Apr
16

Have You Had Your Conversation?

Good morning! Today is the 8th annual National Healthcare Decisions Day (NHDD). NHDD “exists to inspire, educate and empower the public and providers about the importance of advance care planning. NHDD is an initiative to encourage patients to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be” (source). It is an issue that I happen to be passionate about.

NHDD_logo

NHDD was started by an attorney in Virginia and went nationwide in 2008. The purpose is to focus attention on and provide information about advance care planning, and encourage folks to have conversations about their wishes with loved ones.

Steve and I made our advance directives several years ago. With surgery approaching next week, I rehashed some of the salient points with him, to make sure that if something went wrong he had my wishes at the front of his mind. Not to catastrophize, but sh*t happens and I’ve seen too many worst-case scenarios not to be prepared.

 

(Source)

ABC Breaking US News | US News Videos

Whether you’ve been intending to complete an advance directive or you’ve never heard of one, I encourage you to spend some time today and get additional information. You can even complete an advance directive online through an organization called Five Wishes if you live in one of 42 states where it is recognized. Yes, it costs $5, but I think it is worth every penny to have your wishes honored (which to me is priceless).

There are many, many resources about advance care planning, but here are some good places to start:

And please feel free to leave questions in the comments section of this post. I will do my best to get them answered!

advance_directives

 

Thank you for starting the conversation!


Apr
14

We Must Do Better

Dear Colleagues,

I have a request. And it isn’t a small one.

But it’s a crucial one.

You see, I work in an inpatient hospice unit. Inpatient hospice signifies that patients require a level of care that cannot be managed in the home setting. They must have active symptoms to qualify for inpatient care. It’s basically a “hospice ICU” in that we are constantly titrating drips and pushing meds and doing everything we can to keep our patients comfortable. We’re not trying to save lives but we’re certainly trying to make them feel better…and in a way, that’s saving lives too. It’s a busy, busy place.

I’ve been noticing that every so often (too often), I admit a patient from another facility whose condition is appalling. Not because they’re dying. Because they were made “comfort care” in a hospital two days ago and yet they arrive to us covered in defibrillator pads and EKG stickers. Because they were living in a nursing home or assisted living facility with visiting hospice care and they come to us with pressure ulcers because the staff deferred skin care to the hospice nurse who only comes once a week. Because they have been incontinent for days and sitting in their own urine to the point that their perineum is excoriated and putting in a Foley catheter to protect their skin causes excruciating pain.

I know being a nurse is exhausting. I know working on a hospital unit or nursing facility means a heavy workload and way too many patients. But I’m begging you to pay as close attention to the ones who are dying as you do to the ones you are trying to keep alive. I know the temptation is to assign your “comfort care” patients to the nurse who has the most difficult group of patients – I’ve actually heard charge nurses say out loud: “Oh they’re comfort care, so they won’t need anything. They’ll be easy and you can focus on your other patients.”

No.

The fact is that if your patient is comfort care and you are doing your job, you’ll be more busy. You’ll still be rounding on your patient regularly, remaining vigilant about any symptoms that need to be addressed.You’ll be providing compassionate care to families, acknowledging that even your worst day at work pales in comparison to their worst day ever. You’ll be advocating to providers for better pain control, or more interventions for dyspnea. You’ll be working your ass off to help your patients die with dignity and comfort.

I’m not trying to tell you how to do your job (but I kind of am). Please pay attention to those patients nearing the end of their lives. DNAR means “Do not resuscitate” – it does not mean “do not provide care”. Many of them won’t make it to inpatient hospice. They won’t be stable enough to transport, or their families may not wish to have them moved if they are actively dying, or there won’t be a hospice bed available. We all have to pitch in. We all have to provide excellent end-of-life care, no matter where we work.

We can do better. We must do better.

Thanks for hearing me out.


Apr
08

The Liver Diet

With my surgery fast approaching, last week was the start diet for my preop “liver reduction diet”. The idea behind this diet is that obese people tend to have enlarged livers due to increased glycogen storage (thanks to all those carbs) and fatty deposits. By reducing overall caloric intake (carbs especially), the goal is to shrink the liver as much as possible because it has to be moved out of the way during surgery. The bigger the liver, the higher the risk of damage. The liver diet is also intended to mentally and physically prepare you for postop eating, which is reduced in volume and calories and features frequent high-protein meals. Plus, the liver diet also tends to result in more preop weight loss, which is always helpful during recovery.

Searching for these diets online, every bariatric program’s guidelines are slightly different, but the concept is the same. Here is my surgeon’s program:

  • Weeks 1-2: Two protein shakes a day, two high protein/low carb snacks, and a “lean and green” dinner. Shoot for 64 oz of water daily. I am also allowing myself one serving of fruit a day, which I usually mix into my morning protein shake for better flavor.
  • Week 3: Five protein shakes a day. Shakes and clear liquids only the day before surgery.

Overall, this has been rough going so far. Getting used to eating such small amounts overall has left me hungry and exhausted – I feel almost flu-like. I’m sure as my stomach shrinks it will get easier, but I am so run-down. Working 12-hour shifts during this adjustment period hasn’t made it any easier, but I gotta make some money before I take unpaid time off. On the plus side, I’ve been doing this less than a week and I’m down four pounds. I know it’s not a healthy thing to do in the long-term but I am under the guidance of a physician and this is for a specific purpose. I just wish I wasn’t so darn tired…

I have been really strict about not “cheating” because I know myself and I know how easy it is to turn into a gorge session. Yesterday our manager ordered pizza for the staff working Easter and it took all I had to say no, especially when my co-workers said “just one bite” wouldn’t hurt me. Frustrating, to say the least. I’m realizing more and more how complicated my relationship with food has gotten over the years and how difficult it is to help people understand that just one bite is not just one bite for people like me.

In the process of going through this experience, we have actually found some really yummy “lean and green recipes” for dinners. The guidelines are similar to a ketogenic diet (except for the high-fat part – I’ve tried to find low-fat variations). I’ll try to put together a list of some of our favorites.

So the verdict overall? This is really tough but it’s also temporary. And I’m setting myself up for a better experience during and after surgery.


Apr
06

Weight Loss Surgery: The Preop Phase

One of the aspects of this experience that I really appreciate was how thorough the bariatric surgery preop approval process was. It made me feel confident that it wasn’t just about the $ for my surgeon. Even more importantly, it showed me that I could see this through. The number of appointments and evaluations I had to get through in the midst of school, work and clinical, was a little bit nuts. But I did it.

Did I bitch and moan along the way? Perhaps a little. 😉

Of course, part of the reason this experience was so detailed is because insurance requires it. Since this is considered an elective procedure, there are a lot of hoops to jump through to demonstrate you’re not too unhealthy to have the surgery in the first place (ironic, no?). But regardless, I feel much better about going into fairly major surgery knowing that we have prevented potential complications as much as we can.

Here is a run-down of my preop life, in calendar view:

  1. December 18, 2014: Attend an information seminar led by my practice’s case manager and one of the surgeons (the surgeon I ultimately chose to do my procedure). Learn about insurance requirements and the different types of surgery available. S comes with me and tells me he will support whatever decision I make. What a guy.
  2. January 21, 2015: Initial consult with the surgeon to talk about my options. We’re weighing SIPS versus sleeve gastrectomy. While I’m there, have labs drawn and get an ECG and chest x-ray done at the neighboring hospital. Also meet with the case manager to discuss the entire process, step-by-step.
  3. January 29, 2015: Tell my family that I’m planning to undergo weight loss surgery. Get nothing but love in return. I am a lucky lady.
  4. February 4, 2015: Seven-day food diary review with the physician assistant in the office. We discuss some of the changes she recommends I make now. Also find out during this visit that I had an abnormal ECG, which means I’ll have to get a cardiologist to clear me before I can be approved. Rats.
  5. February 12, 2015: Evaluations with the in-house nutritionist to talk about the pre-op and post-op diet requirements, and with a psychologist to make sure I can cope with the lifestyles changes I’m going to face. Also fill out two psych tests to make sure I’m not (too) crazy. 😉 Accomplish both evaluations in one day. Fun.
  6. February 18, 2015: Initial evaluation with cardiologist. He thinks the ECG was probably due to “low voltage given [my] body habitus”. In other words, I was too large to get a good signal. But just to be safe, we schedule a stress test and echo for later this month. This is also supposed to be the night I have my sleep study, but then it starts to snow and all of North Carolina goes into lockdown mode. Sleep study is rescheduled.
  7. March 4, 2015: Long-awaited sleep study to determine if I have obstructive sleep apnea (OSA). I’d been diagnosed with mild OSA years before but never got a CPAP because insurance wouldn’t cover it at the time. I have a feeling it’s worse these days.
  8. March 12, 2015: Undergo EGD (aka esophagogastroduodenoscopy…say that five times fast) with my surgeon. Nothing too scary  in there. I’m cleared for surgery from a GI standpoint.
  9. March 13, 2015: All required testing for insurance purposes is done. Case manager submits me to insurance for pre-approval and tells me it will take about 14 business days.
  10. March 17, 2015: Stress test and echo. Cardiologist says everything looks good, except for my markedly reduced exercise capacity for a woman my age. No sh*t. But I get my cardiac clearance.
  11. March 18, 2015: Sleep study #2. Sleep apnea was confirmed (much more severe this time around), so now I come back to be fitted for a CPAP and figure out what settings I will need at home. Find out I have to meet with the sleep center medical director (who also happens to be my surgeon) to review the results before I can be scheduled for surgery. He is booked for two weeks. Start to panic that I won’t be able to schedule surgery during the very narrow window I have in between semesters to get through it and start to recover. Want to cry. Sleep center manager sees my distress and fights for me to get an appointment by the weekend.
  12. March 19, 2015: Receive notification that insurance has approved my surgery! What a relief!
  13. March 21, 2015: Early Saturday appointment with sleep center director/surgeon to review my sleep study results. He knows I’m pressed for time as well and his medical assistant flips my visit to a results review – to go over all of my diagnostic testing at once. It’s the last step before I can be scheduled. I love these people. Before I leave he checks his calendar and gives me a date: April 23. I could kiss him.
  14. March 23, 2015: Get a phone call from the surgery scheduler that I am officially on the books for 4/23. They email me preop instructions and we pick a date for my pre-op appointment with anesthesia. One month to go.

I’m exhausted just re-creating this list! Let’s just say I’ve already met my out-of-pocket maximum for the year, and I haven’t even had the surgery yet. Lots of ups and downs over the past few months, but when all is said and done I’m glad they were so thorough.

Next up: the dreaded pre-op “liver diet”. It’s only temporary, right?


Apr
03

About My Choice

By now you’ve had a few days to digest my big news (pardon the pun). You may have mixed feelings about it. Trust me, I’ve been preparing for this experience for four months now, and I have my moments.

If you are curious, the exact procedure I will be undergoing is called a SIPS (stomach intestinal pylorus-sparing surgery). It is a fairly new surgery that pairs two procedures: the vertical sleeve gastrectomy and a modified, less technically-complicated version of the duodenal switch. A version of this procedure was first trialed in Spain, with amazing results and few complications. It is currently offered at five centers across the U.S. and thus far outcomes have been phenomenal. By combining both restrictive and malabsorptive processes (but avoiding some of the malabsorptive issues common with a gastric bypass), it is being touted by some as the future of bariatric surgery. My surgeon has been doing these since last year and has been really pleased with the results. Granted, it is new-ish (first performed in 2007), so long-term outcomes are not yet available.

Check out this video for more detail (and somewhat gross surgical footage, for those of you who enjoy that sort of thing ;-):

I’ll post more about the preop process I had to undergo, as well as some of the postop requirements, in the next few weeks leading up to surgery. Rest assured that this will not become a personal diary about my weight loss journey. But I also believe that this experience is an important part of my overall journey. And being transparent about the struggles as just as important as celebrating the victories.

In the meantime, tell me what you think! Do you know anyone who has undergone weight loss surgery? How did it go? What are your thoughts on this process? I want to hear from you.


Mar
30

The Emperor of All Maladies: The Documentary

You may remember my awed review last year of Siddhartha Mukherjee’s incredible book The Emperor of All Maladies.

Turns out Ken Burns has been working on a documentary of the same name, based partially on his work.

Pardon me while I squeal like a kid in a candy store. (Yes, I am aware that I am a weirdo).

(Source)

Airing tonight and all week on PBS. Check it out.


Mar
28

Time for Drastic

Well, hullo there, strangers! Miss me? 😉

For those of you who have stuck around, bless you for your patience. The past few months have been a bit of an emotional and physical roller coaster. But I have some big news to share.

Last December I went for my annual well-woman exam and mentioned to my midwife that S and I were earnestly starting to talk about getting pregnant. She point blank told me that was a terrible idea. Not because she thought I would be a terrible mother. But because she didn’t think it would be healthy or safe, on account of my weight.

Ouch.

We ended up talking for a long time. She listed all of the potential health consequences of being pregnant and obese. She mentioned that a few more pounds and my BMI would land me in the hospital as a high-risk delivery. Basically, she scared the shit out of me.

Then she suggested thinking about weight loss surgery. I told her the idea had crossed my mind in the past but it always seemed like it was a little too drastic. She looked at me sadly and said “I think we’re there, love”.

Ouch.

So I went home and cried for about two days straight. I was so ashamed. So sad. So … everything. But also so, so grateful. Finally someone told me what I needed to hear.

I’ve never had any serious co-morbidities because of my weight. No diabetes and my cholesterol is beautiful, as is my blood pressure. I had a touch of sleep apnea diagnosed in the past, but it was so mild my insurance wouldn’t pay for a CPAP. So my providers have always encouraged me to lose weight, but never really had that “come to Jesus” talk. I’m still young and fairly healthy. Perhaps they thought (as did I) that I just needed time and support and I’d get back on track. When I started slowing down over the past couple of years because I’ve basically been carrying around another person, I got freaked but just thought I needed to buckle down and go to the gym more, or eat better. The problem is, I did those things for a while and then I’d have a setback and I’d get discouraged and I’d be back to square one. Plus 20 more pounds. Being a perfectionist has its perks, but it can also really mess things up. That whole self-care thing? Setbacks just tend to send me into a tailspin. I believe one of my doctors once called it being “tightly wound”.

It’s never been a matter of not knowing intellectually that I need to lose weight. Or not understanding how to do so. I’m a nurse, for crying out loud. I know. But I’m also a human being with angels and demons of my own, and my particular demons are of the deliciously indulgent variety.

So in all my “free time” this semester, I’ve been doing more homework. Figures. 😉

But this time, the homework has been to figure out what this whole weight loss surgery thing is all about. I’ve gone to seminars and read websites and blogs, and talked to the people I love. I was afraid I’d feel ashamed by sharing this struggle. I was afraid that my husband and family would have the same gut response that I first did … Isn’t it a bit drastic to have your guts rearranged, “just” to lose weight? Instead I’ve been inspired by the outpouring of love and support I have received. Turns out that everyone’s been as worried as I am, and they are proud of me for taking this step. For making the big, drastic commitment to change my life. Because the more I’ve learned about this process, the more I’ve realized that the surgery is only the first step. It helps me lose enough weight that I can do the stuff I must do to get the rest of it off. It’s up to me to take steps two, three and four.

wls_ecard

(Source)

Soooo, long story short, on April 23rd I’ll be undergoing weight loss surgery. Step one, on the books. 


Dec
23

2014: Learning to Say “No”

So far my 30s have been anything but calm. The traditional cultural perception that your 20s are tumultuous certainly held true for me, but I am beginning to think that the whole idea of settling down and really being a grown up (whatever that means) is total and complete hogwash. Every year feels like a new transition, with a new moral of the story.

So here was 2014’s hard-won lesson: this year I learned to set limits.

With one health setback after another and promises to myself broken, I came to two seemingly incongruous conclusions: 1) I will never be not busy because that is just how I operate. 2) On the other hand, it’s important to keep myself busy with things that bring me joy and start moving away from things that drag me down. Being busy for the sake of busy-ness is no fun anymore.

So I learned the word “No”.

I said “No” to a school schedule that was borderline-sadistic and was sucking the enjoyment out of my education…very unusual for me.

I said “No” to working night shift in order to salvage my health and my sanity. I then said “No” to a job that was starting to drain all of my emotional, physical, mental energy.

Then I said “Yes” to three new jobs. Sigh. 😉

But they are all jobs that sustain me, and will open doors to new opportunities as a nurse practitioner. I’ll be cutting back on some of my hours next semester in order to focus on clinical residencies, but I ultimately decided to keep all of the positions on a very part-time basis, to keep my options open when the time comes to transition into my new role.

I am also saying “No” to self-defeat. As many of you know, I have struggled with my weight for many, many years…for many, many reasons. I’ve always rebelled against weight-loss programs in solidarity with my fellow curvy women and in rejection of a societal ideal that is impossible for most of us. But reality hit me right in the gut this year, when my usual exercise routine became almost impossible due to joint pain and deconditioning, and it then became impossible for me to walk down a long hallway or climb the stairs at home without getting out of breath. It’s no longer a matter of rejecting a Size 2-lifestyle. It’s a matter of wanting to be alive when I’m 50 without being totally disabled. It’s a matter of wanting to get pregnant without being “high risk” just because I weigh too much. It’s a matter of wanting to participate in my life more fully. I have turned down social invitations because my closet is full of clothes that no longer fit. I have failed to participate in family outings because I am too embarrassed to break a sweat when I climb a hill in my mother’s hill-y Berkeley neighborhood. I am halfway dreading an upcoming family trip to the Caribbean because wearing a bathing suit is an exercise in humility and I’m worried I won’t be able to snorkel or hike with everyone else because I won’t be able to breathe. I’ve been in a downward spiral for so long that I’m about to crash and burn.

So 2015 will be different. That’s the only pseudo-New Year’s Resolution I am making. There are specific plans being made, but I’ll share when they are more concrete. For now, let’s just say that as I’ve learned to say “No” to the choices that bring me down, I am also starting to learn how to say “Yes” to the choices that lift me up.


Dec
11

Another One for the Books

Gah, someday I will recapture the art of blogging whilst studying, but apparently it’s not today…

Tuesday I submitted my final paper/project of the fall semester. Today I saw that my final grades were posted.

Stick a fork in me.

That’s a wrap.

Another one bites the dust. … Can you tell I’m a bit punchy? 😛

For being my “lightest” semester credit-wise, there was nothing really light about this fall. I worked my tail off, while learning three new jobs. No, I wasn’t stressed at all. In the midst of everything, I also had another crash/burn cycle of migraines, and had to take an incomplete in my oncology residency, which I will wrap up next spring with a new preceptor. I will apparently never learn how to truly slow down.

So what’s next on the docket for Nurse Teeny?

  • Finish up my oncology residency. Just have 50 hours to go. All of my assignments were completed this semester, so it’s a matter of getting in the clinical time.
  • Start my primary care residency in … wait for it … PALLIATIVE CARE! Double bonus – it’s with the medical director at my current workplace, who already knows me well. I was literally sitting next to her at a retreat when I got my clinical assignment via email and almost fell out of my chair. I don’t exactly know how I swung that (I certainly didn’t request it), but I have a sneaking suspicion that someone is trying to tell me something.
  • Resume my DNP coursework with a finance class. *Shudder*
  • Take my first official nursing education class. Woop woop!

I’ll be taking on more responsibility at hospice, which equals fewer shifts in hem/onc. Which is okay because I officially hate giving chemo (another story for another day…). And, I get to continue teaching, which is my newfound love. I’ll be continuing as a clinical instructor in the same class I was teaching this fall, and I’ll also be a lab CI for the students’ health assessment teaching time.

But first I pick up some extra shifts to make some much-needed $$$ and then S and I head to Antigua for five days! Couldn’t be better timing … we both need a break from reality!


Nov
06

Thoughts on Brittany’s Choice

Chances are, you’ve heard the name “Brittany Maynard” uttered frequently over the past several weeks. Chances are, your social media feeds have been full of videos, articles and opinions posted about the decision the 29-year old made to publicly share her decisions related to her terminal glioblastoma diagnosis.

Chances are, you have strong feelings about the choice she made to end her life over the weekend, utilizing Oregon’s “Death with Dignity” act.

As much as I’m sure Brittany valued her privacy, I appreciate her giving a voice to this debate, for coming out and sharing her story, in the face of strong criticism. In many instances, her experiences have sparked a healthy and important debate, from the philosophy and ethics behind the death with dignity concept, to whether there should be a distinction between how Brittany died and other forms of suicide, to whether we have over-idealized death. It has certainly led to conversation about whether death with dignity legislation will reach beyond Oregon, Washington, and Vermont. It has also raised awareness about the important and thought-provoking work of Compassion & Choices, the organization that advocates on behalf of and directly supports terminally ill patients throughout the country.

I’ve also been disappointed (but not necessarily surprised) about the vitriol and judgment that has come across my computer screen..I won’t dignify this hatefulness by linking to it, but you wouldn’t have to look hard. I was shocked to hear a hospice physician declare that she didn’t understand why Brittany wanted to “off herself just because she had a terminal diagnosis”. I feel compassion for the patients with their own terminal illnesses who came forward and begged Brittany not to end her life. I was amused by the comments on Facebook and Twitter that we live in a death-obsessed society, when in my experience, it’s been exactly the opposite.

The reason we struggled with Brittany’s public (and in my opinion, courageous) choice was exactly because we don’t know how to talk about death.

In an era of medical technology that far surpasses the imagination, accompanied by a religious movement that believes that cures for cancer come from prayer, we don’t like to acknowledge that we will all be there someday. We use terminology like “battles” and “courage” to describe those who pursue aggressive treatment, sometimes at all costs. Then we turn around and call people like Brittany Maynard a coward for acknowledging the inevitable and going out on her own terms, after she crossed off the last item on her bucket list (a trip to the Grand Canyon) and after she celebrated her husband’s October birthday.

Working in palliative care and hospice (and with a background as an oncology nurse), I’ve seen “good deaths” and “bad deaths”. But the important lesson I have come to understand is that I don’t get to decide what makes them “good” or “bad”. I may have emotions or opinions, but it isn’t my death to face. And when the time comes for it to be mine, I can only hope that I live in a state that gives me the freedom to face death on my own terms, in my own home, surrounded by my own family.

Death comes to us all, whether we like it or not. I’ve often heard fellow hospice nurses refer themselves as “end of life midwives”. I think this is quite poignant. Just as coming into this beautiful world need not be medicalized to the hilt, neither does leaving. We can love our lives, we can cherish our loved ones, we can grieve for ourselves and for what we might miss when we finally say goodbye. But the truth is, we will all be saying goodbye at some point. How (and with whom) we choose to say it is our last chance to make a choice.

And what a profound choice that can be.

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