Fiercely Independent Pam

Tag: IIH

  • My Love Affair with a Hospital: Adventures at MUSC

    Well it’s been a hot minute since I’ve added a new post. I have been busy with health stuff including making a transfer of sorts from a local hospital in Myrtle Beach to MUSC in Charleston. I love MUSC; I love the team centered approach, the willingness to think outside the box, and most importantly that they put patients ahead of profit. I went from needing another brain surgery to “just” needing a tune up of meds. Such a relief.

    So, I said my transfer was unique. I decided that I needed to make a change in care as I was simply spinning wheels at the local hospital. They were making calls and shot and hoping they would work. So, I decided to take a giant leap of faith and discharge from the local hospital and find a way to MUSC.

    Luckily, I have an amazing tribe (See here for a post dedicated to them). My dear friend answered the tribe “bat call” and agreed to bring me on Monday. It was a leap of faith for sure because there was no guarantee that I would be admitted, but I was and here I am! I cannot stress enough the importance of having a tribe- and do not be afraid of adding new people, sometimes they just need to be asked.

    Beyond the excellent care and better food, I love having a team of med students- attendings guiding my care. I hope my case teaches them something too. They all treat with care and understanding instead of the bare minimum just to check off a box. MUSC truly is a special place.

    Now comes my biggest hurdle, transportation. I no longer drive and rely solely on others to get around. Usually for any local trips, I am able to rely on the bus at my community. I also got a text message from a new local company that I recently tried that just purchased a wheelchair accessible van! Of course there is a fee, but I feel like that has opened some doors for me. Never stop looking for solutions.

    Until tomorrow, I am safe, pain is being managed, and transportation will work itself out somehow. It’s much easier to “keep the faith” when you are at a place like MUSC.

  • Medical Providers: It Only Takes One to Feel Better!

    Have you ever had the experience with medical providers where you feel like saying “WoW, how refreshing to not have to battle with your providers?” I am currently in the hospital awaiting a lumbar puncture and am so excited to state that this is my experience right now! The hospitalist comes in and wants to have a conversation about what is going on with me. He listens and does not put up his “guard” when I suggest something or ask a question.

    This is a treat of sorts. I am very aware that providers are unfortunately not like this as the norm. Too often, providers are either too busy/overwhelmed to take the necessary time with a patient. Or sometimes a provider simply doesn’t like the fact that a patient might actually know more about a specific condition than the actual provider.

    Michael J. Fox speaks about this situation and essentially says the patient dealing with a specific illness is the expert on that illness. Of course we need medical providers that are experts as well, but please do not discount the experience of the patient.

    This is super common with women being gaslighted to believe that their symptoms, including pain are not real. This can be too easily chalked up to anxiety, depression, or extra weight. It is so disturbing that even young, female providers do this often. I can totally appreciate the stress and enormous pressure of being a medical provider, but let’s meet in the middle and realize everyone is stressed out over a given situation.

    Tomorrow, I am scheduled for a lumbar puncture (LP). I am hoping to find some answers as well as a successful procedure with wonderful providers. I usually have excellent care with the Interventional Radiology (IR) department. They seem to love their job, as they are the “Macgyvers” of the medical world. Tomorrow also is the last day that my wonderful hospitalist is on my case. Fingers crossed that I find a provider that believes me and wants to partner with me for my care.

    So, I will wait and see. My prayers tonight are for a successful LP, that the LP provides information to direct care, and a quiet wish to be able to go home asap. What are your experiences with providers? How do you do to honor those that are excellent? What makes you draw the line and make a formal complaint? I’d love to hear from you!

  • 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!