Fiercely Independent Pam

Category: Health

  • 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!

  • A Shout Out- Saying Thank You to My Care Team at Grand Strand Hospital

    I am a big believer of acknowledging when people go above and beyond what is expected of them. Sometimes, it’s not a big gesture or lifesaving heroic act, but a quiet voice that whispers, “I believe you and want to help you” that makes all the difference.

    I am currently in the hospital and today is day nine of being here. Nobody enjoys being in the hospital, but that isn’t anybody’s fault. For the most part, nurses, doctors, and all the other healthcare workers really try to make a stay decent. It hasn’t been all smooth sailing, but there are many individuals that are allowing may stay to not be so hard.

    First off, a special shout out to the nurses that I have met and helped me thus far. From the emergency department, to the ICU and now on the regular floor, then nurses have been dedicated, knowledgeable, and generally enjoyable to be around. Whether it was a good conversation in the middle of the night(and there were many), careful administration of medications, or just interest in what I was doing to pass the time, “my” nurses help keep me positive despite the health challenges I face. It isn’t easy to find the time to connect with a patient in light of the demands of the job, but it is so appreciated.

    Secondly, the doctors and providers that have steered this latest visit have been top notch. My biggest hurdle on my personal healthcare journey, is when I am not believed, especially by healthcare providers. I have an odd sense about my body and can always tell when something isn’t right. I so appreciate the providers that trust this gut feeling and explore possibilities, even when the presentation isn’t typical. Today, my doctor came in my room after having a procedure and took the time to acknowledge that my journey is difficult; that made a huge impact on me.

    Finally, the “other” healthcare workers that pull together to make time spent in the hospital not so ,miserable. This includes the housekeeping staff that say, “Good Morning” instead of avoiding contact and listening to their AirPods. Also the techs who just know that an ice cream will help in that very moment or are willing without complaining to clean up a mess or change a bed without being asked. The smiles from transport workers and dietary departments go along way too.

    I am sometimes guilty of only acknowledging when something goes wrong. This visit things did go wrong at times, but someone always made it right by listening to me. Being chronically ill, means a lot of time is spent in the hospital. I see good, bad, and ugly, but this visit (which will hopefully be over soon), has been worthy of a BIG Shout- Out!! I wish I kept a list of names of individuals that made this possible, but for now, I say Good JOB and Thank YOU!

  • Hurry Up and Wait…

    My dad would say this all the time, especially when dealing with the medical field. Being in the hospital is a waiting game; you have very little control over when something is going to happen. Nevertheless, you always seemed rushed.

    I’ve been in the hospital, this time for a week now. When I came in, they wanted to do a lumbar puncture to determine what could be going on in my head/shunt. The doctors attempted several times bedside in the emergency department, but had no luck. Lumbar punctures are never fun and always pretty painful. The decision was made to repeat the attempt with the help of interventional radiology (IR). The problem with this is that IR would not do the lumbar puncture until my blood thinners were held for at least five days. So, I waited.

    Five days later landed me right smack during the weekend, where there is a skeleton crew for IR. So, it being Monday, I believed that I would be scheduled today. Around four o’clock, I figured it wasn’t going to happen and I was bumped to tomorrow. My nurse confirmed this and a whole lot of “Hurry up and wait” took place.

    We will try again tomorrow and with any luck it will be a success and I will be able to go home afterwards. Having a shunt and having IIH means that lumbar punctures are always on the table. I came in with a severe headache and blurry/double vision. These are troubling signs of possible papilledema or swelling of the optic nerve in one or both eyes. This can lead to permanent vision loss if not corrected and treated.

    I’ve had several rounds of dealing with papilledema and each time my previous eye doctor would remind me of the seriousness of the issue. Unfortunately, an eye exam is a tricky thing in the hospital. It usually needs to be done as an outpatient because of the necessary equipment and most hospitals don’t have ophthalmologists available beyond phone consults.

    I will be sure to follow up with a local ophthalmologist and if necessary, my neuro- opthalmologist at MUSC. More opportunities to “hurry up and wait!”