it! 


I have a clinic appointment on Monday, so I'll report back with the results when I get them. Oh what joy, oh what rapture. :) The nice thing about clinic visits in the summer is that the rush hour traffic is significantly better. 


The recap from this week, in case you missed it: 

Summer scribbles: A taste of summer (My strawberry salad recipe) 

Postcard: Chicago

Catholic 101: Apostolic Succession


Also, I got a picture with this guy:

You know, some random Canadian. ;-) 

The dress is from Shabby Apple. It looks a bit better on TV. I think. Since the photos are taken during one of the commercial breaks, you don't really have time to primp. 


The show airs on July 18th! 

I will also be on Jen Fulwiler's Radio Show that day, to tease the episode. :) If you have Sirius, be sure to tune in! I'll have more info as we get closer.


Another thing about that photo? The microphone pack is attached to my bra strap. Really. They have a guy who attaches all the microphones. He asks before he attaches it. And he's very professional about it. But that's where the microphone pack is. They remove it before they shoot the "let's all talk at the end of the show" thing, so you won't see it. :)