Fiercely Independent Pam

Tag: Grand Strand Medical Center

  • I’ve Arrived…For the First Time in A While, I am Able to Rest and Not be Constantly On Guard!

    Well after way too many days waiting, my transfer finally went through and I found my way home to MUSC in Charleston. The ride was less than comfortable, as storms broke out as we crossed most of the bridges and my bottom was absorbing most of the impact of being on a stretcher. Nonetheless, we found our way to the cardio-thorastic unit. I was quickly welcomed by a team of a resident, two nurses, and a tech. My room wasn’t flashy like the last one, but it made sense and allows for a job to be done. After a quick trip to the bathroom, we hit the ground running with questions, answers, med reconciliations, wires and more wires, and of course a quick time out to order dinner. I was super excited that they not only had a dedicated gluten free menu, but that it was 2 pages long and full of new food choices!

    By 7:30pm, which is the official shift change, I was exhausted and looking forward to a short break between nursing changes as well as some dinner. By the time dinner came, I had met with 3 different doctors on the unit, multiple nurses, a PA, and new x-rays were taken of my chest and head/shunt. Before any decisions would be made about possible shunt complications, a new ct of my head, neck, and abdomen were ordered. It was so nice to have my nurse and tech accompany me to the CT. By the time we were returning from CT, I had a horrible building chest pain, nausea, and overall feeling sucky. I gave it some time and then finally called “uncle.” within a few minutes a couple of providers came in and ordered some more x-rays, lab work, and an EKG. They were most concerned with the building fluid in my lungs. Apparently the fluid continued buildup so the decision was made to start me on IV lasix, which of course means more trips to the bathroom than anything else.

    The shunt series came out ok, and neurosurgery already signed off that no interactions are necessary at this time, which is a mega- bonus. My heart enzymes continue to climb and are being monitored, the lasix is doing its job and I am beginning to not rattle as much in my lungs. I figured I would take this early, but quiet moment to type up an update as I have a sneaky suspicion that today is going to get a little crazy with more tests, procedures, and questions/answers. I know they want to repeat the TEE and see if the vegetation has continued to grow or if the antibiotics are starting to help knock it down some. Other than that, I still need to meet the attending and the rest of his team, touch base with my immunology team, as well as endocrinology and everyone else who wants “in” on my complicated case. I am hoping to have a plan with some tentative dates by the end of today, but that might be a little too hopeful.

    For now, I wait to see what comes next. I am confident that it’s going to be a whirlwind of a day, as will the next couple. I am enjoying the high level of knowledge, care, and concern. Hopefully my meals will continue to be yummy, pain meds come when I need them, and I am able to work with my team to come up with a successful treatment plan.

  • More Hurry Up and Wait… The Joys of Hospital Stays!

    I’ve written before about one of my Dad’s sayings- “Hurry Up and Wait!” Meaning often times, especially in the medical world we are told to be patient and sit around for your turn, but when it is your turn you better be ready to jump to attention!

    Previous events have taught me this is wisdom for a lot of things, but especially waiting for a transfer to another facility! You need two things to happen and align. The first is that you are accepted by the receiving facility, and the second is that they have a bed available for you. The second is where the waiting comes in- you never know and can’t predict when a bed will become available. There are so many factors about bed availability: is someone actually going to be discharged and do they have a ride home or are they waiting for a bed in a facility that is also on a backlog? Timing is everything because you also have to coordinate transportation and the distance facilities are from each other comes into play too.

    Right now, I am trying to move from the “Big” hospital in Myrtle Beach to MUSC in Charleston. The two facilities are about 2 1/2 hours away from each other and transportation needs to be an ambulance. I have been granted acceptance, but no beds are available in cardio-thoracic surgery, where I need go.

    I can totally see how this is going to go down. I am finally going to chill out and relax some from a crazy day today and enjoy breakfast in the morning and someone, well intentioned, will burst into my room to let me know transport is on their way and everything needs to be ready. So, I will frantically try to pack up my stuff with some help, and the WAIT because transport is NEVER on time, unless you are not prepared, then they are early!

    Usually by the one week mark in the hospital, my nerves are frayed at best. I am tired of being woken up, poked, prodded, and have a revolving door of doctors who don’t have the time to get to know you as a case, never mind a person. The last thing I want to do is be rushed or having to sit around and wait!I am not entirely sure which is worse!

    I took a meal/infusion break writing this and right on cue, my nerves have had it- total meltdown. I can’t stand when a nurse or medical assistant puts a blood pressure cuff on you, or worse, a thermometer in your mouth and then starts asking you important questions. I might have lost my stuff a little bit by saying, WAIT! I can only handle one thing at a time! It seemed to have the nurse take a step back and say, I see you are a little agitated. I said a little and most of it is not your fault, but give me a little grace, and a little room. We seem to be successfully moving on from that point.

    I am also receiving my IVIG infusion this evening. A new record for me to have two treatments in a row in the hospital (I receive it every two weeks). One treatment in the hospital makes me appreciate that I usually receive it at home, a second treatment in the hospital in a row, makes me miss my infusion nurse, Gail, something fierce. We have a routine down, where our needs are both met. The questions are limited to the newest adventures and not my lifelong medial history. Food is shared and family stories are told. We catch up like the friends we are.

    So, here is to the next phase of Hurry Up and Wait! My sincere hope is that tomorrow is the day I move down to Charleston and MUSC. Home of the Wizard and other great doctors who simply get me and my complicated medical needs. I don’t feel like Boo in Monster’s Inc when she touched Mike and Sully; there I am not the weird one. I like being treated as the “normal one.”

    I’ll be in close contact with you all, especially when a surgery date is set. In the meantime send my story far and wide, especially to prayer warriors- I need an army of prayers to get through this next phase!

  • Paying the Price of a Fun Time: How Chronic Illness Always Wins!

    Chronic illness’ worst feature is that it ALWAYS shows up! Somedays you think you have outsmarted it and you got away with something, but payback stinks! I had a super busy and rewarding week. Besides my awesome PAALS visit, I had doctor’s appointments, tech classes, and some family/friends time. Now I am “paying” for it! I hate this.

    For the last 2 1/2-3 weeks I’ve been dealing with some nasty GI issues. I am not quite sure what is going on, but having trouble keeping food down after I eat, regardless of what I eat and dealing with some major abdominal pain. So far we know my platelets are low and my liver enzymes are super high and increasing. Additionally, my spleen is also enlarged. CT hasn’t shown any blockages or anything surgical, which is good since all my major disposable organs are gone!

    I have been working with an awesome, old school type GI doctor who has ordered a huge outpatient workup, but scheduling these tests in a timely manner has been difficult. Yesterday, I drew a line in the sand and decided something had to give. The pain was making me miserable.

    So, I am back at the hospital, trying to find some answers while they help manage the pain and nausea. I would be lying if if didn’t admit that I am nervous that this might go the direction I was going in several years ago, when I ended up with a PEG tube for feeding. That continues to be one of the hardest medical journeys I have taken. I just keep reminding myself that this is most likely something different and that is not the path we are on.

    I am thankful they admitted me this time. I need some answers and some relief. For now, I am resting and trying to get a hold of this stupid pain.

    I’ll be in touch with updates!