Fiercely Independent Pam

Tag: surgery

  • Is It Really Already May?

    I have been trying to get to MUSC for my AV Fistula because it’s looking and feeling kinda funky. There is a bulge that has never been there before and its “thrill” has gotten much more powerful. It was scheduled 2 weeks ago and got bumped off the OR schedule. Then I was scheduled for this past Thursday, and the surgeon wasn’t available, now I am scheduled for Monday morning. The procedure has to be done in the OR, but no cutting is taking place(supposedly). I am not feeling the best about this and not confident in a good outcome. Just my gut feeling.

    Then, there is the issue of the giant cell arteritis diagnosis- I have had symptoms since December when I was evaluated in the hospital but they decided to not do a biopsy because I was younger than the average age. When I saw my rheumatologist, he had the biopsy scheduled for the next day. The biopsy was negative, but my rheumatologist doesn’t trust the findings because so much time passed before having it done and during that time, I was on high dose decadron. So, I started infusion treatments and continued to take steroids. I still have the odd headaches around that area, so I am now going for an angiogram CT this week.

    Also up this week, but I might reschedule, is an appointment with the vestibular ENT at MUSC. He, besides being the genius who found my canal dehiscence and performed my craniotomy, is treating me for some intense ear pain caused by nerve issues. He is a wonderful doctor and always tells me straight on what is going on and what I need to do!

    For the most part, I am feeling pretty good these days. I feel that my strength has returned to my “normal” but I am still struggling with my balance. When I am able to hold on to something while walking, I am fine, but unassisted, I walk like I am drunk. My Zeen has been amazing and today I managed to walk a mile with it. Now I would like to build to walking the mile without breaks. Yesterday, I rode the NuStep bike for 25 minutes and gradually adding more time.

    My blood pressure is running super low again these days. I have gone back on medication to bring my blood pressure up to just above normal so that when it drops as I stand, it is still high enough to support me. I am struggling to maintain this after a large meal, since the blood pools more in my stomach for digestion. I have for multiple reasons, try to avoid heavy or larger meals as much as I can.

    Despite gaining and losing the same 5 pounds for the last month, I am closing in on the 100 pound mark of weight loss. I am very proud of myself for accomplishing this and hope it truly benefits my health. My biggest frustration is realizing I don’t have a lot of clothing to wear and that I have to go through my drawers and closets to remove bigger sizes.

    In non-health news, I continue to keep myself busy here in the community. I create and distribute a monthly newsletter that includes previews of upcoming events, tips/tricks, pictures of previous events, and more! The residents seem to really enjoy receiving it each month. I am still offering technology help. I absolutely love doing this and have helped residents do everything from make their first phone call with a cell phone to learning how to play their favorite game on their tablet. I get paid in all sorts of ways including M&M’s!

    Things are progressing well on the service dog front as well. The biggest update to share is that the next 2 steps will take place on June 10th. Folks from the client applicant committee of PAALS will be visiting me to see my apartment and the facility as a whole. The other step is considered a community assessment and for that I get to interact with one of the wonderful dogs in training at the grocery store! Both parts of this visit will be exciting! Hopefully, all will go well and I can officially become a client. This would then start my fundraising process to cover the expenses of Team Training. The process is long and requires patience, but I am beyond happy giving the time knowing that something amazing will come from it.

    May is a great month- always busy, always wonderful! I get to celebrate my birthday again and the weather never disappoints. With a prayer, some hard work, and patience, I will see the fruits of my labor and trust.

  • The Case of the Missing Kidney Stone

    Yesterday I was scheduled for surgery to blast the offending kidney stone from January. I did all the pre-op, testing, and office visits. I was scheduled at the hospital and figured out transportation. My close friend even got up early to come with me.

    All was going smoothly minus having to be there hours earlier than necessary. I was brought back to the Operating room and the doctor started looking at real-time X-Rays and began calling different people over to him. I knew something was going on.

    I finally just yelled out, “Is there a problem?” The doctor then came over and told me that they couldn’t find the kidney stone and he doesn’t want to blast something that is not there. He continued to take x-rays to ensure that the stone is indeed gone. Then the OR team packed me up and sent me out. No medications were given, no procedure done.

    I went back to the pre-op area, got dressed, signed some forms, and was on my way home! Easiest surgery ever! Then it was time for lunch and a good nap!

  • One More Surgery Before The End of the Year!

    Nothing like finishing the year with an unplanned surgery. Yesterday, I ended up having a surgery biopsy of an artery near my left temple in an effort to learn more about a new possible diagnosis. All went well, I was thankful for my friend to take me and despite being a late add the day after Christmas, I made the most of it. Here is a link to the condition they are “treating for.” Basically, it’s yet another autoimmune issue.

    The hardest part continues to be taking such high dose steroids again. I needed a iv dose on top of everything else so sleep is hard to find. Luckily the pain is well managed with my usual and just a little extra Tylenol. The results will be pending until I follow up with the rheumatologist on Tuesday. still figuring out transportation for that trip too.

    In the meantime, I have a long awaited neurologist appointment on Monday to hopefully establish local neurology care and possibly go back to botox shots for my migraines. I made this appointment over the summer, so I hope it will be worth it. I’ve heard good things about the provider. Its hard to keep my expectations low at this point with a new provider, because even those that weren’t able to make much of an immediate difference, usually have something to give. For example, the neurologist I ended up working with in Florida was convinced I had MS, but his help really came in finding me a way to attain my amazing power wheelchair.

    And it goes like that. Some providers have the clinical experiences and are up to my challenge and others have a human side that rise to meet me as well. There are few in between that possess both features and for that I am most grateful. Either way, I have learned to not burn bridges for you never know when you may need them again. Chronic diseases cause extreme burnout for the patient and the providers, but with some patience, it can be managed.

    For this weekend, I will rest and recover, from Christmas, from surgery, and from chronic illness. I am working hard on a reflection of the past year, so that will be coming up. I think I am finally ready to embrace a New Year’s tradition that doesn’t work around a school calendar!