Fiercely Independent Pam

Blog

  • 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!

  • Just a Silly Goose Who Has the Medical Stability of a Wet Paper Straw!

    I saw this image the other day online and decided it described me to a “T”! I am beyond 100% behind the silly goose trend having bought more goose outfits for my mom’s porch (lanai) goose than I care to share. Similarly, the image of a wet paper straw is vivid to almost anyone that has had to manage one of these stupid inventions. Some friends and family call me flakey or unreliable these days because I cancel more events/outings than I actually go on. Others are just relieved that I canceled, so they don’t have to worry about me getting “sick” or passing out when I am with them. All of this can be lumped under medical stability.

    Each day, outing or event is up for the stability monster to steal. I can wake up being beyond excited for something upcoming and feel great, only to have the medical stability monster to wrestle me into my bed with a migraine, pain, low blood pressure, low blood sugar, etc. My monster is very lucky because there are so many medical conditions to choose from. If he ever gets bored of that, he decided my portable oxygen concentrator doesn’t want to work, or my wheelchair didn’t charge correctly. In my world of stability, nothing is off the table.

    I used to be reliable. I used to be the one that made things happen despite what else might be going on. The only thing that used to slow me down was my crazy job responsibilities. Now, I’ve learned to not to commit to anyone or anything because I just end up disappointing myself when I can’t make it happen. Stability is a funny thing, you never think about it until you become a giant flake!

    I’ve learned to stop mourning my prior life and see the possibilities of my new life. Without my job, which is loved, dragging me down and sucking up so much energy, I am free to see other things. I have resumed regular reading and increased my prayer time. I have had time to write this blog, and start something from scratch. I am preparing myself to welcome a partner-in-crime with a wet-nose! Most important, I have learned not to measure myself by what others think about me.

    This step took a lot of work. I had to hit rock bottom several times to find the strength to change my mourning into dancing. I fully surrendered myself to my creator and asked Mother Mary for Her help to undo the knots of my life. I was honest with myself, friends, family, and even strangers. I worked hard in therapy and continue to do so. I know its not going to be lollipops and gumdrops here on out, but being honest with myself and others means that the rollercoaster of my stability should be a little less like Rockin’ Rollercoaster (now Muppets) and a little more like Dumbo!

    I will continue to battle the stability monster. With practice, a fluffy best friend, and maybe a little found luck, I will start winning more than losing the battles. After all the view from Dumbo is SO much better! I might never reach the status of my favorite stainless steel straw, but anything is better than trying to use a paper straw!

    How to you maintain your own stability? What are your go-to strategies?