Parkinson's: A Night At the Hospital

 

Snarky Parky & me

A Journey Into Parkinson's with Nancy Mellon

Coordinated by Corrine Bayraktaroglu

 

A Night At The Hospital

Thursday night I spent going through my “Aware In Care” kit. (The wonderful kit that the Parkinson's Foundation has created for hospital visits. And they will send it to you for free!)  I knew I was going to have a heart catherization done on Friday. 

The instructions said to pack an overnight bag just in case the Dr. decides you need to stay overnight in the hospital.  So I was going to bring my kit with me.  But I wondered, if I was having surgery but not staying in the hospital over night, should I give out the Dr's letter to the Dr. or the nurses fact sheet to the nurses?  I knew I was going to give them my new-updated-list of medications.  Steven had already  updated it for me.  It felt like we were -updating it every month or so..

We had discussed putting my nightly dose of Marijuana oil on it.  I had been trying it for getting to sleep each night. It works, but only after my carbidopa-levodopa kicks in. I had gotten a legal marijuana card, but I hadn't printed the card out yet. So I needed to do that and would I bring  along my tiny bottle of the oil? Would they let me use it?  So far it has seemed that any Dr. or pharmacist (I had called to ask if it was ok to take it with my other medicines)that I talked to, really didn't know squat about marijuana and didn't want to. So would taking marijuana into a hospital cause me all kinds of grief?  I was pretty sure it would. We left it off and I wouldn't bring it.

O Dang! The letter for Dr. Reddy (my cardiologist) was signed by Dr. Malone (my neurologist/movement specialist) and gave her phone number to call, if Dr. Reddy had any questions. But, just lately,  I had changed my movement specialist to a Cleveland Clinic Dr. -Dr. Weissfeld-  I had been having major trouble with insomnia and was hoping that getting a Movement Specialist, and hopefully a team of Dr.s from the Cleveland Clinic -”A Parkinson's Center of Excellence-”that they would finally come up with the answer to my insomnia.  But it was too late to get Dr. Weissfeld to sign another letter. So I decided to write in his name as another Doctor and explain that I was in between doctors. 

This all felt sooo complicated that I couldn't sleep at all the night before.

So far my wonderful kit was a pain in the butt.  I had to go through all the medicine 's that I had put in the kit because they were not the same or they had different information on them than I was now taking.

And how was I going to explain that I took my Carbidopa/Levodopa meds at different times each day depending on when I woke up and started taking them?  It was still 4 hours apart but changed when I took them. And sometimes it was 4 doses and depending on how early I started them, sometimes it was 5 doses. Which my new Dr. had suggested. It sounded way too wacky and was hard to write down on the medication list.

OK- so -no eating  no drinking-since midnight- except a sip of water with the middle of the night  meds and a sip with the morning meds.  Am I going to throw up?  Off we go to the hospital. 

At the hospital every thing is fine, people are very nice, except  the Dr. doesn't look at the letter and neither does the nurse.  The one thing that I hadn't done that my kit called for was call the local hospitals to see who would do what I wanted? The big thing was i wanted to self dose. But as my husband said it wouldn't of made any difference, I would have had  to go to the hospital that my Dr. used for his surgery no matter what.

We go get my heart catherization done and I am surprised to hear that they put in 2 more stents.   I somehow didn't think that would be part of  this adventure.  I thought we were just taking a look to see how the stents of 2 years ago were doing.

The worst part of coming out of my surgery this time was that I was seeing double and I had lost my balance and I had no energy. The nurse thought it could be the stress or my reaction to the drugs they gave me or my insomnia.  I got to go home.  We called the Dr. the next day. I was still seeing double and had no balance and was exhausted.  He told me to go to the ER.  We went  about 1.  We were there until around 5 p,m when they told me the Dr's wanted me to stay overnight.  I sure did'nt want to!  But I was told that they had already called the hospital to tell them to come and get us.

At 6:30  Steven went downstairs to see what he could get to eat.  Nothing was open and the machines didn't work.  So he had to go out to get us some food and drink!

The staff were not able to understand what I wanted to do an definitely couldn't do it! They also didn't read the letter.

 They got in another nurse who worked with us and as long as they gave the medicine they would try to get it to us on time. If Steven had my medicine it was ok, but if I had it they would bag it up and give it to the pharmacy. Which I really didn't want to happen.

I asked if Steven could have  a blanket and a pillow .  He planned on staying with me all night. I was very thankful, when they they offered Steven the bed next to mine that wasn't being used.

And thank the good lord, The bed  didn't have an alarm, that went off when I got out of bed to go to the bathroom. The bathroom had a 'hat' in the toilet to check how much I peed, but they didn't  empty it very often and it would fill up and when I wiped, my fingers would dip into the pee.  Ick! Then I would ask the  nurse if she could empty it, please.

The walls of the bathroom, were filled with paint peeling off. 

At 1 am they came to take me to the MRI.  There were 2 men at the MRI lab and they started taking off the patches that were still on my skin, around my breasts, I had been told to take off my underwear when I went  down to the MRI.  Why?and they would change  me into a nightgown with out metal in it. It was humiliating. I got back at  2 am .  They told me they do them all night!  Wow and the loud clanging and bumping that an MRI does is not pleasant.  But i was supposed to come back and sleep?

Our door was open to our room,  and some staff that had gathered outside our door were talking and laughing. I got up and shut our door.

During the night, I  managed to turn on my side and turned on the huge TV by mistake. I couldn't see well enough to turn it off.  So I got up again  and asked at the station outside our door,  how do you turn the TV off?

 At 2:40 am, the nurse came in to give me my meds. The sheets and blanket were scratchy and  slender. At 5 am they came in to do tests for the strokes. The staff nurse was poking me with a pin and asking do you feel it the same way on both sides?

It was an evening for  thoughts of revenge.  I kept thinking I will never agree to stay in this hospital again.  And when I write a  review, (I never write reviews but this one I was savoring) they will be Blasted! But in the morning when the first Dr's came in and talked I decided that i would not do the review.  When I came  home later in the day, that was the first email that I got. And I decided to write the review but Dang, I don't think It got published!

Anywhoo, that's it, my night at the hospital.  I came home very happy to be going home and not feeling well at all.

 

Not so Cheerful,

Nancy and the Snark

Footnotes From Corrine:  That sounds like a thoroughly confusing visit for so many reasons. I am glad you are home and resting. Get Well Soon xxxx