Home from the Hospital

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I’m home from the hospital and I don’t even know where to begin….

This picture sums up how I feel about my recent hospital visit 🙁

I am so happy that I listened to my crazy body and went to the ER on Tuesday.  I couldn’t get out of bed all day, because the pain was so bad, and just as John  (my husband) was going to sleep I said I don’t think this can wait… and we headed downtown to Northwestern Memorial Hospital in Chicago.   It was an absolute nightmare from start to finish, but I think overall it was really good I went there.   Northwestern has a great reputation, and has amazing doctors, but honestly I have never seen such a shitshow in my life.  I had 25 Doctors coming to my room daily to ask me questions, but I was so lost the whole time.  They kept telling me things they were going to do, treatments, tests, medications etc.  and then the next doctor would come in and have no idea what I was talking about, and have a whole new plan.  I ask alot of questions, and am probably a pretty annoying patient but I still deserve to understand what is happening with my body, and after leaving there I have never been more confused.

We waited 5 hours just to get a room in the ER, they were pretty busy and had patients in the halls on gurneys, which is definitely not unusual for the ER there.  Right off the bat the ER doctor said they aren’t going to be able to figure out what is wrong with me, and all they could do was maybe help with the pain.   Great, so glad I drove an hour and waited 5 hours to hear this.   They were going to order a CT to make sure my stents and bypass were in place, but other than that I would just have to follow up with the Doctors I was already seeing.  I went there hoping they would just admit me and figure it all out, but this wasn’t looking good at this point.  The ER doctor wasn’t very nice, and didn’t really give the vibe that he wanted to help.   What else is new…

I had the CT and fell asleep waiting for the results.   The ER doctor came back in, woke me up and told me I had a dissected artery and that someone else would be in to tell me more.  I am half asleep and not really understanding, but I know that anything dissected is not good, especially an artery.

The next few hours were really confusing and scary, as they kept telling me they had to make sure I hadn’t had a stroke, and was being moved to the stroke floor (neuro).   They did an MRI of my brain, two Transcranial Dopplers, X-rays, an Echocardiogram, and a CT.   Thankfully nothing showed a stroke.

The thing that is toubling to me, is that this doesn’t even explain my pain, or all of the weird things going on in my body.   This is just one more for the list.   I feel like I am back at the beginning, but with added symptoms, and more medications.   I’ve been trying to go OFF medications, I feel like doctors just keep adding meds that don’t help.  The ones added by the hospital are very necessary, but I feel like I am taking a step backwards   😒.  The only thing this dissected artery explains is my neck pain and my headaches.  I am hoping this new medication I am taking will help with this over time, but it could take months…..

Basically the course of treatment for a dissected Vertebral Artery is to take anti-coagulation medication and check on the progress.  I am still really lost on all of this but here is how it was explained to me… There is a tear in the lining of the artery, and when the tear happens, it forms a clot.  The blood gets trapped in the tear and has no where else to go.  The medication I am taking will thin the blood and dissolve the clot.  Hopefully as this happens the pain will get better.     ?

I was on the Neurology/Stoke floor so alot of the Doctors there don’t really understand all of my other Vascular issues, or that I am in a ton more pain than I should be.   THAT is what is concerning to me.   Its been really hard to get my pain under control, and if the pain isn’t really explained by this issue, where is it coming from?!?!?!?   And why are none of my doctors concerned by this?  I am very concerned by this.   This was why I wanted to go to Northwestern, so they could look at my body as a WHOLE and maybe get some things figured out.   I feel like all I have is 1000 more questions.

They switched my medication I take for my heart rate/migraines and my heart went out of control.   My heart rate was going up to 150 from taking a sip of water and barely moving.  It was up at 170 when I got up to go to the bathroom and walk 4 steps.  My heart rate NEVER goes this high unless I am doing serious Cardio, and that is not very often.  I was on Propranlol for the last probably 7 years, and they switched me to  Varapamill because they thought it would help more.  They didn’t taper it or anything so it was probably just withdrawing from something I have taken every day for 7 years.  They were still trying to discharge me while this was going on….??!!  I realize I am probably a little more paranoid about my own body then the doctors are, but when I am getting dizzy getting up from my bed, and my heart feels like it is beating out of my chest, I didn’t really feel like it was time to go HOME?!?!?!

They ended up letting me decide if I wanted to stay another night, and I decided yes.  After all this though, my “team” of doctors never even came back.  They sent in what seemed like the least experienced and least helpful one to “deal” with me Friday when I was trying to get discharged.  My nurse told me at 7 am that I would be discharged in an hour, and to have my ride come.   Well I didn’t get discharged until around 1:30pm and it was not a fun morning.  This doctor that they sent in lied to me multiple times, and I will NOT have her treating me going forward.  She actually ended up apologizing to me in the end and thanked me for teaching her something about how medications and Pharmacy’s worked.   Yep, I taught a doctor all about how Pain Medicines work at the Pharmacy, and she literally had no idea.   She wrote the prescription wrong, and I have had the same issue multiple times, so I tried to explain to her what it needs to say in order for me to take my medication correctly, and be able to get a refill when I see my pain doctor this week.  Not only is it hard enough to get a Doctor to prescribe something that helps, but then you have to make sure it is written correctly because the Pharmacy is worse than the Doctors and they REALLY don’t care if you don’t have the meds you need.  She actually told me to take them NOT as she wrote the prescription, and just take more, which is wrong on so many levels.   She was just lazy and didn’t want to re-do it.   She fixed that one, and it was ready when I got home.   The actual important medication that she prescribed was not of course.   My new blood thinner was not there, and me and John spent all afternoon into evening calling the hospital and pharmacy.  I got hung up on a few times before I gave up, and John finally got through to my Nurse (who was awesome I have to say) and after she sent the request to the Doctor 3 more times, it was finally at the Pharmacy at like 7pm.   It shouldn’t be this hard.   I just want to feel better, and our crappy health system is making it damn near impossible.    #Onward #AndTired

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