Note: This post generated a lot of discussion on various Facebook pages. The bottom line for many people was that you need to speak up for yourself and your Parkinson’s meds whenever you enter a hospital, because the hospital staff may not follow your medication schedule. To help you do this, click here and read about the “Aware in Care” kit that you can get for free from the National Parkinson Foundation.
Last weekend I spent two days in the hospital because I had heart attack symptoms. I am thankful for the professional care I received there, and that I live in a country where such care is possible. I found the staff (doctors, nurses, technicians, nurse’s aides, etc.) friendly and concerned about my health. Nonetheless, I was miserable during much of my stay with high levels of anxiety, so I’d like to get that off my chest now. My conclusion is that hospitals are important and necessary, but I hope I never have to stay in one again, at least with a heart problem.
1. Prelude: What Got Me There?
On Saturday afternoon I was working out at the gym (60 min. weights, 30 min. spin bike), when I felt a pain on the left side of my chest. I thought I had pulled a muscle, so I continued working out.
But when I came home and was eating a snack, the pain intensified severely. It felt like a massive needle was piercing my chest, or like an eagle’s talon was gripping my left pectoral muscle. Then the pain spread down my left arm and up the left side of my neck to my head, causing a headache. I had read many times that if you have chest pain it could be a heart attack, so I quickly downed two aspirin tablets (recommended). My husband drove me to the emergency room at a nearby hospital.
2. What Was Exasperating About the Experience?
Although everyone on the staff was perky, polite and professional, I was a nervous wreck because I couldn’t adjust to my experience there.
I kept notes on what happened (I had paper and pen with me, as I am working on a short story about living with Parkinson’s), and here’s what I recorded about the first fifteen hours. Note: times are approximate and rounded off to the nearest quarter hour.
5:00-ish p.m. –> Arrive at hospital’s Emergency Center. Right away am put on stretcher; wheeled into private room within the Emergency Center. Begin treatment: EKG; blood pressure checked; blood drawn; etc. Get checked out by a cardiologist.
7:00 –> Nurse says my blood pressure is extremely high but my initial blood work and EKG don’t indicate a heart attack. Also: because I have so many risk factors (including high blood pressure and Parkinson’s), I’m going to spend the night so they can monitor me again. However, they don’t yet have an available bed upstairs in the regular part of the hospital. I’ll have to stay in this room in the Emergency Center for a while. The nurse asks if I want a pill to stop the pain in my chest. I say yes. She disappears and never returns with the pill. On her way out I ask her to draw the curtain between me and the door because the light in the hallway is bright and I’m getting sleepy. She draws the curtain.
9:00 –> Nurse never returned with the pain pill. Also, I have to use the toilet. I can’t get out of bed because I’m hooked up with wires to a machine monitoring me. I press the “nurse call” button, but nobody responds. Press button again after 5 minutes; nobody responds. As the curtain is drawn across the door, I can’t wave down anyone walking by in the hallway.
9:15 –> Feel anxious. Get out of bed, still attached to wires, manage to stretch wires far enough to get me to the curtain. Open curtain and ask the first person I see in the hall to get a nurse. Nurse comes, disconnects me from wires. I get to go to the toilet.
9:30 –> Nurses move me to a different room in Emergency Center after realizing the call button in my room doesn’t work. Still no bed for me in the main part of the hospital.
11:00 –> A bed is now available. I am wheeled upstairs to a semi-private room (one roommate). Roommate is on far side of the room; I’m between the roommate and the door. The room is dark and I fall asleep.
12:00 midnight –> Wake up when one of the nursing staff turns on the lights on my roommate’s side of the room and takes his vital signs (blood pressure, pulse). She speaks in normal (loud to my ears) voice. It startles me and I’m a bit anxious. I start to fall asleep again when she leaves.
12:30 a.m. –> Wake up again when another nurse turns on light on my side of the room, does another EKG on me.
3:00 –> Wake up when nurse returns to roommate and takes EKG.
4:00 – 4:30 –> Wake up as three nurses work with/on my roommate, all speaking in normal, loud voices. This constant sleep interruption is ratcheting up my anxiety.
4:45 –> Different nurse turns on light on my side of the room; she has drugs for me to take. When she leaves, she doesn’t turn the lights off.
5:15 –> Another nurse takes blood samples from my arm.
5:45 –> Another nurse takes my pulse and blood pressure.
6:30 –> More nurses work on my roommate. They call out information to someone standing out in the hall.
7:30 –> Time to take my vital signs again.
8:00 –> A new nursing assistant introduces himself and the new day has begun. Breakfast arrives soon after.
Conclusion: I got almost no sleep all night, causing my anxiety level to rocket into the stratosphere. I wasn’t worried about having a heart attack anymore, but was anxious about not sleeping. At home, insomnia drives my anxiety (or is it the other way around: anxiety drives my insomnia?). I realize the hospital staff were doing what was necessary, but can’t believe they interrupt sleep so much.
I spent a 2nd night in the hospital, as the doctors wanted me to take some stress tests on Monday morning. The experiences of the first night pretty much repeated themselves. I recall lying awake in bed most of the second night, repeating these words to myself: I want this to be over. I want this to be over.
During this time, the pain in my chest slowly dissipated, although it’s still slightly there, five days later.
On Monday afternoon I was discharged. The doctors found no evidence of a heart attack, blood clot, or other problem, but they told me to stay away from the gym for two weeks, and to see my regular primary care physician before I work out again.
I was relieved not to have a serious heart condition, but to be told not to exercise for two weeks sparked more anxiety. As a person with Parkinson’s, I’m supposed to exercise regularly.
3. What Parkinson’s-Specific Problems Did I Encounter?
When I first checked into the hospital, one of the admitting nurses asked what medications I was on. I showed her my webpage listing all my drugs and my daily schedule. She wrote it down, and the hospital staff tried to follow it.
Two problems grew out of this: First, the schedule didn’t coordinate with the hospital meal times, and occasionally my Sinemet tablets arrived with my lunch or dinner. When I’m on my own, I time my meals so my stomach is empty when I take Sinemet.
Second, on Monday morning they wheeled me downstairs for a few hours of lab tests. (For example, they took a sonogram of my heart; I ran on a treadmill while hooked up with wires to a machine.) I also waited in an empty room a lot. At a few points I said, “By the way, it’s time for me to take some of my Parkinson’s drugs.” The response: the nurses upstairs are in charge of that, and they are probably too busy to come down to the basement labs. So I missed two rounds of meds.
4. What Lessons Did I Learn?
- Hospitals are great, but it’s better if you don’t have to stay there.
- If you are on a strict PD medication schedule, you not only need to make this clear at the outset, but discuss how it has to be paced with your meals.
5. Anything else?
Yes, some trivia. Why does EKG stand for Electrocardiogram? Shouldn’t it be ECG? Well, for some people it is ECG. EKG comes from the German word for it (Elektrokardiogramm). In addition, our font of knowledge Wikipedia notes the following:
The etymology of the word is derived from the Greek electro, because it is related to electrical activity, kardio, Greek for heart, and graph, a Greek root meaning “to write”.
Bruce, I am very relieved that you did not have an actual heart attack!! But, also anxious that you still have some chest discomfort. Also disturbing is the apparent lack of knowledge of the medical staff regarding the importance of PD meds being taken on a strict schedule. I have heard this from friends locally, too. Would it have thrown them into a tizzy if you kept a supply of your medications with you so that they could be taken when needed, NOT when the nursing staff had the time to give them to you?! Obviously, serious education and training of the hospital medical staff regarding PD needs to be done!
Stay well!!
Bev
Hi again. I mentioned your experience to a Board member of the Central Fla Parkinson’s Association yesterday. He stated that your exact problem had been discussed at their meeting earlier in the day. There is a “Go Pack” (or something similar) that PD patients are encouraged to have ready to take with them when/if a hospital visit is necessary. The patient keeps all of his meds in this pack. When being admitted, the hospital staff is politely told that the patient or their caregiver, spouse, etc. will be in charge of administering those meds because of the importance of them being taken on a strict schedule. The hospital can then focus their efforts on whatever situation brought them to the hospital. Obviously, serious training needs to be given to all medical staff regarding the needs of PWP. Until then, we need to be our own advocate. You never should have missed doses!!!
Hoping that you are feeling well!
Bev
During my husband’s battle with PD there were hospitals that were easy to work with when it came to my administering his Parkinson’s medications. They let me keep them in his room and give them on schedule – all I had to do was report the times they were given so they could keep their records complete. However, there were hospitals that absolutely refused to let me be in charge of his medications, and in those cases it was a nightmare. One hospital even assigned a neurologist who took it upon himself to change the Parkinson’s drugs, in spite of my requests to contact his movement disorder specialist. His rationale was that he was taking too much medication – my husband was in late stage. It was awful.
I’ve learned that you can find hospital policies online so that you will know the most cooperative facilities. Your neurologist might also have recommendations. Unless it’s an emergency, it is well worth driving a bit further if necessary.
I’m sorry Bruce that you experienced these problems but very glad to know you’re doing well now.