Fiercely Independent Pam

Tag: Grand Strand Medical Center

  • Newest Health Update: Guess Where I Ended Up?

    This update is coming from no other than the fifth floor of the south tower at Grand Strand Medical Center- my home away from home! UGH!!

    I was minding my own business, and went about my appointments on Wednesday through Friday. It was a total of 6 appointments. On Friday, I was beyond exhausted and tired of dealing with the headache, eye pain/double vision, and a neck that was getting more stiff by the hour.

    Let’s start with Wednesday. I had 3 appointments planned for a great adventure to MUSC. I am forever grateful for a good friend taking me, but the trip did us both in.

    First up at MUSC was an endocrinology routine appointment. I was touching base about my adrenal Insufficiency, diabetes, and pituitary tumor. I left with lab requests, new insulin scales, and a wait and see with the tumor.

    My second appointment was with pre-op (for a bladder procedure on September 8th)They were very detailed orientated and I met with a nurse, doctor, and anesthesiologist. Feeling beyond confident in their hands for 8/6.

    The third appointment, was an adventure to say the least. I was told when I got there that it was much involved than I thought it would be. A catheter would be inserted by urology, then contrast would fill my bladder and pictures would be taken. I was told that people usually need 2-4 bottles of fluid before needed to void. Well at bottle 7 they decided I was full enough. I wanted to pee so much, but of course nothing would come out beyond a couple of drops. I strained and strained too, but no avail.

    So they allowed me to try to void in the toilet, but that was a limited amount too. They took a ton of pictures and then let me cath myself and took more pics. MyChart would provide an update, but need to wait for input from my urologist.

    Finally it was time to go home and we both enjoyed dinner from Raising Cane’s and were beyond zonked!

    Fast forward to Thursday- a head ct to prepare for my neurosurgeon’s appointment on Friday. This was followed with A LOT of napping/chilling out! I also had an amazing dinner with my 2 “grown up” nieces- it was wonderful!

    Now I am stuck at the hospital again. I never made my appointment on Friday (long story) and tried to find a way to have my neurosurgeon give me some advice about the symptoms I was having. Was told to go directly to the ER and get treatment. UGH!

    Click Here for more information about getting my VP shunt and being diagnosed with IIH and/or Click here for an update about my previous admission.

    I am stuck in a crazy cycle: something is wrong with the shunt, but a lumbar puncture (LP) can’t be done until my blood thinners are out of my system. So, I wait, again! In the meantime, neurology put me on antivirals just in case it is meningitis again (viral not the scary bacterial kind).

    I have wonderful nurses and now I am with my favorite doctor here. As I’ve said before, heath care trauma is real and has a lot of consequences for the patient, provider, and others. It’s easy to dismiss patients when they are “profiled” as almost anything, but having mental health diagnoses makes it even easier to profile a patient and not usually in a positive manner.

    My next update will be after my LP on either Tuesday or Wednesday. Between then and now I will practice my patience and try to keep busy! (which would be a lot easier if I didn’t have a bed alarm!)

    Picture of a laptop with wordpress opened and in the middle of writing a blog and hospital room things in the background (TV and wall charts).
    Current Situation!

  • And So it Goes… Life as a Frequent Flyer

    As a kid I was labeled as a frequent flyer in the nurse’s office. Always with a general “I don’t feel well” complaint. Never ran a fever so I didn’t get to go home. I knew even then that something was up with my body, but it took over 35 years to figure it out. My immune system is not normal and doesn’t present normally. I have been severely septic and was not running a fever.

    Fast-forward to today. I am currently in the hospital again, awaiting discharge after 3 nights. My blood pressure was dangerously high again (I cried “Uncle” at 250/100)! My head was hurting a lot and my chest pain returned. The ER docs/nurses were fabulous as well as the rest of my care here at Grand Strand Medical Center. I had 3 specialists working my case and one was better than the next. It is experiences like this that help rebuild my trust in the medical field after poor experiences (see https://fiercelyindependentpam.com/the-need-for-trust-in-the-medical-world/ for more details about my latest adventure that created even more mistrust)

    So, since the end of April, I have been in the hospital more than I have been out. This alone gives me the title of a “frequent flyer.” I wish I was talking about the airline program that gives points for future travel, but the only thing I get is bills and more doctor appointments. I know this isn’t anything to be proud of but it gives perspective for sure.

    I also had a weird experience of running a fever for almost 48 hours, but luckily that broke overnight and my white blood count never got out of control indicating that is was probably a random virus. I was feeling extra crappy during the fever as well.

    It seems like the doctors finally figured out the correct meds for me to take to control the blood pressure while discontinuing other medications that were making my blood pressure rise. My neurosurgeon also readjusted my vp shunt. (see https://fiercelyindependentpam.com/wp-admin/post.php?post=148&action=edit for more details about why I have a shunt)

    Here’s hoping my blood pressure stays under control and doesn’t go to dangerous levels (either too high or too low). More than anything, let’s hope that I stay out of the ER and hospital for a good amount of time!

  • Finally, Good News- Shunt Updates…

    Well, previously I posted about my shunt/IIH/high pressure symptoms and issues. I had to wait a week to get the lumbar puncture (LP) done because of being on blood thinners and dealing with the weekend. Interventional radiology (IR) performed the LP on Tuesday and the opening pressure was indeed high. I knew it was! Also, they found high levels of protein in the spinal fluid (CSF).

    My local neurosurgeon was in this morning and developed a plan. The shunt is going to be readjusted to a lower setting so it drains more and go back on diamox (ick!). I need to follow up with ophthalmology asap and setup a new ct and appointment with neurosurgery.

    Not sure what is happening about the high protein levels, but it might just be an incidental finding, although I’ve had it before. I am just beyond ecstatic that the shunt doesn’t have to be replaced at this time. I really couldn’t wrap my head around another surgery at this point and/or the impact it would have on my hairstyle!

    Now I just wait… for neurosurgery to readjust my shunt, which can be done bedside with a cool magnet thingy, and for the final word on discharge. I am so looking forward to being home and in my community. I have more follow up appointments than I’d like, but that okay by mean if it means I can sleep in my own bed and do my “thing.”

    My bed at home, waiting for me!