Fiercely Independent Pam

Tag: MUSC

  • One Cow Valve Coming Right Up!

    It has definitely been some time since I added a blog post. Creative juices are struggling and honestly I am not sure what to “report.” I know I have a lot to digest- there were many struggles to having this all take place. I have been telling everyone that open heart surgery wasn’t on the bingo card for the year. Honestly, I am not sure how all of this transpired to be here for the year. I am struggling with the idea that if something is going to go wrong, it will with me. The chances of having a central line infection are always going to be there. The actual event of having a central line infection hits differently. You feel like you have been chosen for something you must have done wrong. Missed wiping a cap or cleaning the line 6 seconds instead of a full 10. Maybe it was missing a dose of meds or…

    Several “strikes” came out against me as well.Once I got transfer orders, it still took several days to get to my destination and plan for surgery. then surgery got canceled due to situations beyond anyone’s control. The second surgery attempt was canceled due to a bad UTI bug, and then finally the third attempt was successful.

    The final surgery was so successful that I barely spent anytime in the ICU, which I guess ended up being a good thing, but it created a lot of unnecessary stress. Looking back, that was so far ago. It was scary and more than anything very stressful. I am happy to be part of the decision making again. It’s very hard for me to give up my independence as well as my ability to be an active member in my care.

    I have been saying there are two points that, when followed, will help everyone be on the same page and lessen stress and anxiety. The first is to simply tell me what someone is going to do, BEFORE it is done. small things like adjusting the bed or removing tape can seem to come out of left field, to take 3 seconds and explain what is going to happen goes a long way and reduces stress. The second is to be aware of other things going on, such as my leg wound or similar. There really should be no reason why the leg wound is touched or bumped into if the provider is aware that the problem is present.

    That’s the ugly part. It takes away from the pretty and special part. I am blessed to have nurses and techs that’s want to make my stay wonderful. These are the ones who go out of the way to give a real bath with soap and water and not just some cold wipes that itch. They are the individuals who sneak through the cafeteria to swipe some jelly because, honestly gluten free toast isn’t very good without some flavor. I respect these individuals so much, I am aware that I am less than a picnic in the park but I really value these folks that meet me half way and acknowledge how much I contend with.

    The bottom line is spending almost a month in a situation that no-one wants to be in is taxing. My bed is calling my name and it will appreciate my new found strength to move around it freely again. Processing the surgery itself is going to take some time. I honestly wasn’t ready for the depth and life- changing part. It wasn’t until I saw my incision that the impact hit me. I don’t want to play the game, about other people and similar surgeries, since all of us have had a unique path to get to where we are headed. I am happy with what needed to get done and how it got done. I’ve been routinely told to trust the team and trust the process. I found this harder to do than deal with the pain and annoyingness of the surgery itself.

    Today, this adventure continued. I moved to intense rehab, where I receive at least 3 hours of rehab each day. Evaluations in all areas were conducted today and I was challenged to stay awake through all of them! We started the morning cleaning up at the sink and tomorrow will be another SHOWER day, which means I will be exhausted afterwards. I demonstrated my strengths and weakness as they relate to getting dressed and setting myself up for success for the day. I would be a liar, if I didn’t say it felt pretty good to see myself in the mirror while brushing my teeth or fixing my hair. It also felt wonderful to wear real clothes and not a hospital gown.

    As I continue to progress in therapy, (my biggest hurdle at this point is endurance, I look forward to meeting goals of returning to pre-surgical status, but also reinventing my “normal’ to be a little harder and a little more protective of what I once was able to do! Please continue to pray for me and my success in this endeavor!

  • But How is it Really Going: A Real Look Inside my Thoughts Right Now About Upcoming Surgery!

    It is now a week that I have known that I was going to need open heart surgery. I was transferred on Monday and on this coming Monday, I will be the second surgical case. They will be doing a full traditional open heart surgery including breaking the sternum and opening everything up. The aorta valve will be replaced by either a pig or cow valve and the vegetation that is growing from the infection will be removed. Surgery time is estimated to be anywhere from three to six hours and I will be on a vent the entire time. I will most likely be intubated for the night of the surgery as well. This is a lot to take in.

    Today I woke up and realized that I didn’t know what I didn’t know. Meaning I knew I had a lot of questions on information that I wasn’t even given yet. Talking with members of my surgical team has helped to not only learn what I didn’t know, but ask questions and get answers about the process.

    On top of tracking down information, I feel pretty crummy. My blood pressure is low due to the valve failing, which leaves me in a constant state of exhaustion and general crumminess. I have lessened my need for pain medication because the lasix is doing a good job keeping fluid off my lungs, but that too comes with a host of annoying issues including having to get up to the bathroom very often. Getting up, dragging all this equipment and then still having to self-cath, is exhausting on its own. Then there is the issue of needing help to make this all happen, which of course cramps with my “Fiercely Independent Attitude.” Just having to ask for help drives me crazy.

    So, that’s how I am rolling- wake up, pain?, bathroom, exhaustion, sleep, wake up, pain? bathroom, exhaustion, … I look forward to the part where I can try some distractions like my crocheting or even watching the TV. I find comfort in phone calls and emails and appreciate people reaching out, but that to an honestly be frustrating because I never know who or when someone will show up at my door, interrupting a good talk with friend or family member.

    I guess that whining list is just that, proof that I am still getting frustrated and definitely not taking everything in perfect stride. That is an impossible task and recognize that is important to note that everything isn’t perfect or inspiring most of the time. I am fortunate for amazing nursing and people who genially care about me as a person and patient. I had to cut out a lot of my medications that help me be a happier person, but safety is the name of the game right now, so I am happy to do that.

    I put this post aside for a day and am coming back to it. I have sense spoken to the main surgeon who was wonderful and answered a lot of my questions and concerns. I also am super excited to know that my sister and nephew are coming down Sunday through Wednesday to help and be with me, which is beyond wonderful! I had some visitors today who brought some needed and comfort items and provided a good distraction for a while. Other than that, am taking advantage of having a lazy day today and just catching up on what I feel like doing.

    In the meantime, I ask you to warm your Rosaries, gather your prayer buddies, and anything else that will help the surgeons do their incredible job. I am confident in my team and my body to pull me through this major endeavor. I am around if you want to call or text!

  • 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.