Fiercely Independent Pam

Tag: Facebook

  • Six Years Ago: My Adventure with Blood Clots Begins.

    I’ve said it before- I have a love/hate relationship with Facebook Memories. Today, it reminded me that six years ago, I was fighting a giant uphill medical mountain. Besides doing a round a plasmapheresis(at the time they believed I had MG- Myasthenia Gravis). It turned out the multiple blood clots were found in my lungs (PE’s).

    The nurse and doctor worked quickly with a heparin drip. Then the reality of things came into focus. I would be at risk for additional clots for the rest of my life and would need to take a blood thinner forever too. I was placed on Eliquis, which requires less work than Warfarin.

    It was a scary diagnosis and I couldn’t do anything but follow the doctor’s orders. I knew having blood clots, especially in my lungs, was bad, but I just wanted to know what then soultion was going to be. Sometimes it amazes me to think about what I have gone through and that I am still hopeful and open to the next medical adventure.

    The good news is that despite going through three rounds of plasmapheresis, doctors were able to dismiss the MG diagnosis and needed to look for other answers. I had a muscle biopsy to confirm that it was not MG. This didn’t help the blood clots, but was still very good news.

    The bad news was a couple weeks later, I developed other clots, this time it was a DVT in my right arm. Since I developed a clot while taking Eliquis, the doctors considered that a failure and placed me on Warfarin and with all the monitoring it required.

    I was happy to find out at least that I could do my own monitoring of my INR for being on Warfarin. I was given a little machine similar to a blood sugar machine that uses a sample of blood. I do this once a week and then the clinic calls me back and gives me instructions for taking the Warfarin for the week. This is a big difference than when my father was on Warfarin and had to go to the clinic every week for a blood draw. So far, (knock on wood) the Warfarin has done its job to prevent future clots.

    Memories give us strength. They remind us what we have been through. For some people finding out they had multiple clots in their lungs might of put them over the edge, but not me- I challenge myself to keep going and not let anything stop me!

  • 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?