Fiercely Independent Pam

Tag: Don’t Let the Hard Days Win!

  • 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!

  • Navigating the World of Hospital Visits: My 5 Top Stressors!

    Being in the hospital is never fun or even tolerable at times. My complicated medical history means I have become a self-proclaimed expert at hospital stays. I have learned the good, bad, and downright ugly parts. Navigating hospital stays are stressful, especially when you are on your own.

    I thought I would provide my top 5 stressors when I am in the hospital in no particular order along with how I navigate them, somewhat successfully; I am a work in progress to say the least.

    1. Medical Gaslighting: defined as: Medical gaslighting happens when a healthcare professional dismisses, minimizes, or invalidates your symptoms and concerns. This can cause you to doubt your own health experiences. It often stems from unconscious bias, a lack of knowledge about certain conditions, or medical paternalism rather than intentional malice.
      • I try hard to ignore and stand my ground in a kind manner. This is the hardest thing for me as my anxiety is triggered easily by gaslighting due to previous experiences.
      • Being a woman comes with the “consequence” of a higher risk of medical gaslighting.
      • I try to remember that medical gaslighting is not intended to be taken personally, it is a problem with the provider, NOT me.
    2. Not accepting my experiences and knowledge.
      • Sometimes providers are amazing at asking for your input since you have lived with this condition sometimes longer than they have been treating it, other times, not as much.
      • I have found, again, keeping my composure and using kindness gets me much further and allows me to share more of my story.
      • Being prepared by having my medications, allergies, previous surgeries, and conditions listed clearly in a file or printed show organization and usually garners more respect from the provider.
    3. Being ignored or not answering call bells in a timely manner, especially for toileting requests.
      • I completely understand that at times, personnel aren’t able to come right away, it is acceptable up to twenty minutes or so, but after that, is just cruel.
      • Trying to prevent, as much as possible emergency situations by requesting help before you are going to have an accident.
      • Not being demanding with the call bell unless it is truly an emergent situation.
      • Explain your special needs ahead of time to as many people that need know. In my case I let my tech and nurses know that I self-cath and it needs to be over the toilet. I will keep to a schedule as much as possible but may need their help in between and that means it’s urgent.
    4. Questioning other doctor’s diagnosis’s or previous tests/procedures in an unprofessional manner.
      • I do a lot of research to find high quality providers from speciality places. I travel near and far as needed. It is very frustrating when a general hospitalist or similar tries to rework an entire treatment plan from a specialist.
      • If I do not believe that the hospital provider is going to honor a treatment plan I try to just let it go and plan to touch base with my provider when I leave the hospital to review what was changed and what I should do. Keeping calm and knowing I have a plan after discharge helps a LOT.
    5. Not being allowed to advocate for myself, especially when there is no one else around.
      • I am often in the hospital by myself without friends or family. This requires me to be a “well behaved” patient as well as my own advocate. Two roles that sometimes conflict with each other.
      • I try to remind providers that I am my own advocate and that I do not have family present. Sometimes that allows them to “hear” me in a different light.
      • I start off gently when advocating, I only stand my ground or get aggressive when my anxiety gets the best of me. I try to explain that I have a lot of medical anxiety and ask for forgiveness if I get aggressive, but stand my ground on the issue. I often ask them to come back after I can compose myself and apply coping strategies, which may include prn anxiety meds.

    This is just the surface of what I find frustrating in a hospital, but the most important to me. Dietary issues, attitudes, and facility issues are secondary. Naming my medical anxiety seems to be the best solution for me to feel comfortable and heard. Using a combination of coping skills I have learned and practiced as well as additional medications when appropriate goes a long way. I also, always try to remember that health care workers are overworked and stressed too. A smile and a warm greeting can sometimes keep any situation from becoming hateful or uncomfortable for anyone.

    What are your stressors in the hospital? How do you manage them?