Fiercely Independent Pam

Tag: MUSC

  • Advent/Christmas Celebrations Sprinkled with More Doctor’s Appointments!

    Advent/Christmas Celebrations Sprinkled with More Doctor’s Appointments!

    The rush before the holidays used to be insane for me! When you lead a Catholic School, you literally have to celebrate everything in the month of December and the season of Advent. Saint days, concerts, surprise visits, Santa landing on the roof of the school, the Gingerbread man running off his tray… EVERYTHING! It’s so much fun, but exhausting. I miss it- A LOT! Now that I am living in senior housing, we have a lot of activities for the Christmas season. I am enjoying finding time to share talents with others. It also means a lot of doctor’s appointments in a short amount of time because offices are closed a lot during December for their own activities.

    So, I’ve been busy with appointments. BIG appointments. I feel like I am past the point of going to appointments to survive and now finding ways to thrive and prevent bad things from happening. Yesterday, I had my annual brain MRI for my V/P Shunt and to also take a peek at the pituitary tumor that lives in my brain. The MRI is less than comfortable since they have to not only stick you deep into the MRI machine, but also place a cage like thing over your face and head. It took about forty minutes inside the machine, and really the only thing I ever think of doing is praying.

    Yesterday afternoon, I also had a Telehealth with the Dysautonomia specialist at MUSC (AKA “The Wizard”) He was his kind, understanding, knowledgeable self. We talked about the skin biopsy I did in October, which was very positive at all three sites for small fiber neuropathy. Still trying to learn what all that means. We discussed the need for me to pick up the cardio rehab program again and the frustrations of trying to get the Zeen approved. We changed a few medications to help prevent my blood pressure from bottoming out. He invited me to reach out if I needed anything but scheduled a follw up for spring time.

    Today, I made the trek down to MUSC for two different appointments, with the first starting at 8:30am, so it was an early morning. My first appointment was with an infectious disease doctor who specializes in risk assessments for future surgery. In my case, I was referred to her by an orthopedic surgeon for possible total hip replacement surgery. She had some grim thoughts about complications with the surgery, stating that while the average risk of infection for someone is around 1-1.5%, my risk was near 10%. She had some ideas to mitigate the risk some including nutritional support, blood work, and nasal swabbing all before the surgery. It’s a scary proposition and I have no idea where I land with it all.

    The second doctor’s appointment was my annual appointment with a neurosurgeon about my VP Shunt and IIH. She checked the shunt settings (they didn’t move during the MRI)and also reviewed the MRI. The shunt is doing its job a draining extra spinal fluid away from the brain. We discussed that my recent weight loss and use of a GLP both help reduce the pressure. The next step is my annual torture at the eye center to determine if the optic nerve continues to be affected by the pressure. My hope is that I receive an “all clear” and can stop taking the diamox medication that I hate taking. I have another appointment with a different neurosurgeon soon to review the results of the MRI in regards to the pituitary tumor- which spoilers alert- is growing and secreting hormones at twice the rate it did last year, but that’s a conversation for another day!

    So there it is, a weird brain, high infection risk, and blood pressures that won’t behave. I am beyond a hot mess- and just so complicated. I am so fortunate to have MUSC in my life and their expertise and caring nature fit my needs. It’s just a shame that they are over two hours away and require a small mortgage payment to get there and back.

    Advent is here! We are all counting down the days until we get to meet our Lord in swaddling clothes lying in a manger. It’s exciting enough, I do not need this level of craziness from the medical world.

  • An Un-Modest Update on My Stupid Bladder!

    Now that I have “mastered” the art of self-catheterization, it has just become part of my everyday (well every 4-6 hour) lifestyle. I am successful outside of my own bathroom and having few issues with the process. The biggest point of frustration with my bladder and the process is having to be always prepared. I have a small cosmetic bag full of any necessary supplies. Most of the time, I remember it if I am going somewhere without my wheelchair(I keep it on the back of my wheelchair).

    In the spirit of losing all modesty, medically speaking, I also want to disclose my other issues with what I like to call, “My Stupid Bladder.” I am dealing with incredible urgency issues- like a 3 year-old- who just left the house after being told told to use the bathroom before getting in the car, but of course did not have to go- issues- BOOM! They can be painful and because of recent events, I cannot move quickly to get to the toilet all the time. If I am out of my apartment, it complicates matters even more.

    Additionally, despite not being able to successfully urinate on demand, my stupid bladder leaks. This I believe is the worst symptom, as it is unpredictable, unpleasant, and embarrassing. I have found good success with my favorite Lil Helper reusable pads and “system” These usually prevent leaks from being a bigger problem, as I stubbornly refuse to start bringing a change of clothes with me places. I highly recommend them for both urinary and period issues. SO much more comfortable than disposables and such a better option for the environment. They are super easy to “deal with and clean.”

    This past Thursday, I went back to MUSC for more bladder studies and an appointment with my wonderful urologist. I completed a urodynamics video study that required not much more than my lack of care for modesty. Basically, I sat on a converted table-to-chair where various catheters were placed to record bladder “strength” and other measurements. I then received a large amount of fluid into my bladder that contained contrast material. During the filling, various x-rays were taken of my bladder and vitals were kept.

    The nurse recorded when I reported that my bladder was feeling full and would need to urinate soon, needed to urinate immediately, and feeling immense pressure to urinate. She then told me to try “going” which of course was unsuccessful. She then cathed me and I felt immediately relieved!

    After cleaning up, changing, and getting settled into a regular room, the urologist came in and started talking. The study showed that although my bladder can hold a large amount (thank you teaching), it cannot empty on its own. So in addition to being “a floppy bladder,” it also shows signs of detrusor under-activity (essentially the muscle used to empty the bladder is weak). He recommended trying an additional medication to help with all my symptoms as well as starting botox treatments for my bladder.

    Botox would be administered via the urethra and would involve many injections each treatment(30-50). None of this sounds like fun and would need to be repeated every six months or so in the urologist’s office. The upside would be that If/when it works, I should be completely dry! So that part is very exciting! I am signed up to start in 6-8 weeks.

    So there it is. There is nothing glamorous about any of this and yet the self-catheterization process is in a weird way, empowering. The learning curve was steep and medical professionals seem to always be impressed that I mastered it. I see it as one more thing to keep track of, that is needing to always be sure I have enough supplies on hand, do my part to prevent UTI’s, and keep smiling!

    I will be sure to keep you updated on my bladder, and I was about to apologize for the more “graphic/medical” approach to this post, but feel strongly that more information needs to be shared about this “private” matter. Like I said, my modesty is out the window, anyway! Please reach out to me if you have any questions, especially if you are going through bladder issues.

  • Facebook Memories: A Love/Hate Relationship

    Every morning when I awake, I do the same things. First I take off and clean my mask connected to my non-invasive ventilator, then I turn the light on, followed by checking in on my phone. The last piece always includes a look at my Facebook memories. Apparently, this day included many memories, some good, some more painful, and others are a smack in the face of my “previous life.”

    Today also marks a month that I have been home without a hospital admission since April. Almost a half of this year was spent being admitted, treated, and discharged from various local hospitals. I love being home and in my routine of things. This isn’t the life I dreamed of, but it’s important to make the most of it. I am sure I will look back at this date on Facebook and see the month milestone and laugh about it.

    According to Facebook a year ago today, I ended up admitted at MUSC. My brother drove me down to the ER and they, of course, treated me well. I so wish MUSC was closer and didn’t take an act of congress to get there.

    Facebook also reminded me that only four years ago I took on a challenge. I signed up for and completed a 15 mile swim for the American Cancer Society in honor of my Dad. I collected pledges in exchange for my hard work, swimming 15 miles in a month. It was the last time I attempted something physical from my body. Swimming has always been a part of me and I am so grateful for the times I swam in college on the swim team. Hopefully once this picc line is out, I will attempt swimming again. This memory reminds me of what I use to be. I am a finisher- 3 half-marathons, a few 10K’s and lots of 5K’s made me a runner, not a very fast one, but a finisher for sure. Now, I look forward to my latest challenge- cardio rehab and working my way towards better health.

    With the exception of self-cathing, the hardest medical learning curve was when I had a peg tube. This feeding tube was my only source of nutrition and for a while, hydration as well. I was not prepared for the emotional impact feeding tube would have on me. I was confused, lonely, and missed the socialization of eating with others. I took my formula every couple of hours, hoping and praying that I didn’t throw up. It was down right miserable. There was never a cause found for my inability to swallow or digest foods properly. Another medical mystery to be added to the list. Facebook reminded me that five years ago, I claimed my life back and the peg tube was removed.

    There were some non-medical Facebook memories as well. An awesome video of Sofi swimming in my parent’s pool for the first time when we escaped there from hurricane Florence. She was so agile then and loved getting in and out of the pool. As expected, there were memories that seem so distant to me as well. These are the memories of my professional life. The computer lab working again, meetings with parents, the stress of Sunday nights.

    I am not sure I would want to re-live any of these memories, but there are there, reminders of a life that was. I am not that person anymore. My hours spent are now my own, and the focus is on improving me, not a school or something similar. I often joke that my medical journey will “Make a nurse out of me, yet!” These memories that appear on Facebook, remind me of all the medical adventures that I have had.

    What about you? Do you check your Facebook memories? Are they good memories?