Relinquishing Control in the Hospital

I just received a letter in the mail which included a six-page questionnaire about the care I received while in the hospital for 2 weeks in September.

They ask questions about the care I received, the hospital environment, my hospital experiences, tests and treatments, etc.

I am under no delusion that my care is very complex. At home, I manage 15-20 medications, test and monitor my blood sugar for diabetes, and perform airway clearance (lung therapy). It’s not just a matter of taking a bunch of pills each day. Many of them have to be taken at specific times, in relation to waking up, eating, performing certain activities (like driving), avoiding potential interactions, managing treatment side effects, etc.

So when I’m admitted to the hospital, I have to turn in all control to a series of more than a handful of different departments to manage.

Every hospitalization is a challenging experience. I’m awakened early (sometimes 4am) to get blood taken, doctors from 3 or 4 different specialties visit me daily, each asking all of the same questions, poking and prodding me according to their focus. I feel like I have to give up agency over my own body. I succumb to the authority and power of mostly strangers. Continue reading

Keeping Organized with Cystic Fibrosis

Having Cystic Fibrosis almost demands some level of organization.

When my health changed in my early 20s, I only had a handful of medications. Now, my list runs between 15-20 different medications, many of which I have to take daily (or more often). I have to manage daily doses, maintain an inventory so that I know when to refill medications, and keep it all accessible and organized. Continue reading

The Road to Orkambi

You may have heard that there is a new medication for people with a certain gene mutation of Cystic Fibrosis.

The FDA has approved a new drug that treats patients with two copies of the most common gene mutation, Delta f508. Forty-five percent of CF patients fit this profile.

The Basics of the Cystic Fibrosis Gene Mutation

Each of the more than 1,500 known mutations affects protein responsible for the proper transport of salt and water through each cell, creating a thick, sticky mucus that clogs the lungs and digestive system. Each of those mutations in the CFTR (transmembrane conductance regulator) protein has a different faulty mechanism.

Think of the protein as an electronic garage door. Consider some ways in which the door can malfunction: Continue reading

Dealing With Emotions When I’m Sick and In the Hospital

I just came home from a week in the hospital for an exacerbation of my Cystic Fibrosis. Several rounds of oral antibiotics and increased airway clearance/chest physiotherapy weren’t enough to keep me healthy, so I headed back into the hospital for IV Antibiotics.

My temporary IV posing with 3 different IV Antibiotics. It only took 3 tries to get this one in.

My temporary IV posing with 3 different IV Antibiotics. It only took 3 tries to get this one in.

Continue reading

Ten Things that Make Hospital Stays More Comfortable

Like many people with Cystic Fibrosis, I have spent a lot of time in the hospital. To be exact, I have had 27 different inpatient hospitalizations that lasted more than one day/night, and with each one, I learned something new about how to make my stay a bit more comfortable.

10. A blanket from home. It’s more of a comfort thing since I don’t like to pile on blankets because I sweat easily, but I can put it over my shoulders when doing a Vest or breathing treatment, and cover myself on my wheelchair or gurney when I’m being wheeled to and from tests, procedures or surgeries. I get lots of comments on this one:

A friend made this for me years ago, and it is one of the blankets that have traveled to the hospital with me.

A friend made this for me years ago, and it is one of the blankets that has traveled to the hospital with me.

Continue reading

Navigating the World of Health Care (pt 2): The first Steps to Getting Help

In Part 1, we discussed the idea of being sick. It’s a scary place to be, and it’s important to have a clear mind when seeking medical care. In Part 2, we will guide you through the first steps of seeking answers.

“What could it be?”

Whenever we get new a troubling symptom, usually out of nowhere, such as chest pain, stomach pain, difficulty breathing or numbness in parts of your body, or infections that aren’t heeling, or discomfort and pain after an injury, it’s hard to think straight.

Sometimes, you’ll have a symptom that can be pretty severe while it’s happening, but happens so intermittently, you it’s hard to establish patterns. You can’t even remember when it first happened. Doctors can be dismissive if you can’t provide much more info than “it hurts when I…”. It is common to see several doctors before one will actually try to figure out the problem, even if it’s severe.

steth

Doctors are so jammed with patients, you’re lucky to get 10 minutes of time with one. And when you do, you have precious few moments to get your history and your reason for being there. And when it comes down to it – medicine is just a job. One we attach noble intents to, but still a job, done by a regular person with the same stresses, emotions, frustrations, flaws and potential to make mistakes as everyone else does. Continue reading

Navigating the World of Health Care (Pt 1): Feeling Sick

I am not a doctor. I’m not a nurse or a medical professional of any kind. I am a person who has sought answers to many questions, has spent quite a bit of time in medical offices and hospitals, being studied, poked, treated, medicated, being opened and sewed shut.

I have traveled down many dead ends and logistical mazes in the search for proper care. I feel that what I have gone through in my life has prepared me to be who I was meant to be – someone who helps others. If my challenges can in any way help someone going through a tough time, then the struggles will have some meaning.

This is the first in a several-part series of thoughts regarding how to navigate the medical world, starting with: feeling sick.

It doesn’t matter if it’s pain, difficulty breathing or heart palpitations, sudden or gradual worsening of a previously just annoying symptom, a lump or bump or an injury – if something isn’t working right, if part of you is “sick”, you go to the person who can fix it.

Quantifying how you feel isn't always easy.

Quantifying how you feel isn’t always easy.

Where to start – State of Mind

Think about a time when you felt something was wrong, physically. Wrong enough to think, “this doesn’t feel right,” or worse, the panicked feeling that you might die if you don’t seek help. Fear of the unknown can paralyze the best of us, especially when something is medically wrong. At this point, all we want is:

  • Relief from whatever the h*ll is making me feel this way.
  • A diagnosis. I want to know why this is happening.
  • To know that I will be okay.

It’s important to start your health care journey with an open mind. Everyone seems to have a similar story about themselves or someone they know. Googling your symptoms plants all sorts of ideas in your head, and soon, you’re freaking out about the worst case scenario.

One thing that I have learned from years of experience as a patient is that the fear of the unknown is always so much worse than having a diagnosis in hand. At least with a diagnosis, you can start a treatment plan. Knowing is half the battle. Knowledge is power.

In the next part, we’ll talk about a few scenarios you might find yourself in.