I just got back from five days in the hospital. I thought I’d share exactly what goes into a typical hospitalization for me.
I had been sick for about two weeks when I called my doctor this past Monday morning. We had tried several different medications to treat my lung infections at home, but when my heart started overworking itself to compensate for my sick lungs, I knew where I was going.
As always, I tried my best to avoid going into the hospital, but I reached a point where there was nothing left that they could do for me at home.
Another Day in Paradise
This was a particularly inconvenient time because Ken and I had planned (what was going to be) an amazing night in Boston – seeing Billy Joel play Fenway Park. I couldn’t have imagined anything more exciting than this event. Anyone who knows me knows how much I love Billy Joel, and at Fenway, well, you couldn’t get much closer to a perfect night. So when it became clear that I needed IV antibiotics, I had to buck up and accept that we’d miss the show. (I’m so happy that we were able to sell the tickets to a friend who is also a huge Billy Joel fan. News flash – they had an amazing time!!)
I realized how sick I had become sometime Sunday night. As I lay in bed, awake for the tenth time in a few hours, I mentally prepared myself. I tried to relax as much as possible and keep calm. Getting anxious wouldn’t help the situation at all. My kitty Molly was sleeping in a fluffy ball right up against my stomach, and each time she repositioned herself, I just held her closer and kept petting her.
Anyway, early Monday morning around five a.m., I was awake when Ken opened his eyes. I told him that it was time to go into the hospital and he agreed. We fell back to sleep for a few hours until my doctor’s office opened, when I called them. It was a swift decision – the nurse told me to get to the Emergency Room and they’d admit me that way. I was pretty scared because I felt so terrible.
I spent five days inpatient, battling stubborn bacterial pneumonia infections. Interestingly, there were three other CF patients on my floor at the same time – that has never happened while at my current hospital.
I actually got to meet one of them – she was also at the same Great Strides event we attended last month. However, due to strict cross-infection protocols, we could only mime to each other from a minimum of six feet away. So every time she took a walk, she’d peek into my room and wave, and each time I took a stroll, I’d do the same. (We also became Facebook friends. Thank heaven for the internet!) It felt like I was at summer camp or something – seeing the friendly face of someone else in the same boat as me was a great mood booster. I joked that we will have to pre-plan our future hospital admissions.
Several people have asked me what happens during a hospitalization, so I thought I’d share how everything transpired this time.
- Stabilization – I came into the hospital via the Emergency department, which meant that they had to first stabilize me. My heart rate was extremely high because it was trying to compensate for my decreased lung function due to infections. I was pretty weak when they rolled me into the triage room, so much so that two nurses had to undress me. The simple act of sitting up on the gurney sent my heart racing, and they did everything they could to limit any exertion.
- Triage – I had several tests to rule out any acute issues other than my infections. The nurses placed an IV to take blood for lab tests, shot a chest x-ray, ran an EKG, and monitored my breathing and heart rate.
- Admission – The ER doctor had to coordinate my admission to the hospital with my CF team. It can sometimes take an entire day to do so when the hospital is very busy. Thankfully, this time, I only spent a couple of hours in the ER before they set me up in a room and developed a treatment plan.
- Settling in – Once in a room, I see the floor doctors, go over my medication list, and start IV medications.
- PICC Line – I always get a PICC line (IV) placed, but in my case, we have to schedule placement with the Interventional Radiology team. There was no room on the schedule for Monday so I had to wait until Tuesday morning. (I have a lot of scar tissue in my veins due to previous blood clots and are therefore challenging to place.) The technicians use X-ray to locate and guide them through an appropriate vein. This can either go smoothly or take several attempts over several hours. I was lucky this time – it took only 45 minutes!
- Implementation – Medications. Airway Clearance. Repeat. I received three different IV antibiotics in doses around the clock, and spent six hours a day using my Vest for airway clearance. That is no typo – I am doing six (6) hours of airway clearance a day. I did this routine for five days. I also had a stationary bike in my room and took several walks a day.
- *BONUS* I also took advantage of a new program for patients – free Reiki sessions! I had never had Reiki before; it was a pleasantly relaxing experience that I will absolutely do again if offered while inpatient.
- Discharge – The worst place for someone with CF is the hospital. There is great risk in acquiring new infections, so once/if the patient improves enough to take care of him/herself at home, the CF team does everything to make that happen. My doctor told me that I could go home if two things happened:
- I had to perform reasonably well on my Pulmonary Function Tests, and
- The level of the C-Reactive Protein in my blood – it measures inflammation in the body – had to decrease from a high of 55 from Monday (my previous level was a 5).
I am happy to say that I scored well enough in both areas to earn a ticket home to finish the remainder of the planned 3 week course of IV antibiotics. While my numbers showed overall improvement, I still have quite a way to go.
So, for the next sixteen days (nine if I do really well!), my life will consist of Medication, Airway Clearance, Rest, and building back my endurance (that means laps around the house and conquering the stairs). I have six doses of antibiotics, some which take up to an hour to infuse, plus six hours of doing my Vest (airway clearance).
That’s a lot of work, but it’s an investment in myself. I had hoped to make it a year between hospitalizations, but life happens. All I can do is do my best and pray it’s enough.