Hospital stay

[Astra7]

I have to spend a few days in hospital having a knee reconstruction. Does anyone have any advice on how to manage my Parkinsons meds in hospital? I hear stories about people’s regular meds being forgotten by the nurses which would be disastrous in my case! I am wondering if it would be wise to have them put into a blister pack by the pharmacy?

[park_bear]

See here for a list of downloadable Parkinson's hospitalization safety documents:

parkinson.org/resources-sup...

[jeeves19]

just keep some in a book etc. don’t let them take them ( well let them some eh?)

[beehive23]

in my experience always keep hidden enough of your crucial meds ie: carb/levo, that dont fall on the normal nursing rounds which is three times a day. park.org used to have a hospital survival kit for free...the problem is getting even worse with nursing staff suffering a big decline and burnout. hang tough.....

[scotta]

Here's a link for a new report describing the dangers of swallowing issues with PD when hospitalized. Something many of us don't normally think about.

parkinsonsnewstoday.com/new...

[docjleonard55]

Discuss with the attending Hospital doctor. I was a nurse. Meds are not randomly given or forgotten. They are on a specific schedule as ordered by your doctor. There is a window for them to be given and it is recorded whether given or not.

[LeharLover62]

in the US, the hospital pharmacy will issue the meds you need that they have. You have to bring your own supply of anything uncommon (like say Neupro in our case).

I would make sure you tell them the exact dosing you are accustomed to at home when you check in, as it will be difficult to correct any mistakes after they get it into the computer.

If you have a variable schedule at home, tell them that too. (Like if sometimes you skip the nighttime dose depending on your symptoms)

God luck! Hope you do well and get your knee up and working again.

[Lionore]

Keep an emergency supply hidden perhaps in a pants pocket. If the hospitapharmacy is out of your medication you can ask permission to take your own in the presence of your licensed nurse who will document inyour chart. It’s unlikely that you will receive your medication on schedule and you might have to abstain from high protein foods if you are taking IR levodopa too close to a meal.

[Jana86]

I had a heart valve repair 3 weeks ago that required a 5 day hospital stay in Boston. I tried to find articles on med management and what to pay attention to. I am going to write about this experience and what I learned, but happy to share what I think are the most important things to pay attention to.

1. Be sure your neurologist knows the date, time, and purpose of your hospital stay. Connect your neurologist to your surgeon and vice versa. Talk about your med management concerns with both of your providers.

2, Find out as much as you can about the timing of prep, likelihood of significant delays in start times of procedure, post surgery: how long you may be unable to accurately communicate or track your PD med compliance yourself. Work with your family or friend who will be on-site at the hospital to help them understand your med schedule and how it will likely be adjusted around the surgery and immediately following: intensive care, step-down recovery, transfer to a regular room, probable length of stay, discharge criteria, etc.

3. The most vulnerable times will be the transfer points between hospital units. I think the most valuable precaution I took was to WRITE DOWN the likely integration of PD med administration on the day of surgery and days I would need help managing my meds and also provided the schedule on normal days. I typed this up and printed out a one page handout in multiple copies (old school but it worked) and gave that to my daughter and husband in a folder to bring with them. I provided a copy to the surgeon's nurse practitioner at my pre-op visit and she agreed to give it to my surgical team.

4. When in the Intensive Care Unit, immediately post surgery, my daughter delivered a copy to the head nurse as soon as I was transferred, and then in the step-down...same thing, and so on. As I moved from unit to unit, I was comforted by the fact that my handout was posted on the bulletin board nearest to my bed and I could refer nurses to it if there were issues (there were) and help the pharmacy folk to do better.

5. Working ahead of time with my neuro, she agreed that we needed to think through how we would deal with the likely fact that I would be unable to manage my meds for up to three days. We decided to move my C/L to Rytary about 8 weeks ahead and to see how I responded to the Neuro Patch. Between the two, we were able, for those three days, to be confident that my dopamine support would not crash...it might not be perfect but I would not wake to violent tremors (my nightmare) while managing multiple incisions and punctures of my abdomen and chest wall. There is research that PD cardiac surgery patients are in hospital twice as long as non-PD patients....I was home in 5....the very least amount of time. 7 days would be normal/average for all patients.

I have a lot more to say about this issue (the degree of ignorance about PD, the inability of hospital pharmacies to accomplish, on-time delivery of meds, the lack of communication about likely PD symptoms and needs, etc. etc.)

I hope this is helpful.

[LeharLover62 in reply to Jana86]

Lots of great ideas here.

I second the Neupro idea. If you can tolerate it, when you are under sedation or too sick to swallow pills, the patch is a lifesaver! (But you need to test it out before hand to make sure you tolerate it)

[Jana86 in reply to LeharLover62]

Agree...I tried it for 3 days: 1 patch, then 2, then 1 per my neuro's suggestion.

[Baileytwo]

I had knee replacement about four years ago. And I ran into the same problem. The nurses were very forgetful about my medication. I actually threaten to call Medicare and complain. Finally, the manager came down, and I explained what was going on and that was extremely important to get my meds on time After that, I had no problem. But I also made sure that my husband had my meds with him in case I needed them

[Jana86]

There are very few studies of Parkinson's patient experience in hospitals. I did find 2 articles and both identified late and/or wrong meds as the most common complaints. One noted that the average delay in getting the right meds at the right time is 12 hours.