Fiercely Independent Pam

Tag: MUSC

  • Finally Progress is Being Made: New Appointments and Staying Home!

    After a long time of being in and out of the hospital since the end April, I finally am feeling more like myself, getting stuff done, and most exciting of all: I finally got an appointment with the dysautonomia specialist (neurologist) at MUSC. It’s not until August 27th, but still that is less than a month away! I have been waiting for his calendar to open up since it was announced that he was starting at MUSC. Major progress milestone!

    I’m really hoping that he has some ideas about what I can do to treat my dysautonomia/POTS/Neurocardiogenic Syncope/Orthostatic Hypotension. Wow, that’s a mouthful! I am trying not to get my hopes up too high in case he brushes me off, but am confident in the care MUSC provides.

    Until then, I am plenty busy with other appointments- both in person and virtual. I am so thankful that I am able to stay organized and on top of my appointments, as it’s a hot mess when I am not on top of them.

    In other news, I am feeling like a master at self-catherization. I have found a catheter that I really like, got them delivered, and can even cath almost blind(without a mirror) while on the toilet. This is so much easier, cleaner, and more independent than cathing on my bed! The true test will be when I am out and about for 3 appointments at MUSC this Wednesday.

    I also received a nice letter from the hospital about the progress of my formal complaint regarding the care I received from 2 different providers at a recent hospital stay (See https://fiercelyindependentpam.com/the-need-for-trust-in-the-medical-world/) for details about that adventure! The hospitalist medical director sent the letter and indicated that an investigation was completed and the providers were “schooled” on what went wrong. I have a call in to the medical director to discuss this further.

    In other worlds of my life, I am excited to help welcome a new Executive Director for my community. I met with her individually on Friday to introduce myself, share what I do with the community, as well as any thoughts and ideas I had. She seemed to understand my concerns and thoughts. This is major progress for our community. I was impressed with her take on the community thus far. I am genuinely praying that she will stay and make our community stronger!

  • 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!”

  • Learning Curve: Starting My Journey with Self Catheterization…

    So, I had an incredibly supportive visit with a urologist at MUSC a few days ago. I never regret the expense or struggle to get there, as it’s 2 1/2 hours away, but it definitely takes a toll on my body. This last visit caused a major PEM crash- I could barely get out of bed for about 36 hours. Today, I’m feeling much more like myself, but still going to attempt to keep things easy.

    Urology update: The MUSC urologist had a totally different approach than I what I was coming up against with my previous urologist. He wants to investigate the problem with continued strichers (most likely caused by multiple foley catheters). He is recommending 3 different procedures including his own turn at a cystoscope under anesthesia. Scheduling them won’t be easy but hopefully it will be worth it.

    In the meantime, I had an amazing nurse teach me, with extreme patience and cheerleading, how to properly self-cath. She allowed me to try multiple times and encouraged me along the way- such a difference than my previous teaching attempt. This allowed me to go home without a foley, which in turn helps with the intense bladder spasms I was having, never mind the chaos of running over my foley with my power wheelchair.

    The process of self catheterizing is not easy. I spent so much time attempting this task, but finally feel like I’m getting the hang of it. The learning curve is huge- still trying not to make a mess of things and the biggest lesson is to simply relax and not to stress out about the process. I’m still working on the timing and how often to attempt, but feel like I found a solution to my urinary issues for now.

    Still wondering how to handle being out and about and needing to self-cath, but that too will come with time. I want to attempt to do it over the toilet and not laying down like I have been. I just keep reminding myself to breathe, relax, and let things happen as they will. Stressing out only makes things more difficult.

    I often joke that my medical journey is going to make a “nurse out of me.” Between self-administering iv’s, picc line management, injections, medication management, iv antibiotics, iv anti-virals, feeding tube, and now self-catheterization, I feel like this is a real possibility.

    Update: I have definitely evolved from here. I am now able to self-cath “out in the wild” and over the toilet. It’s a huge relief that this journey won’t limit me. I continue to be Fiercely Independent!