Idiopathic Hypersomnia and a Sliver of Hope

I first became sick four years and one week ago and have since received countless diagnoses.

Cardiogenic shock. Translation – total system failure (or, as I like to call it, temporary death) caused by heart failure. Dilated cardiomyopathy. Translation – my heart was too large and too weak. Pleural effusion – fluid in my chest cavity. Renal insufficiency – kidney failure. Chronic kidney disease – after my kidneys started working again they became permanently diseased courtesy of a necessary medication. Diabetes – elevated blood sugar levels that cause your every thought about food to be considered through a new lens as irritating as a gnat that you can’t smack. Edema – swelling due to fluid build-up. Anemia – reduced red blood cell function. Hypothyroidism – reduced thyroid function. The list goes on.

One might think I would hope to end the slew of diagnoses, but not when another condition has gone unexplained for years. I have struggled with debilitating chronic fatigue for nearly three years now – THREE YEARS. I’ve dreamed of pinpointing its cause and have gone to great lengths in pursuit of a diagnosis. In my desperate attempt at solving this mystery, I admit I have hoped for positive HIV test results, hepatitis, multiple sclerosis and other diseases and conditions that make most people shudder.

A cure would be nirvana, but I would settle for a concrete cause – a diagnosis that ascribes science and legitimacy to the way I have felt all of this time. An undiagnosed debilitating condition is treated as frivolous by many and is absolute torture for the person affected.

My latest answer-seeking endeavor has been with the Emory Sleep Center here in Atlanta to follow up on an abnormal sleep study I had a couple of years ago. My new doctor is an expert in the field of sleep medicine and seems highly sympathetic to my situation. I participated in a second sleep study a couple of weeks ago, which was followed by a full day of sleep testing that was as close as I have gotten to Chinese water torture – more on that another time.

I haven’t seen my doctor for follow-up yet, but I did get my hands on the report. And halleluiah, there was indeed a diagnosis right there at the top: Idiopathic Hypersomnia. The earth-shattering translation goes something like this: “We have found that you are abnormally tired all of the time and require an extremely excessive amount of sleep, but we have no idea why.” Reading that felt like I had finally found the location of the elusive holy grail, but someone had replaced it with an empty red solo cup.

However, to put my cynicism aside for one moment [wait for it], I do maintain hope that my doctor will have some suggestions when I see him in person soon. I don’t really have another choice but to hope, do I? The good news is that with a diagnosis – no matter how vague – comes the possibility of treatment. Without that tidy diagnosis code that someone at my insurance company can type into a little box, all progress ceases and I look for the next specialist. So with my diagnosis code in-hand and an appointment coming up soon, I choose to be hopeful in spite of the bitter disappointment that has defined my last thirty-four months.

Professionalism and Drugs

I learned last week that it’s difficult to simultaneously be professional and take a bunch of drugs. Perhaps that’s been common knowledge for decades when it comes to illegal drugs, but I’m talking about the plethora of prescription meds I take every day.

When I’m physically at my workplace, it’s easier for me to maintain my regimen. Almost all of my coworkers know my story and expect to see me popping pills at any given time. Many even know to stay away from my cubicle when my back is directly to its opening, since that usually means I’m injecting insulin into my exposed gut. This makes it pretty easy to conduct my business throughout a day of conducting business.

However, travel and off-site meetings are a bit of a different story. I went down to my business school alma mater – wahoowah! – last week. It was a great trip and I was able to visit with some old (in more ways than one!) professors and interact with the students. The best part of the trip by far was meeting a very senior executive at my company (“Elizabeth”) and seeing her speak to the students. After the speech, a few colleagues and I were invited to lunch with Elizabeth and a handful of Darden professors and senior staff, including the Dean. It was a pretty impressive group in a pretty fancy private room during a pretty formal meeting – as in, one did not get up and go to the bathroom in the middle.

This could present a problem for a few different types of people. Those with incontinence (or bladder weakness, as I recently learned it’s called) might have trouble in this situation. People with Crohn’s Disease could find themselves in some deep…well, you know. And it's a challenging situation for an insulin-dependent diabetic that also takes oral medications SIX (yep, it has gone up) times a day.

Going into the lunch, I knew the plan was to discuss topics one and two, then eat, then discuss topic three. If the plan had been to eat first, I could have injected beforehand, but I didn’t want to risk dropping on the floor during the first two discussions (though that would have been one way to ensure that Elizabeth remembered me!). So in I went for the pasta salad and other glucose-elevators typically found in these catered situations and willed my pancreas to step up to the plate just this once. When it came time to take my next set of pills, I quietly reached into my bag, pulled out my pouch and was just emptying that timeslot’s meds into my hand (fortunately, it’s more socially acceptable to use Purell in public) when the conversation moved to the Dean, who was seated right next to me at the head of the table. So there I was, with a handful of pills in one hand, my pill organizer in the other and my pouch of goodies spilling into my lap, when the whole table of highly credentialed people turned to face the Dean – and me.

I’m sure no one noticed the pharmacy in my lap; that’s not the point. The point is that it’s difficult to do what I need to do sometimes. I guess it really boils down to something I never fully appreciated until recently: it’s hard to be different. And it’s a pain in the butt to take a handful of pills at six regularly scheduled times, to inject myself with each meal and to prick my finger four times a day.

But, as I frequently remind myself, it’s not as big of a pain as the alternative. So I’ll take it. And one day when I’m not the most junior person in every meeting, maybe I’ll get more comfortable in my drug-dependent body.

Old People Are My People

Old folks have many interesting traits and behaviors, many of which I’ve had the opportunity to study closely over these past 14 months. As you know, I’ve been exposed to this population with an abnormal level of regularity, given my 29 years of age. When I was first in the CCU, I think I was literally the only patient under eighty. During my first visit to the cath lab, I determined I had more teeth than the rest of the patients combined. And at cardiac rehab, there were a few youngsters (in their fifties), but I brought down the average age quite a bit each time I showed up.

One of the most entertaining parts of rehab was observing the staff attempting to communicate with my fellow exercisers, as the fifty-plus crowd is not known for its keen hearing. On my first day, I met a very sweet man we’ll call Dave, who is probably about sixty-five. We became fast friends as we walked at tortoise-like speeds on the treadmill and moved slightly faster than molasses on the stationary bikes. He was my exercise buddy my first few days there, until the rigor of my work out mercifully surpassed his. [After all, age difference aside, I have a healthy new heart – he does not.] Anyway, we remained buddies but no longer followed the same circuit around the gym, so I kept an eye on him as I progressed through my work outs. At least once a day, one of the staff members would instruct him to check his heart monitor leads or ask him a question and receive a blank grin in response. Poor Dave, it turns out, can barely hear a thing. Watching this happen again and again got me wondering if he ever heard anything I said. Were we really buddies those first few days, or did he just wonder why the dumb blonde girl was moving her mouth so much?

Thankfully, I only came across the next example of unique geriatric behavior once. This old fart – quite literally – was blatantly passing gas during his entire work out. And guess who kept finding herself at equipment adjacent to him…ME. When he walked on the treadmill, I was directly behind him. When I was on the air bike (you know, the one that has a fan that blows air while you pedal?), he all but planted himself right in front of me so the fan was blowing his gas into my face as I gasped for air. Gross.

The most enviable thing about old people is their total lack of insecurity. They know who they are, and for the most part don’t care what anyone else thinks – about their clothes, about their opinions…or about their Zumba skills. Several weeks ago I attended a diabetes seminar at the hospital, the theme of which was the importance of exercise for diabetics. Not surprisingly, I was one of two people under 60 in attendance (most were well over 70 and quite overweight). Before the speaker took the stage, the audience was treated to two brief yoga lessons, in which the instructors appropriately tailored their exercises for the geriatric crowd. To really drive home the message that exercise can be fun, a spunky probably-twenty-one-year-old Zumba instructor bounced onto the stage next and insisted that the crowd participate. If you aren’t familiar with Zumba, it is basically a combination of Latin dancing (think lots of hips) and hip hop moves (think lots of booty shaking). Now, bring yourself back to the 70+ audience. It was one of the most entertaining and ridiculous things I have seen in a long time – I spent the entire fifteen minutes wishing as hard as I could that someone could be there to witness it with me and cursing my antiquated phone, which lacks video capability. There was not one audience member whose movements resembled those of the instructor, even a little bit. But they didn’t care, for their inhibitions disappeared decades ago.

Things I Never Expected To Say... But Did

My life has obviously changed a lot over the past year, and a lot of things have come my way that I never expected. Among these things are some phrases I never thought I would utter… Below, in no particular order, are the top ten biggest surprises to have come out of my mouth.

1. “Hold the cheese, please.”
Cheese is one of my favorite things, especially when it’s melty. I became aware of the unhealthy relationship I had with cheese when every single card I received after my transplant somehow welcomed me back to the pizza-eating world. People often ask if I’m still on a strict low-sodium diet. I’m not, but I continue to watch my sodium and minimize my cheese consumption because I’m now at increased risk for high cholesterol and other heart-related problems.

2. “My cardiologist…”
End that sentence with anything and it makes the list. I don’t know anyone who expects to require the care of a cardiologist in her twenties.

3. “Hang on a second while I inject myself.”
I’ve never been particularly fearful of needles, but I definitely did not foresee sticking them into myself on a daily basis. Fortunately, my insulin is supposed to be injected into stomach fat, which is in great supply at present.

4. “I live in New Jersey.”
Okay, this one goes back a little further than the past year, but I still haven’t gotten over it. You don’t grow up in Atlanta and spend ten years in Virginia, then anticipate a move to the Dirty Jerz…not that there’s anything wrong with it!

5. “Check out my fake cleavage.”
For the record, I never expected to utter this phrase sans “fake” either (and definitely have not)! My chest scar makes it look like I have some serious cleavage, though, so showing it off is my newest form of entertainment.

6. “I’m nocturnal.”
I have been sleeping from 2 or 3 a.m. until 12 or 1 p.m. lately, with a brief intermission to take my vital signs and pills first thing in the morning. This is obviously not going to jive with my impending return to work, so I am striving to correct this owl-like behavior now.

7. “I was petting my dialysis dressing because I thought it was my parents’ puppy.”
This was never expected on several levels, but nevertheless it came out of my mouth the other day when reminiscing with my wonderful CCU nurses. As you may have read or might remember, I had some pretty bizarre hallucinations a couple of weeks into my first hospital stay last year.

8. “I need to take the elevator.”
I still use elevators for multiple flights of stairs, especially when my heart rate is lower, like when I’ve been sitting for a while. However, I hope not to say this anymore when needing to go up just one or two floors – at least not for MANY years.

9. “Pleeeeze leave the Foley catheter in for one more day.”
The day after my transplant, getting up to use the bedside commode felt too strenuous, so I begged the nurses to let me keep my catheter in a little longer…not a request they heard very often!

10. “Yum, this sugar-free cookie tastes great!”
First of all, I never could have predicted that I would one day voluntarily consume sugar-free cookies. Enter: Diabetes. Secondly, I never dreamed I would actually think one tastes great, but I found these magical cookies at the store this week. The brand is Murray – check them out at murraysugarfree.com if you are interested. I’ve only had the Pecan Shortbread cookies, but I intend to sample other varieties soon - stay tuned!

Signs of Fall

I can’t believe it’s already October! It seems like we went from the dead of summer to chilly fall in a 24-hour period, which I appreciate. Fall is my favorite season, and last year I spent a good portion of it in the hospital. This year, I intend to enjoy this awesome cool weather by spending lots of time outside.

Unfortunately, the American Heart Association 5k walk that was scheduled for yesterday was postponed until later this month because of flooding. It was a big disappointment, but at least now I have more time to get stronger and continue to nurse my foot. Plus, I got some new cushiony kicks to hopefully prevent future foot injuries that I need to break in. They make me feel like I’m walking on spring boards.

My friend Marguerite is sort of rabid about making t-shirts for various events, so she created awesome “Team Andrea” t-shirts for the occasion. We decided to spend some time outside and sport our t-shirts yesterday, despite the postponement.

In other news, I’m now about ten and a half weeks out from surgery and have shown zero rejection in my last several biopsies. I have one more bi-weekly biopsy in a week and a half, then I will only have them once a month – a huge relief. My biopsies are particularly difficult because I apparently have very small veins. I told my cardiologist that’s the daintiest part of my body.

My latest excitement is the development of diabetes. I wasn’t responding to the meds the way the doctors expected, so they tested to see if my pancreas is working. It turns out, my pancreas seems to be working part-time, leaving me with an unusual sort of hybrid of type 1 and type 2 diabetes. Having one of the more straightforward versions is just too boring for me, I guess. I like to keep things exciting. Apparently my pancreas was damaged either when I had multi-organ failure last year or maybe during transplant. So we are experimenting with meds to see what works best. Ideally, I won’t require insulin over the long-term, but right now I inject myself once a day. It’s no fun, but I’m getting used to it. It’s not nearly as scary as I had expected.

My biggest news is that I’m planning to return to work on November 1! I’m very excited about resuming my normal life and using my brain again!

Even as I’m so excited about regaining some normalcy, I remember that so many others are in different stages of this disease. One of my heart failure buddies is on hold (not working, not feeling good), waiting to see if her own heart recovers and she can avoid transplantation altogether. Another just got an LVAD (left ventricular assist device) put in a couple of days ago to bridge her to transplant. Yet another young woman I know in Canada has been awaiting a heart for over a year. I hope that by sharing my small victories and bits of progress, I can reassure these friends that things will get better. I’m a different person than I was a year ago – you will feel good again one day, too.

Now, I’m off for a stroll in the crisp fall air…